Autistic Community

and the Neurodiversity

Movement
Stories from the Frontline
Edited by Steven K. Kapp
Autistic Community and the Neurodiversity
Movement
 Steven K. Kapp
Editor

Autistic Community
and the
Neurodiversity
Movement
Stories from the Frontline
Editor
Steven K. Kapp
College of Social Sciences
and International Studies
University of Exeter
Exeter, UK
Department of Psychology
University of Portsmouth
Portsmouth, UK

ISBN 978-981-13-8436-3 ISBN 978-981-13-8437-0 (eBook)

https://doi.org/10.1007/978-981-13-8437-0

© The Editor(s) (if applicable) and The Author(s) 2020. This book is an open access publication.
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 Foreword

This book describes some of the key actions that have defined the autism
rights branch of the neurodiversity movement since it organized into a
unique community over 20 years ago. The actions covered are legend-
ary in the autism community and range from “The Autistic Genocide
Clock” through to the “Institute for the Study of the Neurologically
Typical”, and famous pieces of work like “Don’t Mourn for Us”.
These acts have forged new thinking on autism and established the neu-
rodiversity movement as a key force in promoting social change for autistic
people. It is primarily autistic activists who have been at the vanguard of
the neurodiversity movement. All but two of the 21 contributors to this
volume identify as autistic. The collection describes the biographies and
rationale of key activists in their own words, thus the motto of disability
rights activism “nothing about us without us” is a guiding tenet for the
book. The phrase (and this volume) are rooted in the concept of standpoint
epistemology. A standpoint position claims that authority over knowledge is
created through direct experience of a condition or situation. Standpoint
epistemology is related to the idea of lay expertise, which is discussed
extensively in the sociological literature. So, the book values the experi-
ence of autistic people as a source of knowledge about their own plight.

v
vi Foreword

The volume acknowledges that individual contributions are shaped by

contributors’ political and social experience as well as their lived under-
standing of autism. Standpoint theory suggests inequalities foster particu-
lar standpoints, and that the perspectives of marginalized and oppressed
groups can generate a fairer account of the world. Individuals from such
groups are in a distinctive position to call out forms of behavior and prac-
tices of the dominant group, hopefully leading to social change. This col-
lection illustrates the perspective of each contributor’s unique voice. But
together, the chapters powerfully illustrate the sense of a group with a
shared point of view, united in a common movement.
Enormous credit goes to the Editor, Steven K. Kapp, who bought
this volume together and was able to simultaneously command the
trust of the autism activist community and the respect of the academic
community—not an easy balance to get right!
The hope is this book will provide a reference text for readers inter-
ested in the history and ideas of the neurodiversity movement and how
these ideas have shaped production of expert and especially lay knowl-
edge about autism. However, the neurodiversity movement has been
problematized by both parents and academics for being unrepresenta-
tive and divisive, and the book also addresses some of these critiques.
The target academic audience is primarily undergraduates and schol-
ars in sociology, history of medicine, and psychiatry. This collection
of activists’ stories should act as a reference text useful as a source for
further academic debate and analysis. Another important set of readers
are parents wishing to learn more, and of course autistic persons them-
selves. Our generous funder, the UK’s Wellcome Trust, has supported
the publication of this volume on an open access platform to make it
available for free online.
The book is not a complex analysis or a “celebratory” piece; instead
it offers raw first-person accounts, relating how and why activists have
contributed. It aims to preserve and document the stories of some of
the original activists whose voices helped shape and inspire the fledgling
neurodiversity movement.
Enjoy!

Exeter, UK Ginny Russell

 Preface

This book has emerged from a postdoctoral research fellowship within

sociology in the U.K. as part of the Wellcome Trust-funded project
Exploring Diagnosis: Autism and the Neurodiversity Movement, which
includes academic engagement with the movement as well as criti-
cal analysis of its position. The following chapters provide an overview
of the neurodiversity movement, describing the key actions of autistic
activists in the movement between 1992 and the present day, in their
own words. Although previous books have provided coverage of the his-
tory of autism inclusive of the neurodiversity movement as narrated by
a journalist or researcher [10, 12] or featured anthologies of contribu-
tors from autistic people published within the movement [1, 3, 9], this
edited collection provides the first history of the movement from first-
hand accounts of members of the autistic community and both autistic
and non-autistic parent movement activists. Following my introduction
to the movement and contributions, the book contains 19 chapters by
21 authors organized into parts about the forming of the autistic com-
munity and neurodiversity movement, progress in their influence on the
broader autism community and field, and their possible threshold of the

vii
viii Preface

advocacy establishment. This is followed by a description of some cri-

tiques of the movement, and I follow with the conclusion.
The Exploring Diagnosis project research inquires into how diagnosis
catalyzes mobilization, focusing on autistic adults and the neurodiver-
sity movement (NDM). The project aimed to assess what the under-
standings of neurodiversity are among autistic adults. Ginny Russell, the
project lead, and I conducted a thematic analysis [2] of autistic adults’
responses to the question “What is neurodiversity in your own words”
from a study I co-led with Kristen Gillespie Lynch et al. [4]. Russell and
I found that the data largely mapped onto definitions autistic adults in
the movement have given [5, 11] defining the NDM as encompassing
both human biological differences in cognition, brains, and genes while
also serving as an activist tool for change toward acceptance and inclu-
sion of autistic and other neurodivergent people. Responses described
neurodivergent people as socially oppressed and stigmatized, yet pos-
sessing valuable differences that should not be cured but instead sup-
ported with rights and accommodations. Considering that research
participants knew of but did not necessarily subscribe to the movement,
the consensus that emerged suggested clarity about the meaning of
(the) neurodiversity (movement) as understood by aware autistic adults.
Indeed, the descriptions of these terms from contributors to this book
who chose to put them forward, aligned well with those in both the
popular literature and aforementioned analysis.
As contributors (including myself ) make clear, we think autism
involves strengths and weaknesses that amount to both a difference and
a disability, and do not consider autism an advantage overall but see
autistic people as socially disadvantaged. No one emphasized strengths
overall or highlighted particular strengths, but we take a “big-tent”
approach to autism that recognizes no one’s worth depends on having
particular talents or abilities. The Exploring Diagnosis project corrobo-
rated this further by interviewing autistic adults in the UK about the
strengths participants think autism confers, which almost everyone
identified, and yet they mentioned moderating influences that could
make these traits function as challenges [8].
Conversely, the book most addresses the question of what political
activities the NDM has taken part in, and how these have challenged
 Preface ix

the notions of diagnosis and intervention for autism. The contributors

illustrate notable examples of the manifestos (both ideological and as
applied to policy), mailing lists, websites, conferences, issue campaigns,
academic projects and journals, books, organizations, and advisory roles
to parent- and professional-led bodies that constitute some of the range
of the neurodiversity movement’s political activities. These actions have
had widespread impacts toward an emerging view among families, prac-
titioners, researchers, and the public on autism as both a difference and
disability.

Positionality Brought to the Book

I am both an autism scholar and an autistic neurodiversity activist, so
while I seek to maintain high standards of rigor and fairness in edit-
ing this collection, it may reflect this positionality. In 2007 Scott
Robertson, the co-founder and then Vice President of the Autistic
Self Advocacy Network, reached out to me privately on Facebook and
undertook a mentorship role in which he introduced me to the neu-
rodiversity and disability rights movements. At that time, as an under-
graduate, I lived in my hometown of Los Angeles in the world’s region
(Southern California) most dominated by the mainstream medical
and alternative medical autism establishment. Groups like the Center
for Autism and Related Disorders (CARD) and the Lovaas Institute
anchored the provision of therapy based in applied behavioral analy-
sis designed to “recover” autistic children, alongside the parent-based
advocacy organization Cure Autism Now (which the similar organi-
zation Autism Speaks absorbed that year). Meanwhile, groups such as
Talking About Curing Autism (TACA) and Generation Rescue (both
represented around this time by Jenny McCarthy, “Ph.D. in Google
Research” [6]) spread potentially deadly disinformation including vac-
cine skepticism and chelation therapy. Amid this hostile climate, I
decided to earn an actual Ph.D. (in educational psychology) at the heart
of the medical model of autism research, the University of California
Los Angeles, to learn the thinking and language of mainstream sci-
ence to better critique them. Over this time I observed early autistic
x Preface

leaders (most prominently Jim Sinclair) become much less active, and
their products become increasingly difficult to access, such as websites
no longer hosted or archived. Leaders of autism’s cure movement took
down materials as well, but this more often happened to obscure their
more outrageous products in response to autistic-led resistance, as they
usually have the resources to continue displaying them (see Rosenblatt
[7] for examples). The need to preserve and document the history of the
autistic community and neurodiversity movement had become appar-
ent. Like my career, the book merges science and advocacy, intended for
both academia and the autism community.

Exeter, UK Steven K. Kapp

References
1. Bascom, J. (2012). Loud hands: Autistic people, speaking. Washington,
DC: Autistic Self Advocacy Network.
2. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology.
Qualitative Research in Psychology, 3(2), 77–101.
3. Brown, L. X., Ashkenazy, E., & Onaiwu, M. G. (2017). All the weight of
our dreams: On living racialized autism. Lincoln, NE: DragonBee Press.
4. Gillespie-Lynch, K., Kapp, S. K., Pickens, J., Brooks, P., &
Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic
adults as critical autism experts. Frontiers in Psychology, 8, 438.
5. Hughes, J. M. (2016). Increasing neurodiversity in disability and social jus-
tice advocacy groups. Washington, DC: Autistic Self Advocacy Network.
6. McCarthy, J. (2007). Louder than words: A mother’s journey into healing
autism. New York: Dutton.
7. Rosenblatt, A. (2018). Autism, advocacy organizations, and past injus-
tice. Disability Studies Quarterly, 38(4). Retrieved from http://dsq-sds.
org/article/view/6222.
8. Russell, G., Kapp, S. K., Elliott, D., Elphick, C., Gwernan-Jones, R.,
& Owens, C. (2019). Mapping the autistic advantage from the expe-
rience of adults diagnosed with autism: A qualitative study. Autism in
Adulthood (Advance online publication).
9. Sequenzia, A., & Grace, E. J. (2015). Typed words, loud voices. Fort
Worth, TX: Autonomous Press.
 Preface xi

10. Silberman, S. (2015). NeuroTribes: The legacy of autism and the future of
neurodiversity. New York: Avery.
11. Walker, N. (2014, September 27). Neurodiversity: Some basic terms and
definitions. Neurocosmopolitanism.
12. Waltz, M. (2013). Autism: A social and medical history. Basingstoke, UK:
Palgrave Macmillan.
 Acknowledgements

I wish to acknowledge the generous support of the Wellcome Trust, the

grant of which (108676/Z/15/Z) funded my time producing the book
as part of the project Exploring Diagnosis: Autism and Neurodiversity
at the University of Exeter. Thank you also to Dr. Ginny Russell, Daisy
Elliott, and Rhianna White of the Exploring Diagnosis project. Ginny’s
inclusion of me and a book as part of the project made this specific
edited collection possible, and her vision, work with me on the applica-
tion, supervision of the process, and contributions critically supported
the product’s scholarship. Daisy’s administrative support helped to keep
me organized and allowed me to focus on the content. Rhianna’s assis-
tance with formatting and proofreading came in timely fashion, help-
ing me to deliver the main manuscript. Also at the University, Professor
Brahm Norwich provided invaluable, steady mentorship on editing
the book. Too many people have shaped my development and career
to acknowledge when thinking beyond the production of the book,
but within that domain I would like to thank Josh Pitt of Palgrave
Macmillan for commissioning the book and Sophie Li of Springer
Nature for assisting the publication process with a positive approach,
patience, and flexibility.

xiii
xiv Acknowledgements

The autistic community members and activists deserve recognition

not only for their contributions to the neurodiversity movement, but
also thanks for the time and effort in producing heartfelt, well-written
chapters. Ari Ne’eman provided input that shaped the direction of
the book, most directly through helping with selecting and recruiting
authors. Ari and Dr. Scott Michael Robertson created a vehicle for my
activism through co-founding the Autistic Self Advocacy Network,
and I am indebted to Scott for introducing me to the disability rights
and neurodiversity movements and providing patient, knowledgea-
ble mentorship. Nick Chown produced a professional index that ben-
efitted from his insider status as an autistic neurodiversity scholar.
Ryan Smoluk created the cover art, “The Path (Planning Alternative
Tomorrows with Hope)”, which offers a brilliant image from a member
of the autistic community that resonates with work of the neurodiver-
sity movement and spirit of the book.
 Contents

1 Introduction 1
Steven K. Kapp

Part I Gaining Community

2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”:

A Cultural and Intellectual History of Neurodiversity’s
First Manifesto 23
Sarah Pripas-Kapit

3 From Exclusion to Acceptance: Independent Living

on the Autistic Spectrum 41
Martijn Dekker

4 Autistic People Against Neuroleptic Abuse 51

Dinah Murray

xv
xvi Contents

5 Autistics.Org and Finding Our Voices as an Activist

Movement 65
Laura A. Tisoncik

6 Losing 77
Mel Baggs

Part II Getting Heard

7 Neurodiversity.Com: A Decade of Advocacy 89

Kathleen Seidel

8 Autscape 109
Karen Leneh Buckle

9 The Autistic Genocide Clock 123

Meg Evans

10 Shifting the System: AASPIRE and the Loom

of Science and Activism 133
Dora M. Raymaker

11 Out of Searching Comes New Vibrance 147

Sharon daVanport

12 Two Winding Parent Paths to Neurodiversity Advocacy 155

Carol Greenburg and Shannon Des Roches Rosa

13 Lobbying Autism’s Diagnostic Revision in the DSM-5 167

Steven K. Kapp and Ari Ne’eman

14 Torture in the Name of Treatment: The Mission to Stop

the Shocks in the Age of Deinstitutionalization 195
Shain M. Neumeier and Lydia X. Z. Brown
 Contents xvii

15 Autonomy, the Critical Journal of Interdisciplinary

Autism Studies 211
Larry Arnold

16 My Time with Autism Speaks 221

John Elder Robison

17 Covering the Politics of Neurodiversity: And Myself 233

Eric M. Garcia

18 “A Dream Deferred” No Longer: Backstory

of the First Autism and Race Anthology 243
Morénike Giwa Onaiwu

Part III Entering the Establishment?

19 Changing Paradigms: The Emergence of the Autism/

Neurodiversity Manifesto 255
Monique Craine

20 From Protest to Taskforce 277

Dinah Murray

21 Critiques of the Neurodiversity Movement 287

Ginny Russell

22 Conclusion 305
Steven K. Kapp

Index 319
 List of Figures

Fig. 4.1 The chart clearly showed that the vast majority of claimed
“benefits” of medication in this sphere are about reducing
behavior rather than enhancing personal well-being
or capacity 53
Fig. 4.2 Summarized comparisons of restrictive or potentially fatal
effects of psychotropic drugs prescribed for autistic adults
with learning disabilities and challenging behavior (ca
2001). From left to right, starting with the antipsychotics:
phenothiazines (e.g. Chlorpromazine), thioxanthines
(e.g. Fluenthixol), Haloperidol, pimozide, risperidone,
olanzapine; and then various non-neuroleptic experimental
drugs for autism-related perceived problems, viz paroxetine,
lithium, carbamazepine, buspirone, naltrexone, and the
beta-blocker propranolol 56
Fig. 4.3 The APANA logo, designed by Ralph Smith 58
Fig. 9.1 The Autistic Genocide Clock by Meg Evans 124
Fig. 11.1 Autistic Women and Non-Binary Network tagline 153
Fig. 20.1 Anti-Autism Speaks Logo designed by Dinah Murray 279
Fig. 20.2 Another Anti-Autism Speaks Logo circulating in 2008,
anonymous 279

xix
 1
Introduction
Steven K. Kapp

This book marks the first historical overview of the autistic community
and the neurodiversity movement that describes the activities and rationale
of key leaders in their own words. All authors of the core chapters consider
themselves part of the autistic community or the neurodiversity movement
(including a couple among the growing legion of non-autistic parents),
or both in most cases. Their first-hand accounts provide coverage from
the radical beginnings of autistic culture to the present cross-disability
socio-political impacts. These have shifted the landscape toward viewing
autism in social terms of human rights and identity to accept, rather than
as a medical collection of deficits and symptoms to cure. The exception to
personal accounts and part of the impetus for the book, Jim Sinclair, has
become inactive since leading the autism rights movement’s development

S. K. Kapp (B)
College of Social Sciences and International Studies, University of Exeter,
Exeter, UK
e-mail: steven.kapp@port.ac.uk
Department of Psychology, University of Portsmouth, Portsmouth, UK

© The Author(s) 2020 1

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_1
2 S. K. Kapp

of culture and identity after co-founding its first organization Autism

Network International (ANI) in 1992. Yet this book respects the disability
rights motto of “Nothing About Us Without Us” by commissioning an
autistic historian and chairperson of an organization inspired by ANI’s
historic autistic community retreat to analyze the context and impact of
Sinclair’s legendary work. Similarly, I am an autistic neurodiversity activist
(a role that precedes my career as an autism researcher), but I endeavor to
apply robust scholarly standards to editing this collection (see the Preface).

Introduction to the Neurodiversity

Movement
Many descriptions arguably misunderstand the concept of neurodiversity
and the framework and actions of the neurodiversity movement, so this
chapter seeks to explain them before introducing the core chapters.
The term neurodiversity originates from the autism rights movement in
1998 from Judy Singer on Martijn Dekker’s mailing list InLv, but as the
movement has matured into a more active part of a cross-disability rights
coalition, the term has evolved to become more politicized and radical
(a change noted by a few contributors, especially Dekker in Chapter 3).
Neurodiversity has come to mean “variation in neurocognitive function-
ing” (p. 3) [1], a broad concept that includes everyone: both neurodivergent
people (those with a condition that renders their neurocognitive function-
ing significantly different from a “normal” range) and neurotypical people
(those within that socially acceptable range). The neurodiversity movement
advocates for the rights of neurodivergent people, applying a framework
or approach that values the full spectra of differences and rights such
as inclusion and autonomy. The movement arguably adopts a spectrum
or dimensional concept to neurodiversity, in which people’s neurocogni-
tive differences largely have no natural boundaries. While the extension
from this concept to group-based identity politics that distinguish between
the neurodivergent and neurotypical may at first seem contradictory, the
neurodiversity framework draws from reactions to existing stigma- and
mistreatment-inducing medical categories imposed on people that they
 1 Introduction 3

reclaim by negotiating their meaning into an affirmative construct. Peo-

ple who are not discriminated against on the basis of their perceived or
actual neurodivergences arguably benefit from neurotypical privilege [2],
so they do not need corresponding legal protections and access to services.
I have observed little serious aggrandizement of neurodivergent people
or denigration of neurotypical people, but satire has been misinterpreted
(Tisoncik, Chapter 5) or rhetoric misunderstood due to disability-related
communication or class differences.

The Diversity in Neurodiversity

Although the people for whom the neurodiversity movement advocates

far exceed autistic people, they also fall outside the main scope of the book.
Some contributors’ topics do include campaigns directly affecting people
with other disabilities, such as that to close the tortuous Judge Rotenberg
Center in the U.S. (Neumeier and Brown, Chapter 14) and to pass the
Autism/Neurodiversity Manifesto in the U.K. (Craine, Chapter 19), yet
the movement remains led by autistic people. Mainly though, the scope of
the movement remains unclear; at a disability studies conference I asked
participants how they felt about minimum criteria for eligibility within
it, but they felt uncomfortable posing limits [3]. A woman suggested her
multiple sclerosis should qualify; indeed, coverage of people with not only
chronic illnesses but also primary sensory disabilities like blindness and
psychiatric conditions like schizophrenia remain unclear [4]. One issue
may be the importance of the cure issue to the movement; for example,
an autistic neurodiversity activist advocates for acceptance for autism but
a cure for epilepsy (which she sees as separate from her sense of self and
understands as potentially fatal). Such neurological conditions fall within
the broader disability rights movement and deserve basic rights accommo-
dated, such as, arguably, policy to ban flash photography in public places
that could trigger seizures in people with photosensitive epilepsy [5]. The
primacy of biology to the movement seems clear due to the neuro- in neu-
rodiversity, and debates as to whether relevant neurodivergences must be
neurodevelopmental or can be acquired environmentally or in adulthood
have taken place in the U.K. [6]. Conditions such as schizophrenia fall
4 S. K. Kapp

within another identity-based socio-political movement (the mad pride

movement, and while the neurodiversity movement may help provide a
bridge to the disability rights movement, many adherents do not view
themselves as disabled [7]. More importantly and practically, campaigns
to attribute these conditions to the brain have backfired, likely because the
public often associates them with violence and thinks brain-based condi-
tions are more difficult to treat [8, 9]. Ultimately, book contributors did
not exclude any particular conditions from the domain of the movement,
and the right to self-determination offers the opportunity for other people
to identify and organize within the movement.
While some activists say neurodiversity refers simply to a biological fact
of this variance as opposed to the movement [10, 11], contributors to this
volume—as aware autistics do generally: see Preface—suggest the term
implicitly refers to a tenet of inclusion based on universal rights principles,
with an emphasis on those with neurological disabilities. This includes
aspirations of full inclusion in education, employment, and housing; free-
dom from abuse (e.g. abolition of seclusion and both chemical—that is,
overmedication to control behavior—and physical restraint); and the right
to make one’s own decisions with support as needed. Contributors evoke
“the compassionate, inclusive flavor of the word” (Seidel, Chapter 7) and
“human rights concept” (Greenberg, Chapter 12): “the specific premise of
neurodiversity is full and equal inclusion…Neurodiversity is for everyone”
(daVanport, Chapter 11). Buckle (Chapter 8) clarifies that this inclusion
involves interaction between diverse groups even in settings prioritized
around the needs of a particular group: neurodiversity “means having
NTs [neurotypicals] in autistic space as much as it does autistics in NT
space”. Raymaker (Chapter 10) explains both parts of the compound word:
“Neurodiversity, to me, means both a fabulous celebration of all kinds of
individual minds, and a serious, holistic acknowledgement of the necessity
of diversity in order for society to survive, thrive, and innovate”, which as
Garcia (Chapter 17) states requires that society “welcome neurodivergent
people and give them the tools necessary to live a life of dignity”. Inspired
by the principles of other social justice movements, the neurodiversity
movement recognizes intersectionality (how neurodivergent people’s dis-
advantages are compounded by other types of social oppression) beyond
cross-disability solidarity, such as race (see Giwa Onaiwu, Chapter 18),
 1 Introduction 5

gender including gender identity (see daVanport, Chapter 11), and class
(such as the call by Woods [2017] for universal basic income).
Like the far-reaching concept of diversity, the neurodiversity movement
as applied to autism functions inclusively, in that activists include non-
autistic people as allies, and it accepts and fights for the full developmental
spectrum of autistic people (including those with intellectual disability and
no or minimal language). Marginalization of non-autistic people by non-
autistic relative-led autism organizations catalyzed the movement (Pripas-
Kapit, Chapter 2; [12]). Thus it seeks to help families with advocacy for
acceptance, understanding, and support that can positively impact peo-
ple across the autism spectrum and their parents [13]. Celebratory acts
for parents toward autistic children such as learning to speak their child’s
language and even accepting autism as part of their child’s identity, and
ameliorative acts like parents teaching their child adaptive skills to cope
in wider society, both show nearly universal support among the autism
community—including “pro-cure” parents and “pro-acceptance” autistic
people [14], yet many of the more powerful parental organizations have
behaved in dehumanizing and polarizing ways toward autistic people, such
as using fear and pity as fundraising strategies and seeking an end to all
autistic people regardless of their preferences (daVanport, Chapter 11).
They have appropriated self-advocacy by using language such as “fam-
ilies with autism” (whereas if anyone “has” autism, autistic people do).
They have also claimed autistic people cannot advocate for public policy
affecting their children (even though some autistic activists themselves
have intellectual disability, language impairment or no speech, epilepsy,
gastrointestinal disorders, self-care needs such as toileting or daily living,
meltdowns, etc., or their children do: [15, 16].

The Neuro- in Neurodiversity

While the neurodiversity movement generally views autism as natural and

essentially innate, despite the inability of clinicians to identify it from birth,
this viewpoint transcends politics despite its utility in activism. Autis-
tic people tend to view autism as arising entirely from biological causes,
with no evident influence from the movement [14]. This may occur both
6 S. K. Kapp

because autistic people likely cannot remember their life before autism
becomes diagnosable, and because autistic people more often conceive
of and describe autism from the inside, referring to internal processes
such as thoughts, emotions, and sensations rather than behavior [17].
This conception of autism privileges lived experience, and complements
autistic activists’ arguments that underlying differences and difficulties
persist despite coping mechanisms that may behaviorally “mask” autism,
which have support from neuroscientific and other research [18]. Such
a phenomenon helps autistic people counter the attack “You’re not like
my child” from parents; see the group blog We Are Like Your Child
(http://wearelikeyourchild.blogspot.com/). It also facilitates a neurologi-
cal kinship of sorts with fellow autistic people, helping us to emphasize
within-group commonalities to develop a sense of community despite
variability in how our behaviors present, and to argue for our rights based
on what Silverman [19] calls “biological citizenship”. An inside-out view-
point of autism also helps advocates of neurodiversity explain adaptive
reasons why autistic people engage in atypical behaviors, such as “stim-
ming” (e.g. body rocking and hand flapping: Kapp et al. [20]; Schaber
[21].
Importantly, brain-based explanations facilitate the movement’s com-
patibility with alliances with non-autistic parents. They reject a role in
caregiving for causing autism, absolving parents of the responsibility sci-
entists and clinicians assign(ed) to them when Freudian psychogenic the-
ories have dominated (as they still do in France and to a lesser extent in
countries such as Brazil). This may reduce parents’ aversion toward listen-
ing to neurodiversity advocates describe helpful parenting practices. Many
of the more successful “therapeutic” approaches involve educating others
to respectfully understand autistic people’s differences, such as teaching
responsive caregiving tactics to parents that require them to “learn to speak
their child’s language” and communicate on their terms [13]. Researchers
developed these techniques based on successful positive parenting prac-
tices in general [22]. A model that allows more for environmental con-
tributions to autism’s causation might look like parent-blaming, sparking
resistance, and stifling progress. Moreover, biological explanations argue
against environmental toxins as a risk factor for autism, helping to direct
 1 Introduction 7

parents away from cottage industries based on rejected and unproven theo-
ries that offer dangerous “treatments” like heavy metal-injecting chelation
therapy, chemical castration (Lupron therapy) bleach enemas, and vaccine
avoidance (amid other expensive or at least ill-conceived “interventions”).
Instead, biological explanations led by the neurodiversity movement help
to raise ethical concerns about the basic scientific research that dominate
autism research (such as the possibility of eugenics; see Evans, Chapter 9).

Interaction with the Medical Model

Although many claim that the neurodiversity movement simply supports

the social model of disability and opposes the medical model, neuro-
diversity activists instead acknowledge the transaction between inherent
weaknesses and the social environment [23, 24]. The social model of dis-
ability distinguishes between the core impairments inherent to medicalized
conditions and disability caused by societal barriers (e.g. lack of assistive
technology and physical infrastructure to enable someone with a mobility
disability to move where they want to go), which for autism especially
include social norms that result in misunderstandings and mistreatment
[25]. One of the social model originators Mike Oliver [26] explained that
he never advocated it as all-encompassing or intended it to replace the indi-
vidual (medical) model, but to serve as an academic-political tool to help
empower disabled people by emphasizing attention to the social obstacles
that unite us; that it has certainly done. Yet the impairment that the model
separates from disability may certainly add to any individuals’ struggles.
In practice this means that the neurodiversity movement begins with its
goal of quality of life, which includes but surpasses adaptive functioning
(e.g. self-determination and rights, well-being, social relationships and
inclusion, and personal development: Robertson [27]; see also Tsatsanis
et al. [28]), and works backward from there to address the individual and
social factors that interact to produce disability. In contrast, a “pure” med-
ical model approach would assume an individual’s “symptoms” (behav-
iors or traits) directly and specifically cause dysfunction or disability, and
work to disrupt this linear relationship by preventing or curing the condi-
tion. Yet the disability rights movement has already helped enshrine access
8 S. K. Kapp

(e.g. reasonable accommodations) and non-discrimination into law, and

medical practices have gradually changed to allow more patient and client
autonomy [29]. Indeed, social and medical models have moved toward
one another over time [24].
The neurodiversity movement’s opposition to “curing” autism has pro-
duced misunderstandings, such as mistaken assumptions that it attributes
all challenges to social injustices and rejects interventions to mitigate them.
While the movement disagrees with certain principles, means, and goals
of interventions, with those caveats, it does support therapies to help build
useful skills such as language and flexibility. It opposes framing these mat-
ters in unnecessarily medical or clinical ways; arguably all interventions
that have a scientific evidence base for truly helping autistic people’s core
functioning involve active learning (by the autistic person or others), and
therefore one might describe them as “educational”. It recognizes that
some behaviors associated with neurodivergences like autism can serve as
strengths (such as interests), as coping mechanisms for underlying differ-
ences that can prove challenging at times (such as forms of stimming like
hand flapping and body rocking, which help to self-regulate and commu-
nicate overpowering emotions, among other functions: Kapp et al. [20];
Bascom [30]), or as inherently neutral differences (such as an apparently
monotone voice or a preference for solitude: Winter [31].
While all social movements have more radical left wings, arguably the
organized, politically mobilized autism rights branch of the neurodiversity
movement largely practices critical yet reformist pragmatism rather than
revolution. The movement in some ways supports a Western biomedi-
cal model more than autism’s medical establishment and certainly more
than autism’s organized cure movement. For example, the neurodiversity
movement’s framework conceptualizes autism itself as purely biological,
as opposed to resulting from dynamic genetic-environmental interplay (as
the mainstream autism field believes and as most research suggests) or
at least in part from toxins in the physical environment (as many “pro-
cure” parents and their advocacy organizations have believed). Neurodi-
versity activists support traditional medicine for preventing and treating ill
health, such as vaccines to prevent infectious diseases and (with the indi-
vidual’s consent) psychotropic medication to treat anxiety and depression
 1 Introduction 9

(see Murray, Chapter 4), whereas beliefs in the likes of false and discred-
ited vaccine-autism links have energized radical pro-cure activists, pseu-
doscience, and fringe medicine.
Neurodiversity supporters cling essentially to autism’s diagnostic crite-
ria when challenging even mainstream critics, as we support acceptance of
official autism domains of atypical communication, intense and “special”
interests, a need for familiarity or predictability, and atypical sensory pro-
cessing, yet distinguish between those core traits and co-occurring condi-
tions we would be happy to cure such as anxiety, gastrointestinal disorders,
sleep disorders, and epilepsy. We, as do all of the authors for this book
and the latest revisions of autism’s official diagnoses ([32]; https://icd.
who.int/), generally support a unified conception of the autism spectrum.
Understanding and production of structural language now fall outside
of autism’s criteria (as a separate communication diagnosis), and neu-
rodiversity activists have likewise supported efforts to expand access to
language and communication but do not regard this as making someone
“less autistic”, unlike arguably most autism advocates. Autistic neurodi-
versity activists have defined critical autism studies not in terms of being
critical of autism’s existence (unlike many non-autistic thinkers outside the
movement), but of the power dynamics that marginalize autistic scholars,
pathologize autism, and overlook social factors that contribute to disability
in autistic people [33]. While we support moving to an alternative identifi-
cation system that recognizes autism’s nuances ([34]; Kapp and Ne’eman,
Chapter 13), such as strengths that can aide or add difficulties to autistic
people’s lives depending on myriad factors [35], the often fractious autism
community united around the need to protect autistic people’s access to
diagnosis because of the practical services and supports medical classifica-
tion can provide. While the psychiatric and clinical establishment sharply
criticized the American Psychiatric Association’s Diagnostic and Statisti-
cal Manual of Mental Disorders (DSM) for adding and expanding most
diagnoses (increasing medicalization of everyday problems) in its latest
revision (DSM-5) or for lacking validity [36], the neurodiversity move-
ment’s leading organization the Autistic Self Advocacy Network (ASAN)
worked more closely with the DSM-5 than any other in the autism com-
munity to protect access to diagnosis (Kapp and Ne’eman, Chapter 13).
10 S. K. Kapp

Self-Advocacy

The neurodiversity movement’s approach holds autistic and neurodiver-

gent people responsible not for the origin of our problems (social barri-
ers exacerbating biological challenges), but for leading the effort to solve
them. This position—responsibility for the “offset” but not “onset” of
problems—aligns with the compensatory model of helping and coping
according to an analysis [37] of a classic theoretical paper [38]. Other
identity-based social justice movements such as the civil rights movement
share this approach, which Brickman and colleagues viewed as arguably
superior because it encourages people to seek help (because it does not
blame people for problems), yet actively exert control over their lives.
Yet while they say on page 372 that the model “allows help recipients to
command the maximum possible respect from the social environment”
and enables mobilization, people oriented this way put enormous pressure
on themselves to solve problems they did not create, risking distressing
strain. Indeed, campaigners in this book noted the financial and some-
times emotional sacrifices made for their activism (Murray, Chapter 4;
Seidel, Chapter 7; see also Pripas-Kapit, Chapter 2). Movement activists
do not think neurodivergences like autism excuse abusive behavior, and
call it out (especially in intersectional ways to protect more disempowered
community members), such as educating autistic men about consent in
sexual relationships (Garcia, Chapter 17; [39]). In contrast, the medical
model holds people responsible for neither the causation of nor the solu-
tion(s) to their problems, making them dependent [38], albeit medical
and clinical clients in general have become increasingly empowered in
practice [29].

History and Introduction to Contributors

I commissioned contributors who have made significant achievements to
the development or maturation of the autistic community or the neuro-
diversity movement. I posed the same questions to all contributors for
them to consider: why and how they got involved, how they carried out
their contribution, whether it has accomplished what they intended, etc.
 1 Introduction 11

Contributors took different approaches to addressing these questions, and

while I suggested a topic (originally limited to a particular action) and
length, they negotiated their preferences and needs with me. I chose to
prioritize content rather than style in my editing, giving substantive feed-
back on drafts but deemphasizing grammar and structure, especially con-
sidering contributors’ wide-ranging educational and cultural backgrounds
as well as communication abilities, to preserve the voices of the activists
(see also Giwa Onaiwu, Chapter 18).
The chapters follow a chronological order that reveals patterns in the
growth of the neurodiversity movement over time, a historical orientation
that emphasizes where the movement and autism field have been most
active: the U.S. and U.K. (the home of all contributors except Dekker,
who lives in the Netherlands but also spends significant time in the U.K.).
These countries have had exceptional roles in pioneering mother-blaming
psychoanalytic child psychology that have unjustly blamed parents and
sometimes removed autistic children from them, giving rise to the first
autism advocacy organizations [40, 41]. Those parent-led organizations
empowered both world-leading scientific research and pseudoscience to
establish autism as a treatable developmental disability [42]. Yet these
nations also arguably hosted the birth of the disability rights movement
(in the U.S.), the social model of disability (the U.K.), and disability
studies (arguably both countries; see Waltz, 2013). Hence autistic adults
had more to resist and resources at their service in these contexts, with
similarities in various other anglophone countries and nations with high
English fluency. Furthermore, most activities of the neurodiversity move-
ment have taken place online, where people can participate internationally.
This organizational approach to the book not only reflects not wishing to
oversimplify other national and cultural contexts (e.g. Germany or Israel)
with single chapters, but also the limitations of where I have lived and my
social networks.

Part I: Gaining Community

At a time when non-autistic parents dominated autism advocacy in the

early 1990s, Sinclair (Chapter 2) led the launch of the movement and
12 S. K. Kapp

delivered its pro-acceptance manifesto mainly intended for parents, “Don’t

Mourn for Us”, helping autistic people gain an identity and communicate
in cyberspace (ANI-L) and in person (Autreat). In 1996, Martijn Dekker’s
e-mail list InLv provided an inclusive, autistic-hosted space that helped
spawn new ideas such as the term neurodiversity (Chapter 3). By 1998
Autistic activists demonstrated their ability to partner and ally with par-
ents and non-autistic professionals on early campaigns they led, such as
Dinah Murray’s “Autistic People Against Neuroleptic Abuse” (Chapter 4).
Laura Tisoncik’s autistics.org website launched that year and gave voice
to injustices such as through satire like the Institute for the Study of the
Neurologically Typical (Chapter 5), yet now “neurotypical” has become a
common descriptor for people without neurological disabilities in medi-
cal studies. Protest campaigns in response to specific events and initiatives
have mounted, such as Mel Bagg’s Getting the Truth Out website created
in 2005 in response to the Autism Society of America’s fear-mongering
Getting the Word Out (Chapter 6), along with ongoing efforts like Autis-
tics Speaking Day in response to Communication Shutdown and Autism
Acceptance Day and Month in response to their Autism Awareness coun-
terparts. The movement has grown to create annual events by autistic
activists not in specific response to those by non-autistic people, includ-
ing Autistic Pride Day launched by Amy and Gareth Nelson in 2005 and
the Disability Community Day of Mourning, begun by Zoe Gross in 2012
to remember those people with disabilities murdered by family members
and try to prevent future filicide.

Part II: Getting Heard

These activities have helped raise consciousness that the neurodiversity

movement, while arising to counter the exclusion and pathologization
autistic adults felt by organizations and conferences run mainly by non-
autistic parents, serves to create a world where autistic and other dis-
abled people are free to be themselves in a respectful and inclusive society.
Indeed, Kathleen Seidel (Chapter 7) has hosted neurodiversity.com as a
non-autistic parent, without significant protests that an autistic does not
 1 Introduction 13

own the domain name (Chapter 7). The historic archives, posts by autis-
tic and non-autistic guests on debates or issues, and Seidel’s counters to
disinformation like false, dangerous treatments for and beliefs of causes
of autism have demonstrated the movement’s alliance with like-minded
parents and impactful commitment to science.
Inspired by Sinclair’s Autreat, Autscape (Buckle, Chapter 8) provides the
longest-running ongoing example of physical “autistic space”: an annual
conference mostly by and for autistic people, which has demonstrated the
possibilities and limits of inclusion. Beginning at a similar time, the Autis-
tic Genocide Clock webpage publicized autistic people’s fears of eugenics
to prevent autism through the development of a genetic test for selec-
tive abortion, and its creator Meg Evans (Chapter 9) took it down early
mainly because of the progress of the neurodiversity movement in chang-
ing attitudes toward acceptance. During the time span between the autism
genocide clock being created (2005) and taken down (2011), ASAN led
the movement’s maturation from a sociocultural to a sociopolitical move-
ment actively part of the disability rights coalition, organizing a protest
against a cross-disability campaign that united autistic people with parents
of autistic individuals and disability rights activists alike [43].
The Academic Autism Spectrum Partnership in Research and Educa-
tion (AASPIRE) project has demonstrated the expertise of even lay autistic
people as the leading provider of participatory autism research (Raymaker,
Chapter 10), illustrating the growing reach of the neurodiversity move-
ment, as have other developments. The Autistic Women and Non-Binary
Network (AWN) has provided powerful advocacy for intersectional femi-
nism, as exemplified by its recent selection by the U.S. Library of Congress
for preservation of its website, giving access to archives for current and
future generations of advocates (daVanport, Chapter 11).
The Thinking Person’s Guide to Autism provides a network of pro-
neurodiversity and pro-science information hosted by autistic and non-
autistic parents, providing the neurodiversity movement with an influen-
tial alliance that helps to reach the critical demographic of non-autistic
parents (Greenburg and Rosa, Chapter 12). ASAN consulted on the revi-
sion of autism’s diagnosis in the DSM-5, marking a historic collaboration
that substantially affecting the core criteria and accompanying text to help
14 S. K. Kapp

maintain access to autism diagnoses and therefore needed supports (Kapp

and Ne’eman, Chapter 13).
Shain Neumeier and Lydia Brown (Chapter 14) have taken leading
roles in activism to stop the electric use of shocks as “treatment”, raising
the profile of the issue and providing strong legal and ethical arguments
that have assisted progress toward banning the tortuous practice.
Larry Arnold (Chapter 15) edits Autonomy, the Critical Journal of Inter-
disciplinary Autism Studies, a journal that not only advances the cause of
autistic people as editors and authors of new academic studies, but also
preserves key texts of the neurodiversity movement.
John Elder Robison (Chapter 16) served as the only autistic advisor to
Autism Speaks, the world’s most powerful autism organization and the
main enemy of the movement, and his resignation from his attempts to
serve as a moderating influence contributed to reforms that have begun
to soften its most contentious practices [44].
A journalist based in Washington, DC has found that a story in which
he “outed” and explained himself as a member of the autistic commu-
nity has led to opportunities to explain autism and disability politics
in neurodiversity-affirming ways, a warm reception that demonstrates
the growing public interest in autism rights and acceptance (Garcia,
Chapter 17).
Morénike Giwa Onaiwu (Chapter 18) describes the principles of and
her experience in editing the first anthology of autistic people of color,
which in part through its publication by AWN further demonstrates
the neurodiversity movement’s intersectional autism advocacy [45], amid
the broader autism community and media that often implicitly associate
autism with whiteness [46].

Part III: Entering the Establishment?

At the present time in which autism acceptance continues to reach new

heights, the neurodiversity movement has edged closer to the autism estab-
lishment, although the current status looks uncertain. A couple of current
examples from the U.K. illustrate this point. In Chapter 19, Craine tells
the story of how, following endorsement of the Autism/Neurodiversity
 1 Introduction 15

Manifesto by the Labour Party’s finance minister, Neurodiversity Labour

was launched in February 2019. This organization, led by people with
neurodivergences such as autism, ADHD, dyslexia, and dyspraxia, fights
discrimination against neurodivergent people within the Labour Party and
society. In addition, the National Autistic Taskforce (Murray, Chapter 20)
seeks to help implement the U.K.’s principled but hardly enforced legis-
lation such as the Autism Act 2009, which has provisions for the needs
of autistic adults. This autistic-led taskforce prioritizes minimally verbal
autistic people with high support needs. It grew out of the National Autism
Project, which provides access to government consultations and contacts
that could help achieve its aims. If the broader autism community, public,
and levers of power attain a critical mass of understanding and support
for the neurodiversity framework and movement, autistic people will lead
advocacy for control of our own affairs.

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 Part I
Gaining Community
 2
Historicizing Jim Sinclair’s “Don’t Mourn
for Us”: A Cultural and Intellectual History
of Neurodiversity’s First Manifesto
Sarah Pripas-Kapit

In reviewing the intellectual history of neurodiversity, Jim Sinclair’s 1993

essay “Don’t Mourn for Us” stands out as almost singularly influential
[1]. The essay was first published in the third-ever issue of Our Voice,
the newsletter of Autism Network International (ANI). Sinclair, an ANI
co-founder, based the essay on a presentation xe delivered at the 1993
International Conference on Autism in Toronto. The essay implored par-
ents not to mourn for their autistic child’s disability, but rather to embrace
their child’s differences and work to meet their needs.
Even nearly thirty years after its original publication, “Don’t Mourn
for Us” remains a touchstone for the neurodiversity movement, cited in
both casual conversations on social media as well as more academic pieces
offering cultural commentary and criticism.
The essay has served as a springboard for conversations about parental
expectations in the context of an autism diagnosis. Many autistic people
and parents cite the piece as leading them toward a path of self-acceptance

S. Pripas-Kapit (B)
Bellevue, WA, USA

© The Author(s) 2020 23

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_2
24 S. Pripas-Kapit

[2, 3]. A few activists have critiqued Sinclair for not going far enough [4].
Conversely, some parents have criticized Sinclair for an alleged failure to
understand their perspective [5, 6].
As a historian, I am less interested in arguing about the correctness of
Sinclair’s views here—although as an autistic person and advocate for neu-
rodiversity, I agree with them. Rather, I’d like to illuminate the historical
context of “Don’t Mourn for Us.” This piece will explore how Sinclair’s
work fits into the broader history of autistic people’s advocacy and public
speech.
In the interest of full disclosure, I don’t just come at this from the
perspective of a historian. I attended the event Sinclair founded, Autreat
(ANI) in 2008 and 2010. While in attendance, I briefly met Sinclair.
Currently, I am the chairperson of the Association for Autistic Commu-
nity (AAC). We sponsor an autistic community retreat, Autspace, that
continues many of the same traditions of Autreat (which met for the last
time in 2013). These experiences have undoubtedly shaped my perspec-
tive on “Don’t Mourn for Us” and Sinclair’s place in the neurodiversity
movement, though this piece is primarily intended as a historicization of
Sinclair’s body of work.
To historicize “Don’t Mourn for Us,” I will begin by looking at Sin-
clair’s contemporaries. The mid-1980s and early 1990s saw some of the
first published writings by autistic people in the English-speaking world,
including the works of Temple Grandin and Donna Williams. By look-
ing at Grandin’s and Williams’ writings, we can better understand the
radicalism of “Don’t Mourn for Us.”
Within this context, I will then analyze Sinclair’s intellectual evolution
as seen through xyr public writings. Finally, I will suggest how Sinclair
and “Don’t Mourn for Us” have shaped the neurodiversity movement
since 1993—and how the movement has developed since.

Autistic Writings and the Neurotypical

Audience
The first autistic people to write for a wide English-speaking audience
were Temple Grandin and Donna Williams. Grandin’s autobiography,
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 25

Emergence: Labeled Autistic was first published in 1986 by Arena Press,

and Williams’ Nobody, Nowhere , was first published in Great Britain in
1991 and in the U.S. in 1992. Nobody, Nowhere became an international
bestseller.
Both memoirs were radical in the sense that they introduced neurotypi-
cal audiences to the idea that autistic people could narrate their own expe-
riences and had rich internal lives. Yet they were written for a neurotypical
audience, and that shaped numerous aspects of the books’ publication and
content.
Grandin, who was born in the U.S. in 1947 and raised in an affluent
white family, enjoyed several privileges that many autistic people of her
generation lacked. She was not, however, diagnosed as autistic until she
was a teenager. Her initial diagnosis was “brain damage,” which likely
saved her from being institutionalized as a child (Silberman [7]). However,
Grandin was somewhat elusive on this point in the book’s narrative. As
the title suggests, Emergence presents the narrative that Grandin was able
to “emerge” (or recover) from autism.
Although this is not made explicit in the book’s text, Margaret M. Scar-
iano was listed as a co-author of Emergence: Labeled Autistic. Scariano’s
role in shaping the book is unclear, although Grandin has since authored
many published works as sole author. I have not been able to find much
information about Scariano, although one 2013 obituary states that she
wrote or co-wrote a number of books, including both fiction and non-
fiction [8]. But while the circumstances behind Scariano’s contributions
remain ambiguous, the book’s promotion of a “recovery” narrative is clear.
In my analysis of Emergence, I have chosen to focus on this issue rather
than the complexities of the book’s authorship.
This emphasis on recovery is made explicit in the book’s introduction,
written by noted autism scientist Bernard Rimland (Rimland became
famous for debunking the refrigerator theory of autism causation). In
the introduction, Rimland recounts his acquaintance with Grandin, reas-
suring readers that she was “really” autistic—or, in his terms, “a recovered
autistic individual” (Grandin & Scariano [9]). Rimland, who later became
an advocate of dubious biomedical “treatments” for autism, gushed about
Grandin’s ongoing recovery in the introduction. The memoir’s framing
hence implicitly became something of a how-to guide for autism recovery.
26 S. Pripas-Kapit

In addition to Rimland’s introduction, the book also includes a pref-

ace from William Carlock, who taught Grandin at a private school as an
adolescent. These two introductory pieces served the function of “prov-
ing” Grandin’s autistic status to a skeptical audience, while simultaneously
suggesting that recovery from autism was both possible and desirable.
Grandin herself suggested this narrative in the text. Emergence is rife
with descriptions of her autistic differences, including sensory sensitivities,
communication differences, and other autistic traits. Grandin, a successful
animal behavior scientist, used scientific terminology to explain autistic
differences. But one cannot help but be left with the impression that
autism is a tragedy. She described her alleged regression into autism at the
age of six months:

Mother, who was only nineteen when I was born, said she remembers me
as a normal, healthy newborn with big blue eyes, a mass of downy brown
hair, and a dimple in my chine. A quiet, ‘good’ baby girl named Temple.

If I could remember those first days and weeks of life, would I have known
I was on a fast slide slipping into an abyss of aloneness? Cut off by over-
reactions or inconsistent reactions from my five senses? Would I have sensed
the alienation I would experience because of brain damage suffered as an
unborn child—the brain damage that would become apparent in life when
that part of the damaged brain matured? (Grandin 2005)

Significantly, Grandin did not actually remember any of the events

recounted here, since they purportedly occurred when she was a mere six
months old. Rather, she created this narrative using her mother’s memories
and a paradigm of autism in which autism entraps autistic people into a
world of isolation and misery.
Although Grandin did not take a firm stance on the always-contentious
issue of autism causation, she was quite unequivocal in suggesting that
autism was a tragedy not just for her, but for her entire family. The very
first line of Grandin’s own text stated, “I remember the day I almost killed
my mother and younger sister, Jean” (p. 21)[9].
Yet the actual incident Grandin referenced was decidedly more prosaic
than this dramatic opening suggests. Grandin went on to describe how,
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 27

as a child, she threw an uncomfortable hat out of an open window in

her mother’s car. This caused her mother to lose control of the vehicle—
certainly dangerous, but hardly the dramatic tragedy first implied. From
the very beginning of the text, the tone is set. Autism is dangerous, even
when manifested in seemingly trivial things such as disliking an itchy hat.
Nobody, Nowhere is superficially quite different from Emergence. It
reveals the perspective of a decidedly less privileged autistic woman.
Williams, who was Australian, was not diagnosed with autism as a child.
Like many other autistic people who grew up in the 1960s and 1970s, she
received alternative diagnoses, including psychosis. Williams discovered
that she was autistic as an adult, after going through many years of famil-
ial abuse, homelessness, and domestic abuse in relationships with men.
Her lyrical prose gives the book a very different reading experience than
Emergence.
Yet despite these important differences, there are several similarities
between the works. Nobody, Nowhere also began with a forward from
Bernard Rimland, which echoed many of the same themes as the Emer-
gence introduction. Rimland praised the book for providing inside insights
into autism, which he valued as a researcher and as a parent. He explained,
“Much of what Donna Williams has written about the experience of
autism was already familiar to me—at an intellectual level. But Nobody,
Nowhere provides a heretofore unavailable—and alarming—highly sub-
jective appreciation of what it’s like to be autistic” [10]. According to such
non-autistic “experts,” autistic people’s internal experiences were inher-
ently alarming.
A second introduction, written by Australian psychologist Lawrence
Bartak, also appeared in Nobody, Nowhere. Bartak discussed autism from
a clinical perspective at length. As with Emergence, the multiple intro-
ductions essentially suggested that autistic people can’t be fully trusted to
narrate autism. Their words must first be contextualized by non-autistic
“experts” who can attest to the narrative’s authenticity.
This is not to say, however, that autism is presented identically in the
two narratives. While Emergence suggested that autism trapped Grandin
in an unpleasant world of isolation, Williams admitted that she enjoyed
being “in her own world” at times.
28 S. Pripas-Kapit

Although many autistic people have since come to interrogate the

notion of autistic people as being trapped in their own worlds, at the
time of Nobody, Nowhere’s publication it remained a dominant paradigm.
Williams utilizes the paradigm in many interesting ways, writing:

Everything I did, from holding two fingers together to scrunching up my

toes, had a meaning, usually to do with reassuring myself that I was in
control and no one could reach me, wherever the hell I was. Sometimes it
had to do with telling people how I felt, but it was so subtle it was often
unnoticed or simply taken to be some new quirk that ‘mad Donna’ had
thought up. [10]

Hence, Williams showed that her autistic chances—even ones that were
thought of as “mad Donna”—served a meaningful purpose for her. In this
way she anticipated many of the ideas of the neurodiversity movement,
including the popular notion that “behavior is communication.”
However, Nobody, Nowhere hardly rejected the autism-as-tragedy
paradigm in its entirety. Williams explained how she found the world
as so hostile as a child that she created two personas to help her, Carole
and Willie. She explained:

I had created an ego detached from the self, which was still trapped by
crippled emotions. It became more than an act. It became my life, and as
I had to reject all acknowledgment of an emotional self, I had to reject all
acknowledgment of Donna. I eventually lost Donna and became trapped
in a new way. [10]

Although Williams acknowledged that her response was in large part

shaped by the abuse and rejection she suffered, the narrative as a whole sug-
gested that entrapment—either in her one world or in a fictional persona
of her own creation—was the inevitable result of autism. She frequently
referred to herself and other autistic people as “trapped and frightened”
[10]. Like Grandin in Emergence, Williams expressed the hope that her
account would help others.
Emergence: Labeled Autistic and Nobody, Nowhere were not specifically
written for a parent audience. Yet in an era where first-person accounts of
autism were so scarce, it is highly likely that they played an important role
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 29

in the then-small autism parent community—the intended audience for

“Don’t Mourn for Us.”
Given the centrality of parents in “Don’t Mourn for Us,” it is worth
examining how parents are discussed in Grandin and Williams’ earlier
works. For Grandin, her mother, referred to simply as “Mother” in the
text, was a near saint-like figure. Excerpts from Eustacia Cutler Grandin’s
journal are presented at several points in the book, along with several
letters to teachers and medical professionals. Even today, the two women
frequently make public appearances together. Grandin has often credited
her mother’s decisions for her own success. (Her father appeared much
less frequently in the text, reflecting the 1950s gender roles that shaped
Grandin’s upbringing.)
Today many autistic activists would criticize Eustacia Cutler’s parenting
methods, which included admonishing her young daughter for a failure to
make eye contact. But Grandin herself never wavered in her admiration,
presenting Cutler as a loving, no-nonsense mother who provided sage
advice to Grandin throughout her life while also advocating for her needs.
Indeed, many people who have heard Grandin speak in recent years—
myself among them—have noted Grandin’s tendency to present a nostalgic
view of her childhood. This includes her mother’s strict style of parenting,
which is particularly jarring to twenty-first-century audiences.
In strong contrast to Grandin, Williams criticized her family in Nobody,
Nowhere . She movingly described the abuse she suffered at the hands of
her mother and brother: “To them, I was a retard, a nut, a spastic. I threw
‘mentals’ and couldn’t act normal. ‘Look at her, look at her,’ they would
say about a child who, to them, was either a ‘retard’ when I was in my
own world or a ‘nut’ when I was in theirs. I couldn’t win” [10].
However, Williams also empathized with her family. She went on to
write, “Looking at it from their point of view, I guess they couldn’t win,
either. My brother had probably woken up to the fact that I hardly
acknowledged, let alone accepted, him” [10].
In Williams’ narrative, the abuse she suffered at the hands of her fam-
ily becomes understandable, though not quite acceptable. Although she
rejected the idea that her mother’s coldness had caused her cognitive differ-
ences, rejecting the “refrigerator mother” hypothesis, she concluded that
her disability likely impacted her mother for the worse.
30 S. Pripas-Kapit

Williams wrote, “Though [my mother] was probably a social cripple

before I was born, I accept my share of the responsibility for making her
one, and for robbing both her and my brother of a free, more indepen-
dent relationship with each other” [10]. In a mere sentence, Williams
hence reiterated an incredibly harmful view of her disability that she has
internalized—the notion that her own differences caused discord within
her family. According to this formulation, she was largely responsible for
their problems, which included abuse from both parents and Williams’
mother’s alcoholism. This abusive home environment would eventually
lead Williams to leave her home at the age of fifteen.
Emergence and Nobody, Nowhere might have challenged the pernicious
view that autistic people lacked thoughts and feelings, but the narratives
reinforce another idea: that having an autistic child is a tragedy for families.
Both Grandin and Williams offered suggestions for parents, both
implicitly and explicitly. Emergence, for example, includes a final chapter
with a bulleted list of suggestions for helping autistic children. By and
large these were practical suggestions involving sensory sensitivity, diet,
and related issues. Although a few tips gestured toward the direction of
self-acceptance, neither writer suggested that autism was anything other
than a disability to be mourned.
Then Jim Sinclair came along.

The Radicalism of Sinclair

“Don’t Mourn for Us” came out of the autism culture of the 1980s and
early 1990s. In fact, Sinclair was friends with Williams, whom xe met
on an early online mailing list for the parents of autistic people. Sin-
clair, Williams, and Xenia Grant formally founded ANI in February of
1992, when Williams visited the U.S. from Australia to promote Nobody,
Nowhere [11]. Initially, ANI began as a pen pal program and a newslet-
ter—the same newsletter which published “Don’t Mourn for Us” one year
later.
It is clear from Sinclair’s writings in the early 1990s and later that xe
was immersed in the world of autism parents and professionals. Autreat,
the retreat Sinclair ran for more than fifteen years, grew out of these
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 31

experiences. Sinclair, Williams, and other autistic people who attended

non-autistic-run conferences found them to be inaccessible, prohibitively
expensive, and sometimes downright dehumanizing.
There were a few exceptions. In 1992, Sinclair wrote very positively of
a TEACCH conference xe attended in 1989 [12]. It speaks to the paucity
of such events at the time that Sinclair drove 1200 miles to attend the
conference. The essay, entitled, “Bridging the Gaps: An Inside-Out View
of Autism (Or, Do You Know What I Don’t Know?),” was published in a
TEACCH anthology that also included pieces from non-autistic experts
Lorna Wing and Catherine Lord [7, 12].
This 1992 piece—cited much less frequently than “Don’t Mourn for
Us”—provides interesting glimpses into Sinclair’s intellectual evolution.
More so than any of Sinclair’s subsequent writings, this essay included dis-
cussion of Sinclair’s personal experiences and autism-related impairments.
As the parenthetical part of the title suggests, Sinclair presented the autis-
tic experience largely as an experience of not knowing. This not-knowing
experience encompassed both not knowing the norms of the neurotypical
world and not knowing about one’s own autistic differences.
Sinclair reflected on xyr own experiences as an autistic child who grew
up in the 1960s and 1970s. They explained:

I’ve been living with autism for 27 years. But I’m just beginning to learn
about what that means. I grew up hearing the word but never knowing
what was behind it. My parents did not attend programs to learn about
autism, did not collect literature to educate schools about autism, did not
explain, to me or to anyone else, why my world was not the same one that
normal people live in. [12]

For Sinclair, this feeling of isolation and not-knowing started to dissipate

upon attending autism conferences. These conferences included a small
number of other autistic adults. Yet at the same time, the autism conference
world introduced Sinclair to a new type of isolation: being seen as an
Other by non-autistic parents and professionals. To them, autistic people’s
experiences were something to be studied under a microscope, like an
unusual virus. (Indeed, one sees evidence of this attitude in Rimland’s
32 S. Pripas-Kapit

introduction to Grandin’s and Williams’ narratives.) Sinclair did not care

for such attitudes.
In the article, Sinclair took care to dispel myths about autistic people.
The article’s first subheading is “Being Autistic Does Not Mean Being
Mentally Retarded,” in a point that reads to many contemporary autistic
activists as problematic in its failure to extend solidarity toward people
with intellectual disabilities. Other subheadings are “Being Autistic Does
Not Mean Being Uncaring” and “Being Autistic Will Always Mean Being
Different.”
But being different was not bad to Sinclair. “Bridging the Gaps”
included several hints at the neurodiversity ideology that Sinclair would
later articulate more fully. Xe started to articulate the idea that autistic
people’s impairments largely stemmed from societal factors, not inherent
deficits.
Sinclair pointed to non-autistic people’s assumptions as a key factor
that limited autistic people. Xe criticized the special education field for
being particularly unwilling to extend understanding toward autistics. Xe
wrote:

Not all the gaps are caused by my failure to share other people’s unthinking
assumptions. Other people’s failure to question their assumptions creates at
least as many barriers to understanding. The most damaging assumptions,
the causes of the most painful misunderstandings, are the same now as they
were when I was a child who couldn’t talk, a teenager who couldn’t drive,
and a college student who couldn’t get a job: assumptions that I understand
what is expected of me, that I know how to do it, and that I fail to perform
as expected out of deliberate spite or unconscious hostility.

Other people’s assumptions are usually much more resistant to learning

than my ignorance. As a graduate student I encountered these assumptions
in employers who had extensive backgrounds in special education. [12]

Sinclair did not specifically reference the social model of disability

(which was much less well-known in 1992 than it is today, even in dis-
ability circles). However, xe did suggest a view of autism congruent with
the social model.
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 33

These ideas would take a more fully realized view in “Don’t Mourn for
Us” one year later. In this piece, which has been referred to as a manifesto
for the neurodiversity movement, Sinclair did not blunt xyr criticisms of
parents. Xe focused on the parental tendency to “mourn” a child’s autistic
status. Sinclair stated,

Parents often report that learning their child is autistic was the most trau-
matic thing that ever happened to them. Non-autistic people see autism
as a great tragedy, and parents experience continuing disappointment and
grief at all stages of the child’s and family’s life cycle.

But this grief does not stem from the child’s autism in itself. It is grief over
the loss of the normal child the parents had hoped and expected to have.
[1]

With this declaration, Sinclair identified the source of parental grief

over having an autistic child. The fundamental cause was not the inherent
tragedy of disability, but rather the pernicious cultural assumption that
parents ought to have a “normal” child.
Such an assumption, Sinclair wrote, was damaging to both the parent
and child. Although xe acknowledged that “Some amount of grief is nat-
ural as parents adjust to the fact that an event and a relationship they’ve
been looking forward to isn’t going to materialize,” Sinclair urged parents
to move beyond those feelings. Xe stated simply, “Continuing focus on
the child’s autism as a source of grief is damaging for both the parents and
the child, and precludes the development of an accepting and authentic
relationship between them” [1].
Such sentiments are radical even today. But when we consider the rel-
evant historical context, they become even more so. Prior to Sinclair’s
declaration, the default mode for autistic people discussing autism was to
focus almost exclusively on their personal experiences. Even if they admit-
ted to enjoying parts of the autistic experience (as did Donna Williams),
previous autistic writers always made sure to acknowledge the pain and
danger that autistic people inflicted upon family members. Sinclair told
parents that their feelings of grief, while very real, weren’t the result of
autism per se.
34 S. Pripas-Kapit

“Don’t Mourn for Us” also dispelled the myth of the autistic person
as being in their own world, another trope that appeared prominently in
Grandin and Williams’ work. Sinclair explained:

You try to relate to your autistic child, and the child doesn’t respond. He
doesn’t see you; you can’t reach her; there’s no getting through. That’s the
hardest thing to deal with, isn’t it? The only thing is, it isn’t true.

Look at it again: You try to relate as parent to child, using your own under-
standing of normal children, your own feelings about parenthood, your
own experiences and intuitions about relationships. And the child doesn’t
respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means
you’re assuming a shared system, a shared understanding of signals and
meanings, that the child in fact does not share. [1]

In rejecting the “own world” paradigm, Sinclair also offered practical

advice to struggling parents. But xe asked parents to understand their
child’s perspective rather than impose their own preferences and perspec-
tive on the child.
Although “Don’t Mourn for Us” has oftentimes been interpreted as
being dismissive of parental perspectives, Sinclair explicitly acknowledged
the reality of parental grief, and the array of impairments that autistic
people can experience. However, xe strenuously argued that parental grief
should not be directed at the child. Xe wrote, “You didn’t lose a child to
autism. You lost a child because the child you waited for never came into
existence. […] Grieve if you must, for your own lost dreams. But don’t
mourn for us. We are alive. We are real. And we’re here waiting for you”
[1].
The essay also included commentary about how parent-run autism
organizations could reorient themselves to better reflect autistic people’s
needs and priorities. Sinclair went on to suggest, “this is what I think
autism societies should be about: not mourning for what never was, but
exploration of what is. We need you. We need your help and your under-
standing. Your world is not very open to us, and we won’t make it without
your strong support” [1]. Xe hence invited parents to join autistic adults
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 35

in creating a better world for autistic people—but not by demanding that

autistic people “recover.” Rather, Sinclair’s vision of neurodiversity priori-
tized the reshaping of social expectations and norms. Non-autistic parents
had a place in this movement, but it was primarily as allies to autistic
adults (in the parlance of today’s social justice vocabulary).
By choosing to take this radical stance, Sinclair sacrificed much. A
friend of mine who conversed with xem on the subject said that Sinclair
was on track to become a professional autistic speaker akin to Grandin
and Stephen Shore. After taking more radical stances on autism and neu-
rodiversity, those opportunities were no longer open. For a time, Sinclair
was homeless. Xe never found a full-time job in xyr chosen profession as
a rehabilitation counselor despite obvious knowledge and qualifications.
Yet Sinclair’s sacrifices have borne considerable fruit. Although much
has changed since the essay’s original publication, the core idea articulated
in “Don’t Mourn for Us” has continued to animate neurodiversity activism.
Sinclair changed the paradigm with which autistic adults would approach
public speech. No longer were autistic people limited to personal narratives
that relied heavily on tropes of autism as tragedy or entrapment. Autistic
people could—and would—articulate their own views independent of
parent and professional validation. That is the legacy of “Don’t Mourn for
Us.”

Sinclair, Autspace, and the Development

of Autistic Culture
Autistic culture as it exists today would be very different if not for the
considerable contributions of Jim Sinclair. However, autistic culture and
the philosophy of neurodiversity have undergone substantial shifts since
1993.
One of the most notable features of Sinclair’s early work is the extent
to which it began as a response to autism parent and professional culture.
In some ways, this is seen even in Autreat, which Sinclair designed to be
an autistic space that prioritized autistic needs [11].
Take, for example, Autreat’s famous “Ask a Neurotypical” panel.
According to Sinclair’s description at one of the Autreats I attended, the
36 S. Pripas-Kapit

idea for the panel originated as a parody of sorts. Sinclair disdained the
“ask an autistic” panels frequently found at conferences for parents and
participants. Xe had participated in many such panels, in which autistic
panelists were asked entirely inappropriate questions such as “do you have
sex?”
Xyr idea was to turn the tables. At the “Ask an NT” panel, autistic
audience members would ask non-autistic panelists the same sorts of ques-
tions. This subversive idea, focused as it was on flipping the script, was
fairly characteristic of the approach Sinclair took in “Don’t Mourn for Us”
and throughout xyr other works.
However, xe ran into a problem when trying to implement this plan.
The autistic attendees at Autreat felt that the idea was unethical, premised
as it was on asking people invasive questions in public without advance
warning. So Sinclair scrapped the idea and the “Ask an NT” panel turned
into something very different—an opportunity for autistic adults to learn
more about non-autistic perspectives in a non-judgmental environment.
(In one example of this dialogue, Sinclair asked panelists why neurotypicals
enjoy eating at restaurants. Aside from the obvious pleasures of someone
else cooking food for you, Sinclair asked, why bother with it?)
The evolution of the “Ask an NT” panel is in some ways emblematic of
autistic culture’s historical trajectory. Although it originated as a response
to parents and professionals, it has since grown and mutated to develop its
own traditions and community norms. Certainly Sinclair played a major
role in the development of autistic culture, but always in dialogue with
other autistic people.
Sinclair and ANI, the organization xe co-created, did not directly engage
in policy advocacy. Yet the philosophy xe established would form the
foundations of today’s autistic-led policy advocacy work. Ari Ne’eman, co-
founder of the Autistic Self-Advocacy Network (ASAN), explained it to me
this way: “I never would’ve founded ASAN if not for Jim. ASAN might
have popularized neurodiversity, but Jim Sinclair created it” (personal
communication, February 20, 2019).
It is this fundamental idea that is the greatest legacy of “Don’t Mourn
for Us.” Popular autism narratives of the 1980s and early 1990s suggested
that autistic people were primarily useful for our ability to provide “inside
insights” into the autistic experience. Sinclair transformed the paradigm
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 37

by suggesting that autistic people could articulate a larger vision for social
change. And we could do so without capitulating to the notion that autism
was inherently tragic.
Sinclair’s intellectual legacy extends well beyond “Don’t Mourn for Us.”
Xe was likely the first autistic person to reject person-first language, in a
1999 essay “Why I Dislike Person First Language” [13]. Xe also coined
the term “self-narrating zoo exhibit,” which described the tendency of
non-autistic parents and professionals to solicit personal narratives—like
Grandin’s and Williams’—that treated autistic people as peculiar curiosi-
ties. In all of xyr work, Sinclair was uncompromising in xyr willingness
to question dominant narratives of autism as created by both non-autistic
experts and less radical autistic representatives—the ones who were more
likely to get conference invitations and book contracts.
Given Sinclair’s emphasis on questioning all received wisdom, there is
a certain irony to the now canonical status of “Don’t Mourn for Us.” The
piece is certainly deserving of such status, but I believe Sinclair would be the
first to admit that it was by no means intended as the final word on neuro-
diversity as a philosophy. It’s particularly important to note that Sinclair’s
early work was shaped heavily by parent- and professional-dominated
autism culture—a necessary move at the time xe first wrote the essay. For-
tunately, we have now reached a point where it is possible to start creating
more of our own cultural and intellectual traditions—a process which
Sinclair began. Moving forward, I’d propose that future generations of
autistics embrace the spirit of Sinclair’s work by continuing to question,
to challenge, and to move forward with new and innovative ideas.

References
1. Sinclair, J. (1993). Don’t mourn for us. Our Voice, 1(3). Retrieved from
http://www.autreat.com/dont_mourn.html.
2. Darroch, G. (2008, July 30). Grief (Web log post). Retrieved February 21,
2019 from http://autisticdad.blogspot.com/2008/07.
3. thequestioningaspie. (2016, October 31). Revisiting Jim Sinclair—“Don’t
mourn for us”: And (some of ) my thoughts on the language of “cure” (Web
38 S. Pripas-Kapit

log post). Retrieved February 21, 2019 from https://thequestioningaspie.

wordpress.com/2016/10/31/revisiting-jim-sinclair-dont-mourn-for-us-
and-some-of-my-thoughts-on-the-language-of-cure.
4. abfh. (2006, August 9). Don’t mourn, get attitude (Web log post).
Retrieved from http://autisticbfh.blogspot.com/2006/08/dont-mourn-get-
attitude.html.
5. Morris, S. (2012, January 6). An open letter to Jim Sinclair (Web log post).
Retrieved February 21, 2019 from http://sharon-theawfultruth.blogspot.
com/2012/01/letter-to-jim-sinclair.html.
6. Thea ZebraMama. (2009, July 30). My response to “Don’t mourn for us” by Jim
Sinclair (Web log post). Retrieved February 21, 2019 from http://roosclues.
blogspot.com/2009/07/my-response-to-dont-mourn-for-us-by-jim.html.
7. Silberman, S. (2015). Neurotribes: The legacy of autism and the future of neu-
rodiversity. New York, NY: Penguin.
8. “Margaret M. Scariano”. (2013, June 30). Missoulian. Retrieved February
21, 2019 from https://missoulian.com/news/local/obituaries/margaret-m-
scariano/article_3b1c4d9a-e196-11e2-b139-0019bb2963f4.html.
9. Grandin, T., & Scariano, M. (2005, reissue). Emergence: Labeled autistic.
New York and Boston: Grand Central Publishing.
10. Williams, D. (1992). Nobody, nowhere: The extraordinary autobiography of an
autistic. New York: Times Books.
11. Sinclair, J. (2010). Being autistic together. Disability Studies Quarterly, 30 (1).
Retrieved from http://www.dsq-sds.org/article/view/1075/1248.
12. Sinclair, J. (1992). Bridging the gaps: An inside-out view of autism (or, do
you know what I don’t know?). In E. Schopler & G. B. Mesibov (Eds.), High-
functioning individuals with autism. New York: Plenum Press. Retrieved from
http://jisincla.mysite.syr.edu/bridgingnc.htm.
13. Sinclair, J. (1999). Why I dislike person first language. Retrieved
from http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/
view/OP1/html_1.
 2 Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural … 39

Open Access This chapter is licensed under the terms of the Creative Commons
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holder.
 3
From Exclusion to Acceptance:
Independent Living on the Autistic
Spectrum
Martijn Dekker

In 1985, as an oblivious and undiagnosed autistic 11-year-old with no

idea who I really was or what my life was for, I was introduced to the
amazing and captivating world of programmable home computers, who
always mean what they say and say what they mean, and expect nothing
less of you. Thus I acquired my most central and enduring identity, that
of a computer programmer. It was then that my real social life began.
Though I live in the Netherlands, I lived most of that real social life
in plain text, worldwide, in English, over a metered telephone line and a
modem, at a nice and safe distance from my daily worries. The Internet was
still far from accessible to mere mortals, so I used dial-up hobby computer
systems called BBSs, bulletin board systems.These BBSs “echoed” personal
and group email to each other by exchanging it nightly over the phone
during cheap hours, thus forming a slow-lane network called Fidonet.

M. Dekker (B)
Groningen, The Netherlands
e-mail: martijn@inlv.org

© The Author(s) 2020 41

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_3
42 M. Dekker

Eventually, I became the moderator of two worldwide Fidonet echomail

conferences.
While this did gave me a sense of accomplishment, I was living what
others call ‘real life’ without a diagnosis or a clue. As I was growing into
a young adult, I deteriorated. Along with depression, I developed what
I now know to be catatonia-like difficulties with self-direction, such as
taking any sort of initiative [1]. The depression went away later, but that
mysterious and near-total inability to “just do it!” never has.
In 1995, as my education and my offline life had fallen apart com-
pletely, the Internet became accessible to the common people. On it, my
mother and I discovered Asperger’s syndrome. Less than a year later, I
had a diagnosis of 299.00 Autistic Disorder by DSM-IV (Diagnostic and
Statistical Manual of Mental Disorders, [2]) criteria.
With nothing left to lose but my family’s love and support, and on a
self-discovery high, I went out into the new world of the ’Net. At the
time, it was nearly as textual as BBSs, but I was enthralled to find that
worldwide communication was instant instead of taking days. I found a
few mailing lists (email-based discussion groups) dominated by parents of
autistic children and professionals, plus one managed by autistic people:
ANI-L, the list run by Autism Network International (ANI), founded in
1994 and hosted by Syracuse University since 1996 [3].
By the time I entered the scene, ANI had developed a vibrant and
specific autistic subculture, with verbal stims (in plain text) and various
in-jokes involving fipples, llamas, and the like. It was quite wonderful to
see this working so well for those who fit in. Here were, after all, people
proving for the first time that autistic community is possible! But their
ways were not every autistic person’s cup of tea, and their community did
not seem all that welcoming to those with dissenting opinions. The need
for an alternative was somewhat apparent.
But in this pre-social media era, with the World Wide Web still a toddler,
starting a group of any description on the Internet was non-trivial at best.
No services existed that let you do this at the click of a button. It required
the use of server software that usually was very expensive and always needed
to be managed by an expert. Nor did I have connections to a university
or corporation that could host it for me. So, although there was just the
one autistic community, the idea of starting my own didn’t occur to me.
 3 From Exclusion to Acceptance … 43

Then I was contacted, in early 1996, by the American father of an

autistic son, who was advocating for another American autistic man who
I shall refer to as X. With a decades-long history of trauma, X had serious
behavior problems. In part, this was a conscious decision: he was fed up
with being mistreated, so, in his words, “no more Mr. Nice Guy”. But it
was also clearly the effect of a long history of institutionalization.
So he found himself banned from the few autism communities that
existed on- and offline, including the only autistic-run one. But some
people went much further: they actively spread the image of him as a
direct threat, seriously and physically dangerous, apparently to ensure he
would never get another chance elsewhere.
To me it was obvious that traumatized autistic people frequently have
problems with bad behavior. Surely, effective advocacy would require at
least making an effort to include the really difficult ones, too? It physically
hurt to see some of my fellow autistic people not only eject, but also go
out of their way to further damage someone who was already broken. My
reaction, evoked in part by my own traumatic memories of schoolyard
violence, peer rejection, and paternal authoritarianism, was visceral. I felt
and understood this man’s anger and desperation. Empathy! Much as I
disapproved of X’s methods, this reaction to them seemed so much more
harmful that, despite my usual inertia, I found myself spurred into action.
Starting an Internet group seemed impossible without connections to a
large organization, so I suggested that X try starting a BBS of his own, of
the old-fashioned dial-up variety. He had some relevant experience and I
figured that it might help him to bear the responsibility himself, to achieve
something that was his own. Aiming it at people who had been “shunned,
hated or misunderstood” due to being autistic or otherwise different, he
set up forums on various relevant topics, with a definite activist bend. It
was not networked, so I dialed in to the USA to participate at considerable
expense. The BBS never had more than five users, and after a month or
so, even they stopped coming. Whatever else may have contributed to the
lack of interest, it was clear that with the Internet growing explosively,
BBSs were on their way out.
Then, serendipity intervened. A new kind of Internet provider opened
in the Netherlands, a subsidiary of a UK provider oddly named Demon
Internet, after the English expression “to work like a demon” with a nod
44 M. Dekker

to “daemons” as in server software on Unix and similar operating systems.

They were special in not only technically enabling, but actively encourag-
ing their users to run server software—to become a full-fledged host on
the ’Net alongside giants like Syracuse University. Freeware mailing list
server software called Macjordomo had also become available. Power to
the people! The puzzle pieces fell into place.
I offered X the position of co-moderator, but at this point he had lost
interest in taking an active role. So he took a back seat as I started it as my
group. As was customary, the BBS had been divided into various topic-
based forums; I decided to keep that aspect by creating several mailing lists
dedicated to similar topics. I began to operate these mailing lists together
as a set, so members could choose their topics of interest in which to
participate.
Thus, the first entirely self-run and self-hosted autistic community on
the Internet was born in July 1996, called Independent Living (InLv), with
the Internet hostname of inlv.demon.nl (later changed to inlv.org). From
then on, until cable internet became available in 2000, I had a routine
of actively distributing group mail over the Internet through my dial-up
line in batches, a few times a day. The communication was slower than
ANI-L, but still much faster than Fidonet.
The group grew quickly. While some members were non-autistic friends
and sympathizers, often with other neurological conditions, most of us
were autistic—some recently diagnosed as adults, others seeking and
receiving diagnoses as a result of their membership, still others content
with having self-identified. In finding each other, we found ourselves.
The collective process of self-rediscovery as autistic people that we went
through as members was so intense, I stopped engaging in computer pro-
gramming altogether for a number of years. I made friends, and more
friends through friends, in various countries. Thus, after that of a com-
puter programmer, I acquired my second-most central and enduring iden-
tity: that of an autistic person. It was then that I felt truly accepted in a
community for the first time.
The text-only email nature of our community, far from being limiting
or disabling, was found to be an advantage. We were able to skip all the
social rituals and awkwardness and cut right to the chase, undistracted by
body language, timing, sensory or eye contact issues, or any of the other
 3 From Exclusion to Acceptance … 45

autism-related difficulties with socializing. In the words of one member,

the Internet was where “people can see the real me, not just how I interact
superficially with other people” [4]. This helped us support each other
more effectively. Email seemed like a natural communication medium for
us autistics, like sign language is for deaf people [5].
The notion that we lack empathy was quickly deconstructed as it became
clear that neurologically typical (NT) people had considerably less empa-
thy with us than we had with them. A lot of lifelong pain was shared
and empathized with. As part of processing those experiences, we started
developing our own theories of neurotypicality—of why these strange
people, who form the majority, do what they do. We had a bit of fun
with it; tongue-in-cheek terms like “neurotypical syndrome” and “social
dependency disorder” were thrown around. Some of us also felt inspired
to explain ourselves to the neurotypical population using our newly found
collective insight [6]. As we were so used to being misunderstood, patron-
ized, and pathologized, it was a relief to have the shoe on the other foot.
But we also started finding things in common with each other, things
that were not part of the diagnostic criteria for autism. For instance, many
of us had trouble recognizing faces to various degrees, relying on other
features such as voice, gait, and hair and clothing style to recognize a per-
son. One InLv member, Bill Choisser (1947–2016), found an obscure
medical term for this condition: prosopagnosia. It was thought to be very
rare, but the group’s experience clearly suggested otherwise. Bill popular-
ized an easier to use term for it: face blindness. Based in large part on
InLv discussions, he wrote the first book about the condition, which he
published online [7]. The book gained traction and spread knowledge on
the condition, and the term is now widely used.
Meanwhile, as people in and (mostly) out of the Netherlands began to
take note of my activities, I began to be invited to autism conferences as a
speaker. I would warn the InLv members of the impending silence when
I was about to travel, then upon arrival I would find places to plug my
laptop into a phone line and distribute the backlogged mail.
The feeling, at once grave and uplifting, of having an entire worldwide
human community inside your laptop computer, depending on your own
continued action to survive, is hard to describe. Wherever I went, they
went with me. As I boarded airplanes, the announcement “in the event
46 M. Dekker

of an emergency, you must leave all hand luggage behind” acquired an

existential level of fearsomeness.
In July 1997, when InLv was a year old, I met X in person in Min-
neapolis, Minnesota, USA as the two of us were invited to speak on the
new phenomenon of online autistic community and activism at a confer-
ence organized by the Society for Disability Studies. In person, he seemed
much more timid than intimidating. The conference speech was a success
for both of us.
But on InLv, though X continued to prefer his back seat, he was grow-
ing increasingly frustrated with the members’ self-discovery and mutual
support, which he had begun to see as spineless psychologizing. He wanted
action. The rest of us were not ready for action. He also became increas-
ingly jealous as I gravitated toward some level of prominence in certain
autistic circles. It’s understandable: where he had failed, I was succeeding.
Nevertheless, his behavior deteriorated to the point where it became
both detrimental to the group and personal to me. Mere weeks after our
conference speech in Minneapolis, I had to remove him. He and I both
know the exact reasons, and that is enough. I have avoided contact since,
but I wish him well. The group had succeeded in including him for a
full year. In the process I had learned some hard lessons about both the
possibilities and the limits of inclusion, which proved invaluable in later
years.
InLv continued without him just as the discussions had begun to gravi-
tate from the purely personal to the more political. A new idea came up in
the group, based on the evidence and lived experience that autistic brains
are wired differently from the mainstream on a fundamental level. Biologi-
cal diversity of all kinds is essential to the survival of an ecosystem—so why
should neurological diversity, which is one aspect of biological diversity, be
any different? The objective fact that neurological diversity exists emerged
as a strong argument for the acceptance of autistics and other neurological
minorities as distinct classes of people among many, who have something
valuable of their own to contribute, and who are as inherently worthy of
equal rights as anyone.
In 1998, Judy Singer from Australia, who identified as having “AS
[Asperger’s Syndrome] traits”, turned these InLv discussions into an influ-
ential sociological thesis [8] and book chapter [9], citing plenty of group
 3 From Exclusion to Acceptance … 47

members with their permission, and adding the requisite academic lan-
guage to lend it legitimacy. Thus, she is correctly credited with coining the
term ‘neurodiversity’ [10]. However, it may be argued that the American
journalist Harvey Blume, who was also an InLv member and whom Singer
cites as a frequent discussion partner, first popularized the term [11]. What
is certain to me is that InLv, due to the ethos of acceptance, inclusivity,
and rejection of social and political conformism that I imparted on it, was
able to provide the environment in which the idea could emerge.
It is important to note that InLv’s notion of neurodiversity was different
from the “neurodiversity paradigm” that many contemporary activists
subscribe to. These days it is often held that there is no such thing as a
brain that is “less” or “broken” because “all neurologies are valid” [12]. By
contrast, neurodiversity as an aspect of biodiversity includes and accepts
people with suboptimal neurological configurations. While autistic people
who would have preferred to be “cured” if possible were a minority in the
InLv community, we never excluded or denounced them.
Meanwhile, the InLv community was joined by the #asperger IRC
(Internet Relay Chat) channel for which I took over management in 1998.
It had been started in 1997 by a German man nicknamed Nox, who had
a diagnosis of schizoid personality disorder. He created the channel to be
only for people on the autistic spectrum and related conditions. I disagreed
with the exclusion of neurotypical guests and still do, but I did not feel
like I could change this after the channel had become established as what
it was. In any case it provided a way for autistic people, including many
InLv members, to have text-based conversations that are much more direct
than email.
Soon, the combination of these two communities started carrying over
into the physical world. Many “real-world” relationships resulted, and I
would estimate that at least a dozen children were born because of them,
including my own three. Amazingly, the #asperger channel survives to this
day, though people who join need to be patient as activity is intermittent.
Around the turn of the century, my own catatonia-like inertia problems
started affecting my ability to manage the group effectively. As my initial
burst of initiative petered out, it became harder and harder for me to
manage email requests in a timely manner, and new members had to
remind me multiple times and wait months before being added. Some
48 M. Dekker

never received a response, and thinking of that fills me with guilt to this day.
Thankfully, as easy-to-use mailing list and forum hosting services became
available on the web, other autistic-run communities started popping up.
In spite of all this, InLv continued until early 2013. Sixteen years is a good
run for any online community.
Probably the most significant real-life outgrowth of InLv and related
communities is the yearly Autscape residential conference (see Buckle,
Chapter 8), founded after a 2004 InLv discussion on the idea of creating
a European equivalent of Autreat. As one of the Autscape organization’s
directors, it makes me happy to see InLv’s spirit of inclusion and acceptance
continue there.

References
1. Wing, L., & Shah, A. (2000). Catatonia in autistic spectrum disorders. The
British Journal of Psychiatry, 176 (4), 357–362.
2. American Psychiatric Association. (1994). Diagnostic and statistical manual
of mental disorders (4th ed.). Washington, DC: American Psychiatric Asso-
ciation.
3. Sinclair, J. (2005, January). Autism network international: The development
of a community and its culture. Retrieved from http://www.autreat.com/
History_of_ANI.html.
4. Blume, H. (1997, June 30). Autistics, freed from face-to-face encounters,
are communicating in cyberspace. The New York Times. Retrieved from
https://www.nytimes.com.
5. Dekker, M. (1999). On our own terms: Emerging autistic culture. Autism99
online conference. Retrieved from http://www.autscape.org/2015/
programme/handouts/Autistic-Culture-07-Oct-1999.pdf.
6. Meyerding, J., KB, Clark, P., & Comm, M. (1998). Why are we so unfriendly?
Or: Hello friend, now please go away (Web log post). Retrieved from http://
www.inlv.org/subm-social.html#unfriendly.
7. Choisser, B. (1997). Face blind! Retrieved from http://www.choisser.com/
faceblind.
8. Singer, J. (1998). Odd people in: The birth of community amongst people on
the autistic spectrum: a personal exploration of a new social movement based
 3 From Exclusion to Acceptance … 49

on neurological diversity (Honours dissertation). University of Technology,

Sydney. Republished in Singer (2017).
9. Singer, J. (1999). ‘Why can’t you be normal for once in your life?’ From a
‘problem with no name’ to the emergence of a new category of difference.
In M. Corker & S. French (Eds.), Disability discourse (pp. 59–67). Milton
Keynes, UK: Open University Press.
10. Singer, J. (2017). NeuroDiversity: The birth of an idea. n.p.: Judy Singer.
11. Blume, H. (1998, September). Neurodiversity: On the neurological
underpinnings of geekdom. The Atlantic. Retrieved from https://www.
theatlantic.com.
12. Grace, A. (2015, February 24). Ten things you reject by embracing neurodi-
versity (Web log post). Retrieved from http://respectfullyconnected.com/
2015/02/ten-things-you-reject-by-embracing.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
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The images or other third party material in this chapter are included in the
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license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 4
Autistic People Against Neuroleptic Abuse
Dinah Murray

Origins
In the mid-90s I had a job as a support worker for people with severe and
multiple learning (intellectual) disabilities including autism, who had been
discharged from National Health Service (NHS)-run long-stay hospitals
into “the community.” Our training for this job was thorough and humane
in many ways, but little was said about the stacks of ring-bound blister
packs of pills kept under lock and key. A community pharmacist explained
to us how to administer the pills in the right order at the right time
with proper regard to hygiene and record keeping. Nothing was more
important, it seemed.
At first I took it for granted there were good reasons for all the pills:
after all, these people had come out of hospitals. However, after a while I
noticed that thioridazine was one of the “medications” and it rang a bell
as one of the “old, dirty” antipsychotics aka “major tranquilizers”—well-
known to cause severe movement disorders inter alia. I started looking up

D. Murray (B)
London, UK

© The Author(s) 2020 51

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_4
52 D. Murray

the other drugs, then someone left this photocopied article in the office
about the use of antipsychotic drugs with adults with learning disabilities
and challenging behavior. These disabled people were being deliberately
sedated with extremely harmful drugs.
One night the young manager, in tears, told me she’d just discovered
that one of our most severely disabled people, who had gone into the old
institution when he was 4 or 5 years old, had ridden his tricycle into the
long stay hospital where he had then lived —and been drugged with major
tranquilizers—for 40 years. We knew him as someone who needed help
even to turn over. The period when our people had been hospitalized was
a period of excited experimentation with new drugs and the doctors really
had no idea what they were doing when they prescribed doses of chlor-
promazine (an antipsychotic) to children which would later be regarded
as around twelve times the recommended maximum. I was in tears too.
I became obsessed with the medication. It was increasingly clear that we
were looking at routine, unquestioned, administration of substances that
everybody in the know knew to be dangerous, to people that everybody
in the know knew to be powerless: the rage drove work lasting into the
twenty-first century.
As I got deeper into the general research I was doing, I became more
and more horror-struck by the great range of problematic features of the
whole psychotropic prescribing business, which were stripped bare in the
power structures in which people with no information and no voice were
ultimately vulnerable. I discovered that the drugs had a negative impact on
hormones, insulin, dopamine, teeth, all drives including sex drive; I dis-
covered these drugs kill people as well as twisting their limbs; I discovered
that there was a long-term cumulative harmful impact and that the move-
ment disorders many develop include a terrible restlessness, emotional
and physical, as well as catatonia-like loss of function and uncontrollable
tongue and limb movements; that polypharmacy—multiple prescribing—
was often to counter iatrogenic impacts of other drugs; that it had long
been known that previously sane monkeys had gone bonkers after being
dosed with a neuroleptic for several months which was suddenly with-
drawn, causing not “relapses” but discontinuation syndrome, and gradual
withdrawal was strongly recommended but rarely followed; that people
were being medicated for distressing events and their signs of misery were
 4 Autistic People Against Neuroleptic Abuse 53

seen as challenging instead of them being helped to deal with their under-
standable grief and upset; that urinary incontinence was a possible adverse
effect (with huge social consequences) that was regarded as insignificant;
that lactation was sometimes triggered, even in males; that weight gain
to the point of obesity was shrugged off in the research but punished in
the kitchens by stricter diets and locked cupboards. Worse still, all claims
of “successful outcomes” were based on reductions in behavior of various
sorts—given the usual sedating effects of the major tranquilizers, their
ability to reduce behavior was unimpressive—the sedative effect wears off
after 6–8 weeks, few studies at that time lasted longer than 6–8 weeks (see
Fig. 4.1).
So I left my regular job and signed on as a relief worker, a casual worker
status that meant I could never be asked to distribute medications. This
also gave me more time for research and to develop a campaigning website.
Thanks to pharmacologist Paul Shattock who told me about it—he was
publicly concerned about the use of neuroleptics for behavior control long

Fig. 4.1 The chart clearly showed that the vast majority of claimed “benefits”
of medication in this sphere are about reducing behavior rather than enhancing
personal well-being or capacity
54 D. Murray

before his public support for Andrew Wakefield’s dubious research into
the MMR vaccine—I went to an Autism Europe Conference in Brussels
and heard about their Code of Good Practice on Prevention of Violence
against Persons with Autism [1]. Paul also introduced me there to a con-
cerned mother from the UK; meeting her at that conference was the first
necessary step toward getting some activists working together in the tiny
and unstructured group we called Autistic People Against Neuroleptic
Abuse, or APANA for short.
The point of APANA was to be an effective vehicle to raise awareness
of the harms being done to vulnerable people in the name of care, and
to penetrate some entrenched positions in huge and deep-rooted power
structures. For people with access (not the subjects of my case studies!),
the Internet proved a rich source of information about both government
and NGO thinking on these and related issues: there were consultations,
and guidelines, and that was one way to get one’s voice heard.

Getting to Work and Forming Alliances

APANA recruited two autistic people: as Chairperson, David Andrews,
who was in the process of acquiring several psychology-related qualifica-
tions; as Patron, Wendy Lawson (now known as Wenn Lawson), who was
well along a similar path. The rest of the team were all parents of adult
offspring they had seen damaged by psychiatrictreatment. I was spending
more and more time reading research (for example, [2–6]). I discovered
that an unexpected result of the hospital closures was that prescriptions
of psychotropics had gone up as neighbors of the new noisy people in the
community complained. When I looked into the old prescription records,
I found that this was true for almost everyone in the houses where I most
often worked. The institutions had eventually had a policy of reducing
medication.
There was one discovery in the files that tipped my concern from a
commitment to an out-and-out mission. A service user I’ll call Patrick,
who was on the highest neuroleptic dose I found in this group, had become
borderline catatonic. From the files it was clear that he had once been
fairly lively. Then I found a letter, addressed to senior management from
 4 Autistic People Against Neuroleptic Abuse 55

the “community” learning disability psychiatrist. She complained in her

letter that support workers had questioned her judgment that Patrick’s
medication should be increased by 30%. Since the rules that govern care
providers explicitly require them to follow all medical advice or put their
business at risk, this reproach was significant and probably got some caring
and conscientious workers into a bit of trouble. Much worse though were
the repercussions for Patrick: the psychiatrist had increased his dose by
50% after her authority had been questioned in this outrageous way;
without prompting he was no longer able even to complete the action of
putting a kettle on to boil. It is ironic that “health and safety” risk aversion
in social care settings led to routine, authorized, high-risk behavior by both
staff and management toward the people receiving their “care.”
I discovered that distinguished psychiatrist Lorna Wing was interested
in autism and catatonia, and had expressed concerns that neuroleptic pre-
scribing was sometimes implicated in its onset. So I rang Lorna Wing’s
Centre, then known as the Centre for Social and Communication Disor-
ders, in the hopes of speaking to her. She was not there that day but Judith
Gould came to the phone to deal with this unknown support worker’s
anxious query. She listened to the problem, immediately said I should
ring Lorna Wing herself and gave me her home phone number. So next I
picked up the phone and dialed that. The great Wing answered the phone
herself and was so interested and open that I trusted her at once and said
very soon after our conversation began, that all I had found among her col-
leagues was “Arrogance, ignorance, and hypocrisy”—to which, taking my
breath away, she replied with vigor, “I couldn’t agree more!” One couldn’t
hope for a better ally in this particular battle [7].

Communicating Our Message Across Many

Platforms
I decided to write up case studies of what I’d found in the files in a way
that would make the research as effective as possible. I looked at quality
of life issues and the impact on those of the ramified adverse effects of
the prescribed drugs; I compiled detailed timelines for four service users,
three of them autistic, and their life events [8].
56 D. Murray

Unfortunately, how to carry out quality of life assessments objectively

remains a vexed question to this day [9], so instead I took and followed
advice on assessing relevant costs, such as travel and staff time, in British
pounds and went back through the records adding actual costs or rule-
governed estimates of costs to the timelines.
Our website, run by my friend Sue Craig, had much factual infor-
mation, including all the illustrations to this chapter, and useful links
and ancient advertisements for old drugs and new. Canadian artist Ralph
Smith designed an elegant logo for us (Fig. 4.2). This served us well and
got the message out that Autistic People Against Neuroleptic Abuse was
an active force. Autistic activists in the USA such as A. M. Baggs (now

Fig. 4.2 Summarized comparisons of restrictive or potentially fatal effects of

psychotropic drugs prescribed for autistic adults with learning disabilities and
challenging behavior (ca 2001). From left to right, starting with the antipsy-
chotics: phenothiazines (e.g. Chlorpromazine), thioxanthines (e.g. Fluenthixol),
Haloperidol, pimozide, risperidone, olanzapine; and then various non-neuroleptic
experimental drugs for autism-related perceived problems, viz paroxetine, lithium,
carbamazepine, buspirone, naltrexone, and the beta-blocker propranolol
 4 Autistic People Against Neuroleptic Abuse 57

known as Mel Baggs) and Kassiane Sibley (now Kassiane Asasumasu) were
supportive and deepened my understanding of what it is like to be on the
receiving end of interventions designed solely for the purpose of suppress-
ing behavior which other people condemn.
Being able to brand the work as from “APANA” was I think particularly
helpful in being taken seriously rather than assimilated into the vox populi.
Mencap, the main British learning disabilities charity, agreed to circulate
the research to their consortium of service providers in this field.
It also helped that I had some strategically placed friends and allies.
David Branford, a senior learning disabilities pharmacist, was sympathetic,
and encouraged me to attend a conference he was organizing in Leicester
late last century. It was there I first encountered the “psychiatry is to real
medicine as astrology is to astronomy” meme, inadvertently shared with
me by a psychiatrist who misjudged my status until rather late in our
conversation, assuming I was a fellow clinician.
Rita Jordan at Birmingham University gave me a platform for the med-
ication issues on one of the Autism Distance Education Course weekends,
thus reaching everyone doing the course at that time. Almost all of those
were professionals in the field, some in senior positions, including people
who worked with adults. Glenys Jones was in the process of setting up
a new, practical, autism-relevant journal, Good Autism Practice, and she
invited me to submit my research for the prototype issue, published in
1999. I also got a poster presentation at the Autism Europe Conference
in Glasgow that year and Wen Lawson and/or I were there in person
throughout ready to discuss it.

Pressing Parliament and Leaning on the Law

I undertook a careful analysis of a range of medications proposed
at the time for “ameliorating autistic behavior,” and I scored adverse
effects according to their recognized frequency (using the free Med-
line database). Risperidone, newly popular with prescribers, was only
slightly less harmful than chlorpromazine at the recommended (like-
for-like) dose ranges for psychosis (see Fig. 4.3). Wenn Lawson and
myself addressed a sub-committee of the All-Party Parliamentary Group
58 D. Murray

Fig. 4.3 The APANA logo, designed by Ralph Smith

on Autism about prescribing, illustrated with Fig. 4.1. (One of the peo-
ple who heard us was Virgina Bovell, a mother of an autistic person with
learning disabilities, in whom we found a new ally despite her involvement
with behaviorism—I later came to understand that parents may be pre-
sented with behavioral approaches as the only alternative to a medicalized
attitude and recourse to drugs.)
I got views from as many as possible autistic people with relevant expe-
rience and discovered that some, but not all, were saying that at a very
low dose, they found risperidone positively helpful; that it improved their
mood and could make social encounters less stressful. If someone tells me
that they find a drug helpful and their consumption is moderate, I’m going
to see that as normal human practice. In the case of risperidone or other
antipsychotics, I liken this to accepting that a glass of wine every day may
do a lot of good, while a bottle will not. To me it is the absence of choice,
the absence of relevant information, and the inability to refuse that need
fixing. In the long run, it is worth noting that most of the people I knew
who liked risperidone at a low dose eventually developed adverse effects
that put them off—they were fortunate to have the capacity to articulate
their problems and the autonomy to make this decision.
(Having now, two decades later, read through extensive messages posted
in the last few years on mental health forums, it is clear that low dosing
with risperidone has become commonplace, especially for anxiety. It is
also clear that there is a major division in people’s experiences of this
drug, with some people greeting its effects with joy and others with real
horror. To give something as powerful and unpredictable as this to people
who are unable to tell you how they feel, still seems to me the height of
irresponsibility. People need to understand the potential risks and freely
 4 Autistic People Against Neuroleptic Abuse 59

choose to take them. Clearly that did not apply to the people in my case
studies!)
Though our message was being heard in some quarters, the extreme
power imbalance sometimes seemed overwhelming. So we decided to keep
pushing positive proposals tied to precisely referenced and cited govern-
ment papers, by addressing civil servants, administrators, and Members
of Parliament about the law with some specific suggestions that I set out
at length. These are to be found following the main text of my “Potions
and Pills” piece [8] in the longer version online.
A related line I decided to follow was to get a proper legal view pro
bono (for no fee because for the public good) if possible. Somehow I
found a deeply committed solicitor, Karen Ashton, and barrister Paul
Bowen of the Doughty Street Chambers in London, who were willing
to look to assess the legal situation vis-à-vis medical treatment that flouts
the Hippocratic Oath, Do No Harm—especially to people deemed to be
“mentally incapacitated.” They needed someone to gather the evidence
together and I gave up my job entirely for three months, during which I
created a compendium of abstracts substantiating a great variety of adverse
effects and at the same time demonstrating that reduced behavior was
the key index of “efficacy” in their use (see Fig. 4.1). This resulted in
lawyers Bowen and Ashton producing a discussion paper (available in the
online edition of this chapter), which suggested that medical treatment
can amount to an assault unless great care is taken regarding consent or
“best interests.” They proposed that the Human Rights Court “may well be
willing to exercise its power in relation to the prescribing of psychotropic
drugs, particularly where serious side-effects are well-established.” This
was circulated widely.
In 2001, Ashcroft and colleagues [10] called for better research
into antipsychotic prescribing for “challenging behaviours.” They cited
Brylewski and Duggan’s [11] Cochrane Review, as showing “over 500 cita-
tions assessing the impact of antipsychotic drugs on challenging behaviour.
Of these only three were methodologically sound randomised controlled
trials, but even these were unable to show whether antipsychotic drugs
were beneficial or not in controlling challenging behaviour” [10].
60 D. Murray

Impact
Ashcroft and colleagues frame the issues thus: “People with learning dis-
ability sometimes display challenging behaviour. This can be managed by
use of antipsychotic medication or behavioural therapy or both. There is
no solid evidence, however, that these therapies are safe and effective.”
Unfortunately the possibility that behavioral therapy may not be safe was
not pursued, nor was the possibility that a focus on behavior control can-
not preserve mutuality, create trust, or be authentically “person-centered.”
This fixation with behavior, along with skillful marketing of “Positive
Behaviour Support,” has underpinned and undermined a medical cam-
paign against the drugging launched in 2018 (see below).
Consent issues and the best interest concept were soon to be leading
themes in the Mental Capacity Act (2007), (a development to which Paul
Bowen contributed). That is a very strong piece of rights legislation in
principle, though it has thrown up some paradoxes in practice (see, e.g.,
DoLS discussion at House of Lords 2015, or this Parliamentary video
from 2018, https://www.parliamentlive.tv/Event/Index/d47bf41e-72b1-
48d8-afc5-b5727a40f05b). The MCA guidelines draw attention to the
possibility that the psychotropic effects of some medications may hinder
judgment, and there are widespread guidelines on administering medica-
tion to people whose best interests must in law be factored in. In 2006
the University of Birmingham published an attempt to address the con-
sent issues by creating a simplified symbol-based system for describing the
medications and their effects [12]. Perhaps our activities contributed to
the wider recognition of such needs, but how much long-term impact did
we have?
Maybe a bit for a while—however, see this from the Foreword of the
Faculty of Learning Disabilities of the Royal College of Psychiatrists [13]:

There is compelling evidence that a significant number of people with intel-

lectual disabilities are prescribed psychotropic medication that, at best, is
not helping them. In particular, there is a risk that doctors are prescribing
medication to treat behaviour that is an expression of distress or a mode of
 4 Autistic People Against Neuroleptic Abuse 61

communication rather than a mental disorder. Some people with intellec-

tual disabilities have difficulty communicating their emotional needs and
preferences. Therefore, doctors have a particular responsibility to ensure
that they have fully assessed a person’s potential to benefit from medication
before they prescribe. They must also check that the anticipated benefits
have occurred after they have prescribed.

David Branford, whose earlier work [5] influenced mine, co-edited this
careful and strongly worded document produced by a team dominated by
learning disability specialists.
With two provisos, this specialist report’s advice is generally clear and
strongly argues its case for greater prescribing caution. One reservation is
that the advice lumps in autistic people with all other learning disabili-
ties and generalizes that usual dosing practices will be fine for addressing
mental illness when it occurs. Much anecdotal evidence says that autistic
people often have atypical reactions including super sensitivity to drugs.
As Defilippis and Wagner [14] suggest, “Children and adolescents with
autism spectrum disorder appear to be more susceptible to adverse effects
with medications; therefore, initiation with low doses and titrating [adjust-
ing the dosage] very slowly is recommended.” Also, neither they nor the
Care Quality Commission (a public regulator of health and social services
in England) note the need for staff medication training. The latter says
(2017) “We will not consider it to be unsafe if providers can demonstrate
that they have taken all reasonable steps to ensure the health and safety
of people using their services and to manage risks that may arise during
care and treatment.” Since “reasonable steps” will of course include follow-
ing instructions from doctors, this regulation can only have a protective
impact if the doctors are also changing their practices: perhaps the current
alliance between the NHS and the behaviourists (the autism and learning
disability campaign Stopping Over Medication of People, or STOMP)
may have the power to change those.
Sadly, it seems there has been little or no real progress this century—yet
the very existence of these reports shows that the zeitgeist may finally have
penetrated Bedlam. We may have helped let it in.
62 D. Murray

References
1. Autism Europe. (1998). Draft code of good practice on prevention of violence
against persons with autism. Brussels: Autism-Europe.
2. Kiernan, C., Reeves, D., & Alborz, A. (1995). The use of anti-psychotic drugs
with adults with learning disabilities and challenging behaviour. Journal of
Intellectual Disability Research, 39 (4), 263–274.
3. Shiwach, R. S., & Carmody, T. J. (1998). Prolactogenic effects of risperidone
in male patients—A preliminary study. Acta Psychiatrica Scandinavica, 98(1),
81–83.
4. Manchester, D. (1993). Neuroleptics, learning disability, and the commu-
nity: Some history and mystery. BMJ, 307 (6897), 184–187.
5. Branford, D. (1996). Factors associated with the successful or unsuccessful
withdrawal of antipsychotic drug therapy prescribed for people with learning
disabilities. Journal of Intellectual Disability Research, 40 (4), 322–329.
6. Tranter, R., & Healy, D. (1998). Neuroleptic discontinuation syndromes.
Journal of Psychopharmacology, 12 (4), 401–406.
7. Wing, L., & Shah, A. (2000). Catatonia in autism spectrum disorders. British
Journal of Psychiatry, 176, 357–362.
8. Murray, D. (1999). ‘Potions, pills and human rights’ in opening vol-
ume of Good Autism Practice (long version). Retrieved from http://www.
autismusundcomputer.de/potions.en.html.
9. McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., &
Rodgers, J. (2018). Enhancing the validity of a quality of life measure
for autistic people. Journal of Autism and Developmental Disorders, 48(5),
1596–1611.
10. Ashcroft, R., Fraser, B., Kerr, M., & Ahmed, Z. (2001). Are antipsychotic
drugs the right treatment for challenging behaviour in learning disability?:
The place of a randomised trial. Journal of Medical Ethics, 27 (5), 338–343.
11. Brylewski, J., & Duggan, L. (1999). Antipsychotic medication for challeng-
ing behaviour in people with intellectual disability: A systematic review of
randomized controlled trials. Journal of Intellectual Disability Research, 43(5),
360–371.
12. Unwin, G., & Deb, S. (2006). Your guide to taking medicine for
behaviour problems: Easy read. University of Birmingham. Retrieved Septem-
ber from https://www.birmingham.ac.uk/Documents/college-les/psych/ld/
LDEasyReadGuide.pdf.
 4 Autistic People Against Neuroleptic Abuse 63

13. Alexander, R., Branford, D., & Devapriam, J. (2016). Psychotropic drug pre-
scribing for people with intellectual disability, mental health problems and/or
behaviours that challenge: Practice guidelines. (Faculty Report No. FR/ID/09).
Retrieved from The Royal College of Psychiatry website: https://www.
rcpsych.ac.uk.
14. DeFilippis, M., & Wagner, K. D. (2016). Treatment of autism spectrum
disorder in children and adolescents. Psychopharmacology Bulletin, 46 (2),
18–41.

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holder.
 5
Autistics.Org and Finding Our Voices
as an Activist Movement
Laura A. Tisoncik

Deep Origins: Martin Luther King Jr.

and the Fair Housing Campaign
Many have said that the first explicitly political act that emerged from the
autistic community was the website autistics.org. A few people have said
that I, as the founder of autistics.org, am the founding mother of autistic
activism.
That’s not true. While the community, at the time of the founding
of autistics.org in 1998, was oriented toward support groups, political
activism was in the air. Some persons active at that time, notably Cal
Montgomery, had roots in the broader disability rights, psychiatric sur-
vivors, and developmental disability movements, and were posting cogent
political positions on Listservs, Usenet, and other now almost forgotten
corners of the internet before autistics.org was even imagined. Nothing
arises from a vacuum, and neither did autistics.org.

L. A. Tisoncik (B)
Burlington, VT, USA

© The Author(s) 2020 65

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_5
66 L. A. Tisoncik

But if it is necessary to give credit to just one individual for the founding
of autistics.org, I know who that person is. The true founder of autistics.org
is Dr. Martin Luther King Jr. and he founded it in Chicago in 1966.
In 1966, Martin Luther King moved to Chicago, to lead a housing
desegregation campaign. Dr. King was not then seen as the harmless and
mostly fictional figure we venerate today. He was a radical agitator, hated
and feared by most white people, and considered a criminal and likely
communist by the government. The difference between MLK Jr. and
more “radical” figures like Malcolm X and the Black Panthers was one
of tactics, never of content, and no one during his lifespan doubted or
watered down his militancy.
I was nine years old. The Chicago neighborhood I came from, Mar-
quette Park, and the suburb we’d recently moved to, Evergreen Park, were
targeted for desegregation marches that summer. People in the neighbor-
hoods were terrified, and many of them prepared to “defend” the neigh-
borhoods, with rocks, bricks, and baseball bats. When the Archdiocese
of Chicago announced (in response to the campaign) that it would begin
busing African American students to desegregate my school in the fall,
violence and threats of violence against African Americans reached near
wartime intensity. A house, a few blocks away, was burned to the ground
amid rumors (probably false) that it had been sold to an African Ameri-
can family. And gangs of teens had begun patrolling the local mall with
baseball bats, seeking out African Americans who dared to go shopping
in a white neighborhood.
It was a time when virtually every family watched the 6 p.m. news
together, and so I knew about the civil rights movement and the growing
anti-war movement. I had not yet formed an opinion about current events,
or even an opinion that I should have an opinion. All of it had seemed
like stories of faraway events unrelated to my life, told on a 12′′ black-
and-white cathode ray tube in the kitchen.
But during the tumult of that summer, a pattern was emerging. The
same persons who were carrying out acts of violence against African Amer-
icans were also the worst of my bullies. The few brave families who dared
to volunteer as host families for African American kids about to be bused
to my school were also among the few who were kind to me, the weird
crazy kid in the neighborhood. I did not yet understand much about these
 5 Autistics.Org and Finding Our Voices as an Activist Movement 67

issues, but I knew which side my enemies were choosing. I knew, therefore,
which side had to be my side.
I understand racism is not the same as bullying, any more than ableism
is bullying. Most of the methods any -ism uses to maintain a power differ-
ential between the privileged and the oppressed are subtle, hard to name,
and even harder to prove. Many of the methods are baked into the way
things are done, so that they can’t be uprooted without questioning fun-
damental assumptions about how the world should work. But in the end
every -ism will resort to overt violence, if it must, to maintain itself. The
pattern I saw as a kid came about largely because the worst people are
inclined to poly-bigotry: they hate everyone not evidently of their own
kind.

My Activist Past

Over the course of the next few years, activism became my perseveration
and my social crutch. I was awkward and fearful to the point of panic
in most social settings, but as an activist I could talk to anyone, speak to
any crowd, and act fearlessly. I organized my high school’s underground
newspaper. I became involved with the Chicago area working-class youth
movement Rising Up Angry. I read book after book of left-wing theory,
identified as an anarcho-syndicalist,1 and joined the radical syndicalist
union, the Industrial Workers of the World. I protested against military
recruiters at my high school, I distributed leaflets for the defense committee
for the imprisoned African-American anarchist activist, Martin Sostre. I
picketed for the United Farm workers union, and I sat on the train tracks
in Colorado to shut down the Rocky Flats nuclear weapons facility. I came
out as a lesbian in 1974 in my first year of college, and I plunged myself
into lesbian and gay politics because, even if I hadn’t a clue how to meet
women, I did know how to promote political causes. When I was engaged
in activism, I was almost normal, or at least I was useful enough for the
cause that my shortcomings could be overlooked.

1A left-wing anarchist who sees revolutionary industrial unionism as the means workers can use to
overthrow capitalism.
68 L. A. Tisoncik

I was less functional than frantic, less social than busy, and everything
I did was as much crushing as it was a social crutch. Sometimes the stress
won. Sometimes the weird screwed up everything.
I had a secret. It wasn’t much of a secret, but I did my best to hide it. I was
a childhood schizophrenic—a crazy person. One of Bruno Bettelheim’s2
former students had said so. It was a time I wished I could forget but never
could. A very bad time, imprisoned in a very cruel place. I knew that crazy
people, too, were organizing, and I supported what they were doing, but I
did not want that label around my neck because I wasn’t crazy, not the way
they said I was. I didn’t see anything or hear anything and I knew perfectly
well what reality looked like. But I wasn’t normal. I couldn’t hold a proper
conversation, or have a girlfriend, and getting a telephone call—not the
content of the call, the mere fact of its ringing—could turn me into a
blithering panicked mess. A lot of things could do that. I was always on
the edge of panic. It was during one of my falling apart times in college,
when I could not avoid the open secret that I was dysfunctional, that I
came into contact with the office of students with disabilities and, from
there, the disability rights movement.

Finding Out About Autism

Fast forward decades later: Though the activism of the 1960s and 1970s
had faded, I was still a committed activist. Activism was no longer a crutch,
but an ethical commitment, to right what was wrong and to side with the
weak against the predations of the strong. I was much more content as a
human being, much less stressed, though the weird was never far away. I
could answer telephones though I hated them and occasionally destroyed
them in frustration. I even figured out how to get into relationships, more
or less, though I had no idea how to sustain one.
In the mid-late 1990s, on the early World Wide Web, search engines
were absent or limited in power. It was customary to perform a search

2 Bruno Bettelheim used fraudulent credentials to misrepresent himself as a psychologist and to

obtain an academic position at the University of Chicago. He was exposed for plagiarism, false
credentials, and abusive treatment of students after his death in 1990.
 5 Autistics.Org and Finding Our Voices as an Activist Movement 69

by finding a website about your subject matter, then to follow links from
website to website until you found what you were interested in.3 What
I was looking for that day was electronics parts. Several jumps into the
search, I found a home page with a number of useful links, plus links to
something even more desirable than electronics: data I did not know.
I love to collect information. If I let myself, I’d spend the rest of my
life collecting new facts. So after I explored the links to electronics parts
companies, I clicked back to the website where the author had said he had
a syndrome I’d never heard of called Asperger’s Syndrome. The link led
to a website created by a parent of a child on the autism spectrum. I read
on…
So that was what I was 4
I plunged myself into the early autistic community, which was spread
out over two mailing lists, a few Internet Relay Chat (IRC) channels,
Usenet, and a scattering of websites. The focus of the early community
was largely self-help. But I, like Cal before me, could not help but apply
political analysis to our circumstances.
Political analysis is about power: understanding who has it, who doesn’t,
how the powerful have taken power over others, and how those rendered
powerless can reclaim it. Once you learn how to understand injustice in
political terms, you cannot help but apply political analysis everywhere you
see human suffering. The skill set works nearly everywhere, because nearly
everywhere, when you find a group struggling against disadvantages, you
find the same dynamics.
Autistic persons are disadvantaged almost from the moment of birth.
Our power to determine the direction of our lives is taken by presumptions
about cognition and perception that simultaneously ignore our abilities
and make unreasonable demands upon our disabilities. We are rejected
by our peers, whose bullying is not merely tolerated, but encouraged, by
adults, who themselves may join in the bullying. We are often rejected by
our families, and many of us are murdered by them. We are placed into
schools and institutions whose very purpose is to wipe us of our identity,

3The Web was a much smaller place then, so this was not as impractical as it would be today.
4 LaterI sought a professional opinion, and the professional thought my childhood development
was a closer fit to PDD-NOS. According to the diagnoses of the day. Whatever. We are all Autism
Spectrum now.
70 L. A. Tisoncik

and whose every “treatment” and “care” is an act of violence against who we
are. If we do find work, we are target number one for workplace bullying,
and for being fired for autistic traits, regardless of our performance. We
are first to be targeted by criminals and among the first to be targeted by
police, at least in the US, where every year unarmed autistic people are
among those shot by police, and where autistic people are so often stopped
while going about our business we have taken to calling this the crime of
“walking while autistic.” We are more likely to be the victims of violence,
yet we are portrayed in the media and by charities “raising awareness” as
dangerous perpetrators of violence. Above all we are isolated from society
at every stage as the odd, the weird, the other.
But no matter the exact life path we find ourselves on, oppression
comes down to others holding or aspiring to hold undue power over
us. Oppression is always the same story, and the same struggle, of the
powerless against the powerful. “Injustice anywhere is a threat to justice
everywhere” wrote the Great Agitator, King [1], “We are caught in an
inescapable network of mutuality, tied in a single garment of destiny.”

What Led up to the Creation of Autistics.Org

I joined the mailing lists and IRC channels where the early online autistic
community congregated, including the main mixed parent and autistic
IRC channel, #autism on Starlink IRC. There I came into conflict with a
few parents over the patronizing and often demeaning way autistic adults
were treated in the group (I was, after all, in my 40s, older than many of
the parents who patronized me). When I circulated a petition requesting
that one parent be removed as an operator for his open hostility toward
autistic people on #autism, I was banned from the channel. So I started
my own channel for autistics and parents, #autfriends.
#Autfriends quickly becomes a popular channel. In response the owner
of #autism approached the owners of a channel for autistic persons and
persuaded him to order me to close down #autfriends and tell everyone to
rejoin #autism. When I refused, pointing out that he had no authority to
give me or anyone else any orders outside of his own channel, and stating
again that management at #autism tolerated open abuse of autistic people,
 5 Autistics.Org and Finding Our Voices as an Activist Movement 71

the autistic channel owner banned me from his channel and mailing list,
and sent the log of that private conversation to the IRC operators at
Starlink IRC, possibly through the owner of #autism.
Never fear an opponent who goes too far. It is at times like this, when
one’s opponents overreach, that they grant you power, much as when an
attacker lunges at a judoka, the force of that attack becomes the power the
judo player can use to defeat the attacker. Almost every time a political
action I was involved in had succeeded, it had been in part because of
gross overreach by the other side.
This attack on #autfriends gave us the moral power and the outrage to
create autistics.org. And of course, #autfriends reopened within minutes
of the ban on Dalnet, because trying to ban an idea from the Internet is
one of the more futile acts imaginable.

Sometimes It Is Allies Who Work Against You

I do not want to go into too many details about the autistic persons who
worked with #autism to try to destroy us. I have no reason to stir up
ancient conflicts with people who are still around and active in their own
ways. No matter what the disputes are between ourselves, it’s important to
keep one’s focus: we are not our own enemies, to be fought to the death,
and no one is free from mistakes. What remains important about that
incident is the truth that when one takes a stand for what is right, it is
often against the objections, not just of your enemies, but of your allies.
Anyone subject to injustice is rightly fearful. It seemed to be a miracle
enough that autistic adults with the means to access the net were breaking
their isolation and talking to each other. The autistic community was
young, small, and fragile. It is understandable why anyone who had been
through what we had endured might not have wanted to take any chances,
however remote, that this thin connection to humanity might be broken.
But you can’t preserve a community by tolerating hostility toward it,
and you can’t fight injustice by succumbing to your fears. You have to learn
to take a deep breath and will yourself past a pounding heart and sweaty
palms to take your stand, to disrupt things as they are, and you have to
have confidence in the power of truth. I had learned, over decades as an
72 L. A. Tisoncik

activist, to overcome fear. My objectors had little experience as activists

aside from, to their credit, playing an important role in the early autistic
community.
I’d been attacked more than once for my political activism. I was one
of a scant dozen LGBTQ activists picketing outside a nightclub in 1976
when a much larger group of hostile counter-protesters rushed the thin
police line separating us. I’ve had local police look for any way to arrest
me on anything, real or not (I survived, but one of my fellow activists at
that time was framed with heroin possession). I’ve been knocked down
and dragged out of a public meeting by an official who did not like my
political cartoons, with the culprit slamming the door shut on my arm,
hard, after he was done (and then was charged afterwards, though charges
were dropped when the culprit bragged about what he did to the press).
I’ve lost a job. I can’t even begin to count the number of death threats I’ve
gotten over the years. I’d even survived an attempt to set fire to my college
dorm room.
In comparison, the attacks against #autfriends were silly, and there was
never a question in my mind to persist. The only strong impression they
made upon me was how, if I had been seen as a middle-aged adult, gray
hair and all—in other words, the way I was seen in the real world—none
of it would have happened. It would be seen as an outrageous violation of
boundaries to order an independent adult not to express an opinion, even
in private, on the Internet, as my opponents tried to do. But I was being
treated as the defective child that so many of the regulars in #autism imag-
ined autistic adults to be, and so in their minds there were no boundaries.
Letter from a Birmingham Jail was an open letter, not to enemies of
the civil rights movement, but to supporters who objected to Rev. King’s
tactics. “History is the long and tragic story of the fact that privileged
groups seldom give up their privileges voluntarily,” King wrote to his
critics who had argued for negotiations instead of protests. “Individuals
may see the moral light and voluntarily give up their unjust posture; but
as Reinhold Niebuhr has reminded us, groups are more immoral than
individuals.” Politely asking the operators of the Judge Rotenberg Center
to stop torturing inmates will make little headway, as all of their interests,
and that of the many other centers of power that oppress autistic people,
lie in the direction of continuing to do so. But picketing the home of the
 5 Autistics.Org and Finding Our Voices as an Activist Movement 73

head of the US Food and Drug Administration to demand that shock

devices be outlawed (as the disability rights organization ADAPT, in an
action organized by Cal Montgomery, did recently) can begin to dislodge
that evil. And before you can get to political action, you need to give voice
to truths not spoken.

Autistics.Org

Autistics.org came directly out of this tumult around #Autfriends. It was

envisioned as a compilation of support and resources for autistic adults,
in contrast to providing resources only for parents of autistic children
as #autism did. But, even as such a compilation proved too difficult for
us at that time, inspired by the outrageousness of the attacks against us,
speaking truths not spoken became our mission.
One of our more popular truth-telling sections was ostensibly a medical
institute operated by autistic researchers, the Institute for the Study of the
Neurologically Typical (ISNT). ISNT turned the tables on the dehuman-
ization done to autistic people by autism researchers. Several contributors
to that site picked apart characteristics of neurotypical individuals in the
same patronizing, pathologizing, voice in which traits commonly held by
autistic people are described, with feigned obliviousness to how such traits
might also be useful, and no concession that neurotypicals might not be
carbon-copy identical. The point of ISNT (if I can presume to speak for
multiple authors here, though I do think this was a universal goal among
us at that time) was to shine a light on how we are treated. Some people
to this day take it literally as an assertion of autistic superiority, which
leaves me wondering how deeply ingrained are their assumptions about
our supposed inferiority, that they cannot recognize satire.
Understand, though, that I am not upset about claims of autistic supe-
riority, even though I don’t believe in anyone’s intrinsic superiority. Every
oppressed group struggles to reclaim a sense of intactness and worth, and
phases where some members of the group claim superiority and even
attempt to separate from the mainstream, “inferior,” society are a nor-
mal stage in the reclamation of human dignity. We don’t need to worry
74 L. A. Tisoncik

about oppressed groups with little to no power singing their own exclu-
sive praises, so much as we need to worry about the oppressors, people
who have actual privilege and who wield real power, who drive oppressed
people to that degree of exaggeration in search of their own worth and a
little space where they can feel safer.
Another popular feature was the graphics we produced. One of my life’s
proudest accomplishments was designing the original “I am not a puzzle/I
am a person” graphic with a human-shaped puzzle piece inside a red circle
crossed with a slash—the “not” symbol used on road signs. The original
still hangs on my living room wall. Every time I see this design reused,
probably by people who know only that it is a classic image of the autistic
civil rights movement, I am reminded that I do have children who will
carry on the values I imbued them with long after I am gone: that graphic
is one of my progeny.
We encouraged autistic people to write for our library, where we posted
essays that did anything but reaffirm that we were defective children whose
job it was to obey. It was in the library where we most clearly spoke
truths that had not been often said: that almost all autism treatment is
based on false models of autism, that the institutions that have grown up
around autism engage in violence, sometime subtle violence, and often
overt violence, against autistic people in order to obtain compliance, that
parents are often part of the problem—that bearing an autistic child makes
no one, ipso facto, a saint, and that actual parents of autistic children are,
if anything, more inclined to engage in abusive behavior toward autistic
persons than the average parent, as illustrated by the many cases where
parents of autistic children murder their own children. Of course, there
are also many allies of ours among the parents of autistic children. The
point is that no one automagically becomes an ally by virtue of merely
existing—if you want to be an ally of any oppressed group, and you have
privilege, you have to choose to be an ally, educate yourself, and work at
it. Just thinking that you deserve to be counted among the good guys is
always insufficient.
 5 Autistics.Org and Finding Our Voices as an Activist Movement 75

The End of Autistics.Org?

I began this adventure in middle age at a time when I was beginning to

have significant health problems, and aging is no friend of chronic health
issues. Eventually I could no longer maintain the website. I put it first into
an archived state, trying to preserve what was already there. Unfortunately
over time even this has decayed, so that the domain autistics.org currently
links to an empty directory and autistics.org lives on only at the wayback
machine. I still have the files, and if I have the opportunity I will try to
restore them. But I am looking for people who would like to continue
what we started. I don’t consider autistics.org dead, and I certainly don’t
consider the domain to belong to me personally (as you might imagine I’ve
had many offers to buy the name from parent-led charities and commercial
entities), but to the autistic community. Perhaps the domain autistics.org
will rise again, under the leadership of a new generation.
During the years when autistics.org was actively maintained, we were
anything but organized. Initially we tried to operate the website on shared
hosting, but the volume of traffic got us shut down, more than once. So we
moved the site to the cheapest dedicated server I could find. I tried (and
sometimes failed) to manage the server, on the strength of having been
an early adopter of Linux. Amelia (Mel) Baggs wrote prolifically for the
website. Joelle Smith tried to make sense of the mess I sometimes made
of Unix. Phil Schwarz was around from the beginning to nearly the end.
Many others contributed, technically, financially, and through content. I
apologize that I don’t remember all of your names, and almost certainly
there would not be space here to give everyone credit. Feel free to point
to this article and tell others “I was there,” because what you did changed
the world.
We are tied in a single garment of destiny. Autistic activism is but one
branch of an eternal great struggle, to set right what is wrong, to lift up
those who have been pushed down, and to make space for joy in this
world.
76 L. A. Tisoncik

Reference
1. King M. L., Jr. (1963). Letter from Birmingham jail. Retrieved April 16, from
https://wikilivres.org/wiki/Letter_from_Birmingham_Jail.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 6
Losing
Mel Baggs

June 30, 1995.

Alone. In a bare room. For new people. They’ve left me here while they
do my paperwork. First time in a mental institution.
For hours, I explore every inch. The unbreakable window looks out on
an overgrown courtyard full of windows. There’s a small circular hole with
an oval impact crater. I wonder what happened. I find some graffiti on the
bed, where nobody could see it without lying on the floor. It reads, “FOR
THE ONES WHO DIDN’T MAKE IT.”
Throughout the wait, I become aware I still exist. I haven’t disappeared.
I agreed to admission because I thought disappearing might be easier than
suicide. It didn’t work. I’m still here.
Crazy people are supposed to disappear. People disappear when they go
in the front door of an institution. But I’m still here. I don’t understand.
I’m afraid. I often get things wrong. I know in my bones I’ll never be

M. Baggs (B)
Burlington, VT, USA

© The Author(s) 2020 77

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_6
78 M. Baggs

normal. I must be crazy. But crazy people in institutions vanish off the
face of the earth. Everything in my whole life has told me this.
The whole world can’t be wrong. Institutionalized crazy people disap-
pear. I’m crazy, I’m in an institution, yet I still exist. Something has gone
wrong. I must’ve screwed up if I’m still here. My innards twist with a mix-
ture of worry, guilt, and frustration. Underneath, a bottomless, nameless
dread. I’m still here, can think and feel, am alive, am whole, am suffering,
am aware. Something somewhere has gone terribly wrong. I don’t know
what to do.
The most disturbing thing I’ve found in this room isn’t the starkness,
the unbreakable glass, the hole, the graffiti, the weight of untold stories,
or the location. It’s myself. I’m still here.
June 30, 1995.
Saint John’s Autism Listserv. Known in the autistic community as ADH-
L—Academic Dick Heads List. People debate whether some people with
developmental disabilities belong in institutions. Cal Montgomery writes
an email about why institutions are bad and nobody belongs there. Things
move on. Cal believes he’s lost the argument.
Fast forward to my early twenties. I debate people who think some of
us belong in institutions. I’m different, they say. I’m a different kind of
person from those people who slam their heads against walls.
I remember that first time in a mental institution. I discovered that
slamming my head against a wall led to being tied to a table until my arms
and legs went numb, then injected with a drug that immobilized me so
much I couldn’t open my mouth. They have no idea.
I read archives of the Saint John’s autism list. I do that: I try to find
the roots of things, things that happened before I was around. I find Cal’s
1995 message:

<redacted> wrote: (original message by <redacted> in italics, Cal’s com-

ments in normal font)

I worked for over 5 years at the Eunice Kennedy Shriver Center for Mental
Retardation which is located at the Fernald State School just outside of Boston,
Ma. (this is where Christmas in Purgatory was filmed). I worked…
 6 Losing 79

I have worked for nearly 5 years in various staffed apartments in the com-
munity, some of whose residents used to live at Fernald, Wrentham, or
other state schools. I have been on the Fernald campus only once.

…under a contract to provide the medical care for all the residents at all the
state schools in Mass. I became very familiar with all of the facilities, most of
the residents, and married one of the staff. Like any…

I am intensely familiar with the people who live in the staffed apartments
where I have or do work, especially since I generally work with people with
several disabilities, or with severe or profound MR [mental retardation], or
both. I know fewer people than you do, but probably far more intimately.
I am not familiar with any of the large institutions, but I do know a wide
variety of current and former staff both in the state institutions and in the
community residences.

…large facility, it was not what it could have or should have been, but it
had improved quantum leaps from when it was filmed. And no one has been
admitted to them since the mid 70’s. Most of the staff are kind, and…

That is true.

…caring individuals who really grew to love the people they cared for and
treated each of them as individuals. Many of the residents had been placed…

I cannot say anything about “most” since I don’t know enough people. But
while some of the staff at institutions are kind, some are truly cruel. I know
this from observing former State School staff who have obtained jobs in
community-based programs, from hearing stories from former State School
staff who were horrified at what they saw, and from hearing stories from
former State School staff who fondly reminisced about beating up residents
of the Schools, or dropping water balloons on people trying to navigate icy
paths, or … Some of the things that people have told me about almost
proudly would make you sick.

This is not to say that you don’t get some of these people in the community-
based programs, as well. But I have worked for a number of the agencies
around here and have done relief shifts in others, and I have yet to see the
80 M. Baggs

acceptance and approval of this sort of behavior that I hear existed in some
sections of each of the Schools. In the staffed apartments, there is more
monitoring—from families, housemates’ families, and neighbors, if from
no-one else—available.

I have worked with clients who had nightmares about the School they grew
up in, who refused to visit with friends who still live in cottages on campus,
because they will not go to the campus, and who will not even stay in the
room with you if the word “Fernald” or “Wrentham” comes up. (This is
clearly the more verbal end of my caseload.)

…there as children by families who had been told to forget that they had ever

been born. This was the prevailing advice from the professionals in the

40’s and 50’s. They may not now have families who want to or who are able…

That is true.

…to care for them. The functional level of some of those individuals is…

That is true. But there are (or should be) other options. Other options can
be found, if we make finding them a priority.

…breathing. The staff work very hard with them and rejoice when a resident…

I have never ever met a person with MR whose functional level was breath-
ing. And, as I say, I have been working with people with severe or profound
MR full time (sometimes two jobs simultaneously) for 5 years and I have
worked with others dating back to when I was 12. I *have* met many peo-
ple whose abuse or mistreatment or neglect was rationalized because “he’s
retarded and doesn’t understand” or “his level of functioning is so poor
that there’s nothing we can do for him.” I have worked with people who,
according to charts, don’t communicate, but who in fact get a great deal
across, consistently (same methods, same message received), to people who
know them. I have *not* met anyone who is able to provide medical care
for as many people as you say you have who has had the time to get to
know those people well enough to accurately assess their functional level,
 6 Losing 81

so I’m assuming you are relying on other people. Given the facts that I’ve
seen a lot of data fabrication from staff who used to work at State Schools,
that I’ve seen wildly inaccurate assessments in charts of people who have
come out of State Schools, and that the staff at State Schools may have been
working in a 2:20 or lower staff:resident ratio in any case, I tend to doubt
*any* assessment of functionality that comes out of those places. They are
often simply wrong.

…they have cared for and worked with learns to sip from a cup or smiles. The
staff do their best to make it as good a place as they can.

I am certain that many, and possibly most, of the staff, do. That does not
mean that they are capable of making it a good place. Most people do not
want to go live in a nursing home, no matter how hard the staff try to make
it a good place to be.

Remember 15 years ago when the state psychiatric hospitals were closed in many
states. The persons responsible for the closings did it with the best of intentions
but the closings resulted in problems and mistreatment of the former residents
that were much worse than any treatment they could have ever received in the
facility.

For some of the former patients of State Hospitals, this is true. For others,
freedom from the Hospitals freed them to get their lives together (yes, I
do know such people). In any case, it was very very poorly planned and
executed. There is no denying that. But that does not mean that such a
move has to be poorly planned and executed.

This is my fear of what may result from the closing of these other facilities. Will
proper care be taken to insure that the tragedies will not happen again? Before
closing the facilities are appropriate…

Well, that is the responsibility of those of us in the community, isn’t it? That
is the responsibility of you, and me, and my neighbors (who are clearly not
going to take on that responsibility—there is a great deal of hatred for
people with disabilities around here).

…residences and treatment in place for all of who are those being uprooted?
82 M. Baggs

It isn’t enough to just keep saying, we can’t close the Schools because we
don’t have appropriate places to put people. We need to look at the fact
that direct care staff in Massachusetts have not received Cost of Living pay
adjustments in about seven years, and that some could make more money
on Welfare [sic] than they can at their jobs. So capable, competent, or even
trainable people are not being attracted to these jobs. We need to look
at the fact that Massachusetts does not mandate adequate human rights
trainings so that these staff don’t even know what they are supposed not
to do. We need to make licensing a process that reflects more than how
well the paperwork is kept. QUEST [Quality Enhancement Licensure and
Certification Survey Process and Tool, a survey and certification process for
providers of services for people with developmental disabilities] is a start.
Recent changes in the rules for medication administration are a start. We
need to make appropriate residences a priority instead of an excuse.

Remember, for most of these individuals this is the only home they have ever
known. And while being a resident in a state facility may not be the best life, it
is better than the streets.

Just because they’ve never known a better home, or a home with more actual
choices, does not mean they don’t deserve to know one. And just because
there are things that we (as a society) could do that are worse, does not

mean that we do not have an obligation to do better.

Just my opinion, but an opinion based upon an intimate knowledge of the state
facilities in Massachusetts.

As mine is based on knowledge of group homes.

Cal

I’m floored. The same day I entered that place, Cal said people like me
don’t belong there. Everything connected. Someone was on my side, even
though I didn’t know. The arguments I’m having now were going on before
I knew the community existed. I was exactly the person being discussed:
 6 Losing 83

an autistic person in an institution while people were arguing whether we

belonged in institutions.
I order my records. They come in a giant box. I’m shocked. I’m not
always aware how people see me. The papers have words I never knew peo-
ple said about me: Low functioning. Severe and complex developmental
disability. Unsalvageable. Violence. Headbanging. No future.
A group of autism parents attack an autistic woman named Michelle
Dawson. They say she’s not autistic. They target her viciously. I’m part of
the response.
I describe myself in third person, using the most pessimistic terms
professionals used on me. I reveal I’m that person, that I’d far rather have
Michelle Dawson, Cal Montgomery, Laura Tisoncik, Joelle Smith, or
Larry Arnold, speaking on my behalf than these parents. I call it “Past,
Present, and Future.”
The Autism Society of America puts out a website called “Getting the
Word Out.” It uses black-and-white stock photos and tragic language to
describe us. They say our existence destroys our families. They’re “spread-
ing awareness.”
I write a parody based on “Past, Present, and Future” called “Getting the
Truth Out.” I take black-and-white selfies, mash together every negative
description professionals have used on me, then reveal who I am, what I
think, what issues we face, and why “Getting the Word Out” harms us. I
emphasize how you can make anyone look terrible if you describe them
selectively.
I ask others to contribute their photos, selectively negative descriptions,
and actual opinions [1]. But I’m the only one. Instead of a website starting
with multiple pictures you can click, it ends up just me.
“Getting the Truth Out” becomes better-known than I expect. I remain
unaware of the overall effect this website has had.
What I remember is people:

• Not grasping it was a parody, especially after the ASA took “Getting
the Word Out” down.
• Thinking I meant it as straight autobiography.
• Not noticing I was highlighting the dangers of using a selective patho-
logical description of anyone.
84 M. Baggs

• Thinking the selective descriptions and stereotypes must be true, or I’m

claiming they’re true.

But the message was what I got from Cal: Those of us making the
online arguments, and those of us described pathologically, can be the
same people.
I’m not a different person than the scared child who found she still
existed despite being in an institution. Who slammed her head against
the wall of that room until brutally restrained. Who attracted pathological
descriptions that stripped her of her humanity and future. I didn’t become
a different person once I started saying, “Institutions are bad.”
Every person who could be described as an autistic child banging their
head on the wall of an institution, is a hell of a lot more than that. It
conjures a stereotype, a story. But it’s not a type of person. It’s more how
others see us than who we are.
I’m not good at knowing the impact of my writing and videos. Just as
Cal thought he lost the argument in 1995, that’s how I assumed things
went with “Getting the Truth Out.” I thought people hadn’t understood
what I was trying to say, that I’d failed to convey my message.
From what people tell me that’s not true. Yeah, lots of people misun-
derstood. But lots of people got the message. They affected others, who
affected others. Everything we do has ripple effects we may never know.
Maybe the day I put up that website, some child described in similar words
was in an institution. That child may discover my writing and make the
same connections I made when I found Cal’s writing. You never fully
know the impact of your own actions. Some of it may stretch beyond
your death.
In writing this, I’ve done my usual: Described specific situations, in
detail. But I didn’t write this to tell my story. Each thing I mention can
apply to many people and situations that aren’t identical to the one I
describe. That’s how all my writing works: I write the specific but aim for
broad applicability.
Our actions matter. We may never recognize the full impact we have.
Everything we do can have a profound effect on others. Remember that
when you think you’ve lost the argument, that you’ve failed, that nobody
 6 Losing 85

understood. Most of the effects of our actions are unseen but impor-
tant. Without Cal’s single email, there’d have been no “Past, Present, and
Future,” “Getting the Truth Out,” or “In My Language” [2].
I owe debts to different disability movements: Developmental disability
(DD) self-advocacy, Deaf culture, psych survivors, the independent living
movement, others. They have shaped everything I’ve ever done in the
autistic community, far more than the autistic community itself has.
Like everyone I know who’s been called a leader within the autistic
community, I took in many perspectives from outside the community, and
functioned within a broader sphere than one community. We’re part of
the disability rights movement. Other disability communities influenced
everything I’m known for within the autistic community. Some things
people say as “about autism,” were not only never “about autism,” but came
out of things like the DD self-advocacy movement. “In My Language”
was an act of DD solidarity with a girl with cerebral palsy whose parents
mutilated her, not a statement about autism. I told CNN this. They edited
it out, replaced with something I never said [3].
Whatever perspective we come from, we need to be prepared to think
we’ve failed, to never know our full impact. Cal may’ve lost an argument in
1995, but he showed me a way of seeing myself and other disabled people
that proved central in nearly everything I ever did that had an impact. I’m
sure even my least pleasant contributions have had important effects I’ll
never know about.
Sometimes we think we’ve lost, but it’s only the beginning of things we
can’t imagine. We have to do the right thing even when it looks like we’re
failing. One email can spark important things we’ll never see from people
we’ve never met.

References
1. Baggs, M. (2006, August 7). Want more contributors to getting the truth out
(Web log post). Retrieved from https://ballastexistenz.wordpress.com/2006/
08/07/want-more-contributors-to-getting-the-truth-out/.
86 M. Baggs

2. Baggs, M. (silentmiaow). (2007, January 14). In my language (Video file).

Retrieved from https://www.youtube.com/watch?v=JnylM1hI2jc&t=31s.
3. Gajilan, A. C. (2007, February 22). Living with autism in a world made for
others. CNN. Retrieved from https://edition.cnn.com/.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
Part II
Getting Heard
 7
Neurodiversity.Com: A Decade
of Advocacy
Kathleen Seidel

Introduction
I was unschooled in autism before 1999. When Oliver Sacks’s article,
“An Anthropologist on Mars,” appeared in The New Yorker in 1993 [1],
my husband, Dave, and I had thought of our youngest child—a preco-
cious, eccentric, artistic, excitable puzzle-lover with a penchant for soli-
tude. “Sounds familiar!” we said to each other, but saw no reason for
special concern.
I read nothing more about autism until 1999, after our first meeting
with his fourth-grade teacher.1 Her classroom observations led us back to
the Sacks article, which resonated anew. A psychologist encouraged us to
obtain an evaluation, and after several months of testing, in mid-2000 our
child was diagnosed with Asperger syndrome.

1 Since
mid-2006, I have consistently used masculine pronouns to refer to the person identified in
many of my earlier advocacy letters as my youngest daughter.

K. Seidel (B)
Peterborough, NH, USA

© The Author(s) 2020 89

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_7
90 K. Seidel

I set about learning everything I could about autism in order to best

understand his needs and articulate those needs to his teachers. I read works
by Lorna Wing [2], Uta Frith [3], Tony Attwood [4], and Simon Baron-
Cohen [5]. I attended AANE (Asperger/Autism Network) seminars. I
participated in discussions on the St. John’s Autism List [6]. I trawled the
internet for information and created a database to store my bookmarks
and notes. I am a librarian by training, and had already developed several
websites; an autism portal seemed like a potentially useful and rewarding
creative project.
That took a few years to happen. After losing my job in the Dot-Com
Bust of 2000, I started a used bookselling business, and underwent a
profound shift in my understanding of autism.

Engaging Neurodiversity
I first encountered “neurodiversity” in an article in The Atlantic describing
online spaces created by autistic adults [7]. I loved the compassionate,
inclusive flavor of the word, and its broad call for respect for people like
my child. I tucked it into my memory, whence it emerged one evening in
January 2001, as Dave and I were brainstorming ideas for domain names.
As it turned out, “neurodiversity” was available, so we registered it on the
spot.
Although bookselling temporarily derailed my autism website plans, I
continued to read and squirrel away URLs, increasingly gravitating to work
by autistic authors. I delved into essays by Jim Sinclair [8], Frank Klein [9],
Larry Arnold [10], and Joelle (then Joel) Smith [11]. I discovered the writ-
ings of Michelle Dawson, who opposed efforts in Canada to mandate one
form of behavioral training as “medically necessary” for autistic children
[12]. Laura Tisoncik’s and Mel (then Amanda) Baggs’s “Institute for the
Study of the Neurologically Typical” [13] (see Tisoncik, Chapter 5) made
a strong impression, and both eventually became friends. Janet Norman-
Bain’s “Oops …Wrong Planet! Syndrome” website led to hours of explo-
ration [14]. I gave Gunilla Gerland’s Finding Out about Asperger Syndrome
[15] to my child to help him understand his diagnosis. Every reading
sparked new shocks of recognition.
 7 Neurodiversity.Com: A Decade of Advocacy 91

I began to notice autistic traits in every interaction I had with my

father, and my mother—a music and special education teacher–increas-
ingly shared that recognition. A chemical engineer born in 1933, Dad con-
tracted polio at the age of ten, and used crutches, braces, and a wheelchair
thereafter. In our household, “disability” and mobility accommodations
were ordinary, as was a certain interpersonal je ne sais quoi. Dad was an
analytical thinker with minimal tolerance for his own frustration or others’
emotionality; he was practical, brusque, and disinclined to social niceties.
(One especially memorable phone call began in mid-sentence, as if I were
mid-conversation with him a continent away.) I gradually recognized that
I, too, lay somewhere along the banks of the “broader autistic pheno-
type”: intense focus; bluntness; anxiety and occasional sensory overload;
fondness for collecting, organizing, and diving deeply into subjects that
interest me. Why had nearly a decade passed before Dave and I figured
out that our youngest child was on the spectrum? Perhaps because he was
not so different from his grandfather, or from me.

Neurodiversity.Com
The appearance of “neurodiversity” in the New York Times [16] signaled
that the time had come to transform my database into a website. In May
2004, after a week of nonstop HTML writing, Neurodiversity.com was
born. Over 100 different pages included “Positive Perspectives on Autism,”
“Girls & Women on the Spectrum,” “The Question of Cure,” and “Neu-
rotypical Issues”; the site also featured a game, “Unmasking the Face” [17],
based on Paul Ekman’s book on nonverbal communication [18]. Later, I
added a collection of papers on the history of autism research, including
early works by Kanner, Asperger, and Lovaas [19].
From my original mission statement:

My goal is to increase goodwill and compassion in the world, and to help

reduce suffering. I seek to help reduce the suffering of autistic children
and adults, who often face extraordinary challenges in many domains of
life, challenges made more difficult by others’ unrealistic expectations and
demands, negative judgments, harassment and marginalization. I seek to
92 K. Seidel

help reduce the suffering of family and community members who are bewil-
dered and distressed by actions of and interactions with autistic people, and
who are concerned for their own and others’ safety and well-being. I seek
to help increase the capability of educators and service providers to pro-
vide effective, respectful support for those on the autistic spectrum. My
means of achieving that goal is to share some of the information that has
helped us to move from a place of grief and stress to a place of recognition,
understanding, and positive regard. [20]

Engaging Advocacy
Shortly after Neurodiversity.com launched, I noticed a visit from the
Yahoo group AutAdvo; soon I was avidly participating in discussions with
autistic men and women whose writings I had previously encountered. I
enjoyed exchanges with Camille Clark, co-creator of the Autistic Adults
Picture Project [21], who blogged from 2005 to 2007 as “Autism Diva”
[22]; Jane Meyerding, author of “Thoughts on Finding Myself Differently
Brained” [23]; Phil Schwarz, father of an autistic son and vice-president of
AANE [24]; Kassianne Sibley (now Kassiane Asasumasu); Patricia Clark
(d. 2005 [25]); Alyric (d. 2009 [26]); and many other members.
Through AutAdvo, I befriended Gayle Kirkpatrick, whose autistic son
had been banned from their town’s only playground, and traveled to Maine
in August 2004 to attend hearings in the family’s suit against the school
district. Shortly before trial, I summarized many themes that would inform
my subsequent advocacy work in “The Autistic Distinction”:

… Those who value compassion must work to change the content and
tenor of public discussion about cognitive difference. … We must consider
the negative impact on autistic citizens of the popular practice of refer-
ring to autism as an “epidemic,” a “tragedy,” a “plague,” a “devastating
scourge,” a “catastrophe,” or a “demon;” of the use of military metaphors
such as “killing,” “attacking” or “defeating” autism, and description of autis-
tic children as “prisoners of war;” of comparison of autism with degenerative
diseases such as cancer and diabetes; of the use of verbs such as “fester” to
describe the autistic pattern of human development.
 7 Neurodiversity.Com: A Decade of Advocacy 93

… Many parents experience the unveiling of autism as a grievous revela-

tion. However, I am convinced that the negative impact on families and
on autistic persons is increased and perpetuated by crisis-oriented descrip-
tions of autism that focus on abnormality and deficit, that automatically
characterize early education as a heroic “intervention” if the children being
educated are autistic, that raise the specter of institutionalization simply
because that is the way society has tended to address cognitive difference
in the past, and that describe autism as something that must be destroyed.

Assertions that autism can and must be “cured” create unrealistic expecta-
tions, promote the exploitation of parents made desperate by dire predic-
tions, and perpetuate a climate of negative judgment towards children and
adults who are not or do not strive to become “indistinguishable from their
peers,” those who look and behave like the autistic people that they are.

… I seek a reconceptualization of cognitive difference, to the end that those

who bear now-stigmatizing labels of “deviance,” “disorder” and “syndrome,”
may live and manifest their individuality, distinctive interests, gifts and
capacities with integrity, in a manner that comes naturally to them, free of
pressure to become people they are not, free of the automatic assignation of
inferior status; and that they may enjoy the respect of their fellow citizens,
rather than disdain and exclusion.

Retrospective consideration of the lives of exceptional human beings offers

credible evidence that the autistic distinction has persisted throughout his-
tory, and has been a valuable element of human culture. Genetic research
indicates that at least twenty different genes can signal a predisposition to
autistic development; autism is pervasively embedded in the deep structure
of humanity. Psychological research indicates that autistic characteristics
constitute an identifiable pattern of traits that are present in varying degrees
throughout our entire species.

Autism is as much a part of humanity as is the capacity to dream [27].

Through AutAdvo, I also befriended University of Wisconsin-Madison

psychology professor and fellow autism mom Morton Ann Gernsbacher.
When news broke that University of Kentucky chemist Boyd Haley had
dubbed autism “mad child disease,” we created a “Petition to Defend the
94 K. Seidel

Dignity of Autistic Citizens” that garnered hundreds of signatures after

it was published on Neurodiversity.com [28]. I soon learned that Haley
was a hero to many convinced that autism was vaccine-induced, and a
proposed expert witness in legal proceedings consolidating thousands of
claims filed by parents of autistic children. The experience strengthened
my concern about the proliferation of anti-vaccinationist sentiment, liti-
giousness, and chronic outrage among parents of autistic children; the use
of sensationalistic language to describe autism and autistic people; and
the hostility toward autistic adults expressed by many proponents of an
“autism epidemic.”
I wrote to the Congressional Autism Caucus [29], and many more
letters to editors, and documented all of the correspondence on the site.
These were noticed; Neurodiversity.com was mentioned in the December
2004 New York Times piece, “How About Not Curing Us, Some Autistics
Are Pleading” [30]. Later, I had encouraging exchanges with the head of
the National Institute of Mental Health, who had stated that autism “robs
a family of [a child’s] personhood” [31], and the head of the University
of California, Davis MIND Institute, whose fundraisers had broadcast
insupportable claims of an “autism epidemic” [32].
After Rolling Stone published “Deadly Immunity,” alleging a cover-up
of evidence linking autism with vaccines, I wrote to its author, Robert F.
Kennedy Jr., noting that not all parents regarded their children’s autism as
a consequence of wrongdoing [33]. As the publicity campaign escalated
for David Kirby’s book Evidence of Harm (EoH) [34], I wrote to question
Kirby about the purpose of the discussion list created in connection with
it, documenting many instances in which autistic children were dispar-
aged and dissenting parents vilified [35]. I also corresponded with Lenny
Schafer—proprietor of the EoH list and publisher of the Schafer Autism
Report, where autistic advocates were denounced as “imposters who triv-
ialize the catastrophic nature of real autism” [36, 37]. I did not expect
that my letters to Kennedy, Kirby, and Schafer would provoke attitudinal
change in their recipients, but persevered and published in the hope that
visitors to Neurodiversity.com might reconsider their assumptions about
autism, recognize the toxic nature of the crusade to equate autism with
contamination, and increase their respect for autistic citizens of all ages.
 7 Neurodiversity.Com: A Decade of Advocacy 95

Neurodiversity Weblog
In the summer of 2005, I established Neurodiversity Weblog to streamline
publication and facilitate discussion of letters and articles on the site. Dur-
ing the blog’s first year [38–42], I published writing by Darold Treffert,
Rita Jordan, Michelle Dawson, Phil Schwarz, and James Laidler. I decon-
structed a Chronicle of Higher Education article condoning discrimination
against autistic candidates for academic employment [43, 44]. I protested
the Autism Society of America’s pathos-inducing “Getting the Word Out
about Autism” campaign [45], the use of vaccine-causation evangelists as
consultants by Autism Speaks [46], and their doom-laden film Autism
Every Day [47]. The blog attracted both sympathetic and critical readers,
and featured many lively and occasionally contentious exchanges.
A February 2006 article in the Concord Monitor [48] spurred me to
investigate a new regimen involving administration of hormonal suppres-
sants such as Lupron to autistic children [49]. I learned that applications to
patent the “Lupron protocol” remained undisclosed in the presentations
of its developers, Mark and David Geier [50]; that the latter’s academic
affiliation was misrepresented in a peer-reviewed study [51]; that they
headed the IRB overseeing their own research [52]; that they were diag-
nosing autistic children with precocious puberty who did not meet formal
criteria [53]; and that the “protocol” called for excessive blood draws and
expensive tests [54]. After publishing a series of articles on the subject [55],
I sent the editorial board of Autoimmunity Reviews a lengthy critique of
a report they had published of the Geiers’s research [56]. This led to the
paper’s retraction, an incident later discussed in the British Medical Journal
[57] and Slate [58].
During this period, I wrote to the Interagency Autism Coordinating
Committee, calling out their lack of autistic members and their references
to autism as a disease, and contrasting the scant attention they paid to
quality of life issues with their frequent appeals for brain tissue, which
gave the impression that autistic adults were more highly valued when
dead than alive [47]. I also exchanged correspondence with the United
Methodist Church protesting their support of Sykes v. Bayer , litigation
initiated by a Methodist minister against corporations she held at fault for
causing her son’s autism [59].
96 K. Seidel

In the fall of 2007, a paralegal studies course inspired me to write a

series of articles on cases alleging environmental causation of autism. Vac-
cine Court Chronicles attracted heat [60]. On March 24, 2008, I published
a post discussing economic incentives that biased vaccine-injury attorneys’
pronouncements on disability causation, and tallied fees paid by the court
to Geier associate Clifford Shoemaker [61]. Barely four hours later, Shoe-
maker issued a subpoena for me to be deposed in Sykes v. Bayer, demanding
my financial records, tax returns, information about my religious beliefs,
and all correspondence about any subject discussed on Neurodiversity.com
[62].
After I blogged my motion to invalidate the subpoena, all hell broke
loose. Slashdot covered the case three times, nearly crashing the server with
each flood of hits [63–65]. Opinionistas across the blogosphere offered
their support. Attorney Paul Levy of Public Citizen submitted a brief rec-
ommending that Shoemaker be sanctioned [66]. Harvard’s Digital Media
Law Project featured the case on their site [67]. I was profiled by the
Concord Monitor [68], and in Andrew Solomon’s New York article, “The
Autism Rights Movement” [69], Dr. Paul Offit devoted a chapter to my
work in Autism’s False Prophets, and included me in its dedication [70].
After my motion was granted [71], Sykes v. Bayer was dismissed with
prejudice [72], and the court ultimately sanctioned Mr. Shoemaker [73].
Over the next few years, I continued to report on ongoing autism-
vaccine litigation, post announcements of research participation opportu-
nities, and investigate dodgy autism treatments and consumer scams. Sub-
jects included OSR, an industrial chelator developed by Boyd Haley and
promoted for consumption by autistic children [74], and electromagnetic
radiation shielding devices touted as autism treatments by debt-ridden
multilevel marketers and new-age entrepreneurs [75]. A misleading tele-
phone solicitation provoked me to dig into the public filings of the Autism
Spectrum Disorder Foundation, which claimed to help autistic people, but
showed little evidence of useful activity [76]. My local paper published
an op-ed in which I advised readers to be skeptical of unfounded claims
about autism [77].
In 2010, my investigations of the “Lupron protocol” and OSR inspired
(and were cited in) the Chicago Tribune’s award-winning series on
unproven autism treatments [78, 79]. Shortly thereafter, the FDA ordered
 7 Neurodiversity.Com: A Decade of Advocacy 97

OSR taken off the market [80].2 In the spring of 2011, following a Mary-
land citizen’s complaint incorporating my articles on the “Lupron pro-
tocol,” the state’s Board of Physicians suspended Mark Geier’s license
to practice medicine and charged David Geier with practicing medicine
unlawfully [82]. By 2013, Dr. Geier’s license had been revoked in all
twelve states that had granted it [83]. As the first person to raise the alarm
about the Geier’s pharmaceutical experimentation on autistic children,
and about Haley’s efforts to bypass federal drug approval regulations, I
take pride in these outcomes.

Engaging Community
Neurodiversity.com was, for the most part, a one-woman operation; the
occasional conference enabled me to connect with others who shared my
interests and perspective. I was grateful to AANE for offering support
to children like my son and parents like me. I learned much from Aut-
Com’s workshops on assistive communication and from accounts of its
members. At Autreat 2008, I met Rosalind Picard of the MIT Media
Lab [84], which I later visited with Mel Baggs and Estée Klar, founder
of The Autism Acceptance Project [85]. I attended AutCom 2007 and
Autreat 2009 as Mel’s support person, traveling with them and assisting
at their presentations.
As the amount of information and misinformation about autism pro-
liferated online, updating Neurodiversity.com’s static link pages grew
increasingly laborious, and ended in 2008. The flow of blog posts lessened
thanks to newfound employment; my son’s labor-intensive adolescence
and gender reassignment; my parents’ passing; and advocacy burnout
exacerbated by often-hostile attention attracted by my writing, and by
the escalation of conflict between autism advocates.
In late 2005, Kevin Leitch, proprietor of the blog Left Brain/Right Brain
[86] had established Autism Hub, a feed aggregator “guided by the princi-
ples of ethics, empowerment, advocacy, autism acceptance, positivity, and
realism” [86]. The Hub eventually included a few dozen sites and served

2 Since the FDA’s 2010 order, OSR appears to have made a comeback [81].
98 K. Seidel

as a useful portal to positive autism advocacy. In 2007, Kev needed to cut

back on his obligations, so Dave assumed responsibility for Hub mainte-
nance. A mailing list for status updates soon morphed into a discussion
forum. Over the next few years much constructive conversation ensued;
increasingly, so did “horizontally hostile” exchanges. Some list members
questioned the legitimacy of others’ diagnoses. Several protested the con-
tinued inclusion of a blogger publishing misogynistic posts; their protest
provoked misogynistic responses. Some members asked to refrain from
verbal abuse griped about supposed intolerance of their “autistic commu-
nication style.” Resentment was expressed that a neurotypical parent was
maintaining the Hub and moderating the list. Ari Ne’eman repeatedly
challenged Michelle Dawson regarding Autism Speaks’s funding of Lau-
rent Mottron’s research on autistic cognition, in which she was involved
[87]. I was dismayed by the emergence of this last conflict, given my
respect for Dawson’s work, although I agreed that Autism Speaks should
retool its goals and rhetoric.
I felt that needless discord, demagoguery, and polarization could only
exacerbate tensions and undermine advocacy efforts, but I had too much
on my plate to jump into new debates. Dave and I were both increas-
ingly burdened by these conflicts, as well as by a member’s depressive
crisis. Stressors beyond the list included efforts to discredit Mel Baggs,
whose video “In My Language” [88] had attracted overwhelming media
attention. In May 2010, after one too many bouts of agita, Dave took
the site offline, leaving it to others to proceed without his involvement.
Many were unhappy about the abrupt shutdown, but sometimes one’s
own sanity must come first, and we do not regret our decision.
I continued to blog as I have described above, and attended one more
conference. I published my last post in March 2012 [89]; one year later, a
botched server migration vaporized Neurodiversity Weblog. Fortunately,
the posts can still be accessed via the Internet Archive (http://www.archive.
org). Although most of Neurodiversity.com’s external links are defunct, I
continue to host the site as a document of autism advocacy, the debate
over autism and vaccines, and the evolving idea of “neurodiversity.”
 7 Neurodiversity.Com: A Decade of Advocacy 99

Although I own the web domain, I am reluctant to define “neuro-

diversity,” preferring to express in writing the values I associate with it.
The thoughtless deployment of stigmatizing characterizations of autism;
the misleading marketing of unproven “autism treatments” to parents of
autistic children; the litigation and culture of blame into which so many
families were drawn—all presented morally and intellectually compelling
matters for consideration, inspired by my conviction that cognitively vari-
ant persons of all ages should be afforded respect, appropriate assistance,
and freedom from abuse, exploitation, and undue pathologization of their
traits and challenges.

Conclusion
My path to advocacy began with the need to understand my child, and
to marshal understanding within the school and community. I found the
greatest insight for this work in writings of and interactions with autistic
adults and their allies, both in person and online. With Neurodiversity.com
and Neurodiversity Weblog, I sought first to share useful information, then
to communicate my evolving concerns and encourage consideration of the
concerns of autistic people themselves. I did not seek to join a movement,
but ended up participating in one. As I put it in a 2006 letter to the New
York Times Book Review:

The neurodiversity movement does not consist of faddish cultists trolling

for converts, but of disabled individuals, their family members, and [other]
allies constructively responding to prejudice, stigma and pejorative labeling.
People don’t all think the same way, and appreciation of this reality is
not limited to those who possess a diagnosis. I am one parent who wants
her “neurodiverse” family members to flourish — happily, healthily, well-
educated and respected in a society that embraces the value of cognitive
variety. [90]
100 K. Seidel

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 8
Autscape
Karen Leneh Buckle

In the Beginning, There Was a List

I am currently the event manager for Autscape, an annual three-day
residential event for autistic people. It is autistic-led, though not exclusive.
I was there the day Autscape was conceived, and I have had a major role
in organizing the event for 12 of its 14 years. Here’s how it happened.
Soon after I first discovered the Internet in late 1996, I sought out
autism-related groups and immediately went to spending hours every day
on autism chat rooms on Internet Relay Chat (IRC) and email-based
support groups (“lists”) such as Independent Living on the Autistic Spec-
trum (InLv; Martijn Dekker [1], see Chapter 2) and Autism [2]. Through
these activities, I heard about Autreat and joined ANI-L, the list run by
the organization responsible for Autreat, Autism Network International
(ANI, www.autismnetworkinternational.org). In those days, it was com-
mon to use an online “handle” or nickname rather than one’s real name,

K. L. Buckle (B)
Chesire, UK
e-mail: kalen@worldapart.org

© The Author(s) 2020 109

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_8
110 K. L. Buckle

and mine was ‘Kalen.’ Then in its second year, Autreat was an annual
conference organized by and for autistics and their “allies.” I would have
liked to go. At that time I had only met two people I knew were autistic,
and I wanted to see if others were similar. I also wanted to see for myself
what people were talking about so much on ANI-L. Unfortunately, as I
lived in western Canada, and had very little money, the trip to the eastern
United States was too daunting and expensive. When I emigrated to the
UK, any hope of making it to Autreat all but disappeared.
One of the email groups I belonged to in those days was Independent
Living on the Autistic Spectrum (InLv), run by Martijn Dekker. On InLv,
we occasionally talked about Autreat, as some members had attended while
others wished to, and we longed for someone to organize such an event in
Europe. Eventually, in July 2004, tired of all the talk and no action, one
member asked who would start a list (email group) to get started organizing
such an event. I had some relevant experience running email lists for
autistic parents, partners, and adults, so I volunteered. Considering myself
radically disorganized, my intention was only to manage the technical side
of the communication while others got on with the organizing.
Initially, the list had around 20 subscribers from all over the world, and
it took some time to settle into a focused group of organizers. I was both
flattered and astonished when a Finnish member, Heta Pukki, suggested
that I should be chair. No one else came forward, so eventually I agreed.
As a somewhat strange side effect of all of this coming from the online
community is that my online name became my name within Autscape,
so there I am still known mostly as “Kalen” except to my family and
friends. Charles Burns was our first Treasurer, and Heta served as the first
secretary. Various other people also helped with website, printing, and
sharing thoughts and ideas, but I have such a poor memory for people I
don’t know who all of them were now. Jim Sinclair, the founder and main
organizer of Autreat, served as an advisor to the committee. We chose a
name and I created a website. We devised a list of features we needed in a
venue, and Charles and his wife, Kazumi, found one that seemed viable,
Ammerdown Centre in Somerset, England. They negotiated a discount,
got us penciled in for 3 days in the summer of 2005, and put forward the
initial deposit. Kazumi served as our first venue coordinator, managing
liaison with the venue. However, interest waned and progress slowed, and
 8 Autscape 111

we started to consider having a smaller event just for the organizers to learn
about organizing events, with a view to doing a full-fledged conference
the following year.
A pivotal moment came when early in 2005 Heta announced that she
had secured a grant of £5000 to pay organizers’ expenses and childcare,
as several of us had children, and to bring over the leader from Autreat,
Jim Sinclair, to assist and train us. Inspired by this change, we suddenly
went into full swing organizing the actual event. I managed most of the
general coordination, registration, program, and writing. I sent out a call
for proposals for the program by email and made an advertising brochure.
I also developed a rudimentary online booking form that would allow
participants to send us essential information by email. Remarkably, people
registered! Charles managed payments and banking. We didn’t yet have a
proper database for managing participant details, so I kept them all in a
spreadsheet on my computer.

Autistic Space
Planning an event around autistic needs is complex due to their diver-
sity. Because the event included room and board, Kazumi liaised with
the venue staff at Ammerdown to obtain extensive details of bedrooms,
bedding, meeting rooms, lighting, and menus. Although we had catering
for special diets, we had a small number who couldn’t cope with central-
ized catering, so we also had to arrange self-catering for them. We had to
train venue staff in understanding autistic needs. We visited and took pic-
tures of meeting rooms, social space, and bedrooms. To help those with
sensory hypersensitivities, we banned scented products, camera flashes,
and any touch without explicit consent. We scoured the venue for flick-
ery fluorescent lights, squeaky doors, air fresheners, and noisy fans, and,
wherever possible, had these switched off, fixed, or removed. We also
advised participants to use sunglasses, earplugs, or other devices to suit
them. Ammerdown had a lounge area with a bar where we could socialize
in the evening. It had a similar feeling to a small pub, but without the
background music because dealing with a room full of people talking is
hard enough without music as well.
112 K. L. Buckle

We adopted and adapted Autreat’s interaction badge system, large

colored badges optionally worn by participants to help regulate social
approaches. They were:

Red: Please do not approach me. I do not wish to socialize with anyone.
Yellow: Please do not approach unless I have already told you that you may
approach me while I am wearing a yellow badge.
Green: I would like to socialize, but I have difficulty initiating. Please feel
free to approach me [3].

On each of the badges was written the name of the color, to help those
with color blindness, and its use, in case participants forgot what it was
for.
We decided from the start that the event should be three days long so
participants would have a chance to settle in and still have some time left
to enjoy being there. Coffee and meal breaks were extra long for similar
reasons. Because many autistic people appreciate structure, there was a
full program of scheduled activities such as presentations and discussions.
The program also included a leisure time after lunch when a variety of
activities were on offer, such as music, dance, and meditation, and we
had an exercise session early in the morning for those who wanted to join
in. We knew that many of our participants would not drive and public
transport to the venue was poor, so we arranged transport by bus from the
nearest train station, 13 miles away. Because autistic people have a wide
variety of gender identities and expressions, we now gender neutralize
toilets in public areas when there isn’t already a gender-free one, but we
didn’t know to do that at the time.
One thing that makes a space autistic is that autistic people are ordinary,
not special. Autscape is a prime target for researchers and journalists, and
while some autistic people are eager to take part, others wish to be left to
be themselves in peace. We have had some journalists, filmmakers, and
researchers on site, but we give them strict guidelines disallowing filming
in public places and to only use material from people who proactively
offer to contribute.
Having put time and effort into organizing all this for the first event, we
then hit a snag. The venue decided we would have to provide one carer for
 8 Autscape 113

every three autistic people. Most of our potential participants were inde-
pendent adults who didn’t have or need someone to care for them. From
this came one of our first principles: participants are presumed competent.
If they need help to manage in Autscape’s environment, it is up to them to
bring someone, although as it turns out, people who usually need a carer
when away from home sometimes don’t need one at Autscape. Thankfully,
an emergency meeting with venue staff was sufficient to convince them
that we didn’t need to dictate a specific carer-to-participant ratio. Autreat
organizers had warned us that some difficult behavior from participants
was likely and Jim provided some training just before the event.
Possibly the most helpful adaptation for autistic people is the provision
of information. Before Autscape, we sent out a comprehensive yet concise
information pack with details of the venue and program, expectations,
packing list, and transport details. We were, as always, late producing
it, only 3 weeks before the event, but one participant has said that after
some considerable anxiety, it was the information pack with its detailed
information that told her she was coming to a place where she would be
understood.
Most of the bedrooms had two single beds, but demand was so high we
needed maximum occupancy, so we arranged to match up roommates and
assign rooms ourselves based on sensory and social preferences. We filled
all of our designated bed spaces in the venue, which was shared that year,
for a total of around 45 people. The first event was a stunning success.
Participants seemed happy, organizers were coping, the program ran well.
There was no sign of the difficult behavior we’d been told to expect. We
had a meeting at the end to consider whether Autscape had a future (and
who would run it if it did) and the response was overwhelmingly positive.
Autscape continued in much the same way for the next two events,
but with sole use of the venue so we could fit in about 85 people if we
used every space. In two of the years, we even had people camping in the
grounds in order to come. By 2008 we had outgrown Ammerdown, and
it had become too expensive as they no longer gave us the discount for
new groups. We searched through hundreds of retreat centers from web
searches and recommendations, but all were unsuitable. We eventually
settled on Giggleswick School in North Yorkshire, England. As we were
told to expect based on Autreat’s experience, numbers dropped by about
114 K. L. Buckle

a quarter when we changed venues. Giggleswick is on a steep hill and

bedrooms and facilities are scattered among several buildings. We didn’t
know how to get a coherent sense of community in a dispersed venue, so to
many who had been to Autscape before, it felt more distant and detached.
In 2009, we returned to the retreat center format at Emmaus Centre near
London, and then back to Ammerdown for the last time in 2010. After the
moves, numbers increased back to Ammerdown’s full capacity. Since then,
we have become better at choosing venues and managing their different
strengths and weaknesses, so different needs are met each year and we are
better able to provide social opportunities even in dispersed venues.

Autistic Participants
Inclusivity is a central principle of Autscape. In order to be inclusive,
Autscape has to be accessible. The main criticisms Autscape has received
over the years have been from two views of accessibility. One is that it
is insufficiently accessible to people with mobility impairments, and the
other is that it is too expensive for autistic people, who very often have
a low income. Unfortunately, we have not yet been able to solve both
of these at once. Venues with full wheelchair access, adapted bedrooms,
en-suite bathrooms, etc., are expensive. Fees would have to be consider-
ably increased to cover such venues. Autscape has to pay the same fee to
the venue whether the person is a participant or a personal assistant, so
allowing assistants to attend for free would also substantially increase fees.
Inexpensive venues are usually boarding schools that are hundreds of years
old. They tend to be more difficult to access, work with, and navigate.
They have a less polished appearance and provide fewer luxuries, so par-
ticipants have to bring their own towels and use communal kitchenettes
for making coffee and tea. Rather than being compact like most confer-
ence centers, schools are often on sprawling sites with long walks between
activities, dining areas, and houses of residence. Within the houses, they
have many stairs, convoluted corridors, awkward height beds, and few or
no en-suite bathrooms. Although the external door to each house is locked
with a separate code, the bedroom doors usually don’t lock. However, these
venues usually have great outdoor space, lots of separate rooms to meet
 8 Autscape 115

in, and far more single bedrooms, which many of our participants need.
Our best solutions to these problems for now are to keep our program
and advertising costs to a minimum and to rotate between venues with
different features to prioritize different needs in consecutive years.
Even in the cheaper venues, the total cost for Autscape is still high, but
such a high proportion of our participants have a low income that lowering
the fees for them would put an unfair burden on the few who don’t. Until
2017, we offered a very small low-income discount. The discount had to be
small in order to cover a large number of people. We never required proof
of income to avoid disadvantaging those who struggle with organization
and paperwork. This discount was not helpful to those who had the least
and struggled to afford to come even at the lower rate. In 2018 we tried
a new approach. We stopped having that low-income rate and instead
have a grant scheme which is more flexible and allows us to give larger
discounts to a few people rather than a very small discount to many. It
is more expensive, but as a more mature organization, our finances are in
better condition than they were in the early days.
Some of the issues with access could be solved by diligent fundraising
in order to lower all the fees or provide more substantial subsidies for
people who can’t afford to come. Unfortunately, people with the ability
to fundraise effectively appear to be rather rare in our community. We
had three large grants in the early years. The first, as described earlier,
funded organizers and childcare at the first event. After the second grant
we had the misfortune of being randomly selected for an audit of the
spending. The stress of the audit was enough to put us off seeking further
grants. Funding for ongoing running costs of an organization is virtually
impossible to find, but we did apply for one more grant in 2008 to support
Autscape’s development as an organization. Since then, Autscape has been
entirely self-sustaining, with no external funding other than the occasional
personal donation. Fees are set at a level that can sustain operation, and
prudent management of the finances has allowed Autscape to remain well
above the minimum necessary to operate since the first event.
Another aspect of being as widely inclusive as possible is Autscape’s
decision to be explicitly non-political. That includes party politics—which
is not allowed under UK charity regulations in any case—and “autism
politics” such as lobbying for changes to law or policy. The sole exception
116 K. L. Buckle

is that Autscape supports the view that autistic people have a right to exist.
Autscape was set up exclusively to run the annual Autscape event. If we
become distracted from that, we risk failing at our core purpose. We also
risk losing some of our inclusivity. If we adopt a political position, then
we alienate those who disagree with it. Autscape has provided a platform
for more politically oriented activities to take place. Participants have run
discussion groups about the Labour Party’s Neurodiversity Manifesto and
about autistic activism. Out of one of the latter, the London Autistic Rights
Movement was started, which later evolved to be Autistic UK, an active
autistic rights organization. One former member, who was involved in
another organization for a while, has suggested that Autscape’s focus and
determination to do one thing and do it well, not to be distracted by other
activities like politics and advocacy, is part of why Autscape has lasted so
long.
Autscape has had minimal success in attracting autistic people with a
wider range of ability. To some extent, this is due to inherent characteris-
tics of people who are, for example, less verbal or less sociable. However,
we have tried to include some activities that are more accessible to people
who don’t handle words as well as most of us, with mixed success. In 2013
I did a presentation on using Makaton, simplified sign language, to com-
municate urgent needs. We also try to include some sessions that are more
experiential, such as meditation, art, music, and movement workshops.
To do a really good job of having a program suitable for a wider range of
autistic people, we would have to have a dedicated leader and team who
focused on only that, but so far all our organizers have been quite busy
just continuing to have an event each year.
Being inclusive does not mean making everyone happy. It is common
for autistic people to believe that in a hypothetical autistic-only space
(which Autscape isn’t, but many people have talked about creating) every-
one would be exceptionally sensitive and respectful of their needs. In our
experience at Autscape, many autistic needs are mutually incompatible,
even paradoxical. Some of us are loud, but easily overloaded by noise.
 8 Autscape 117

Some are lonely, but only want interaction on our own terms. Some can’t
stay still and quiet in presentations, but are intolerably distracted by others
fidgeting or interrupting. It isn’t possible to satisfy all of these at once.
In wider society, many autistic people are assumed, by virtue of their
diagnosis, to be at risk of antisocial behavior. Social groups set up by
neurotypicals (NTs) for autistic people sometimes require all their autistic
members to sign a behavior contract before they are allowed to attend.
Such contracts are seldom seen outside of activities for children, teenagers,
and disabled people, and it is demeaning. Autscape decided early on that
we would not have any kind of general behavior contract. Guidelines
are framed in terms of challenges that we can work together to manage.
Outright rules are kept to a minimum, mainly around venue house rules
and limiting sensory distress to others. We don’t require anyone to wear
an identification badge, speak in a certain way, or refrain from acting
odd or “creepy.” We don’t tolerate harassment, but when an issue arises,
we are more likely to work on ways for both parties to understand each
other and to avoid a repeat incident rather than coming down hard on
the perceived transgressor. Although we try to limit the negative impact
of others’ behavior, autistic space is an exercise in tolerance.
Autscape has never excluded non-autistic people. Exclusivity supports
the idea that such segregation is needed, that is, that the presence of people
from outside our group would be somehow harmful, not “safe.” Having
inclusion criteria, for example, “autistics only” creates suspicion about
whether those in the group are really “us” or may be “them,” whether
deliberately (infiltrators) or by mistake (falsely identifying as autistic).
Exclusivity also lends itself to the spread of prejudice and misinformation
about the excluded group, as statements about them can go unchecked,
and allows those in the group to foster ideas about their superiority to the
excluded one. It is inconsistent to respond to exclusion from mainstream
society by practicing it. Some argue that exclusion is justified when the
selected group is a disadvantaged minority, but we believe that for all the
same reasons that neurodiversity is beneficial to society, it is beneficial to
our group.
118 K. L. Buckle

Herding Cats (Autistic Organizers)

Events for autistic people that are organized by NTs can be autistic-friendly,
but they will never be truly autistic space. For better or worse, a great major-
ity of Autscape organizers are autistic. One of the pleasures of working
with an autistic team is that we have some communication compatibilities,
such as focusing on content rather than the feelings behind it, and being
swayed by a well-supported argument. Many Autscape participants don’t
think they are capable of being organizers, but many organizers didn’t
either. We have minimum standards of communication and decision-
making abilities in order to be able to operate at all, but difficulties, even
quite severe ones, are tolerated and accommodated as much as possible,
and mistakes, even big ones, tend to be forgiven and eventually forgotten.
Some who thought we couldn’t work with anyone have done quite well in
Autscape. For some of us, it is the only significant contribution we have
been able to make to society.
As chair of Autscape, when it wasn’t going well, I felt like a cat herder.
Autistic organizers have a tendency to get bogged down in details, or go
off on a preferred focus, neglecting the priority task at hand. Executive
functioning difficulties are very common, and a few of us have severe ini-
tiation impairments as well, so we take on tasks and then aren’t able to
complete them on time (or at all). It is also distressingly common for com-
mittee members to fall completely silent when we are struggling. When it
was going well, rather than a cat herder, I felt like an orchestra conductor,
bringing out the unique features and capabilities of each member. One
needs a lot of handholding, another needs an assignment and the free-
dom to get on with it. Some need constant reminders, others will grind
to a halt in response to “nagging.” I had to carefully balance demands,
responsibility and support to bring out the best in each member.
In 2007, Autscape nearly ended. An interpersonal conflict escalated into
a full division of the committee into two factions. It was brutal, messy,
personal, and public. Those who believe that autistic people are always
honest and loyal, and that groupthink, backbiting, and interpersonal pol-
itics are NT failings we are immune to, are wrong. We may not engage
in these things with NTs on their terms, but in our own way, we are
quite capable of all kinds of bad behavior. By the time the dust settled,
 8 Autscape 119

6 months after the conflict started, about half of the organizers had left
Autscape permanently. They said that Autscape was fundamentally flawed
and doomed to fail.
One of the keys to Autscape’s long term success has probably been
that it has been a democratic organization from the start. Although the
conflict in 2007 led to the loss of many important and hardworking com-
mittee members, the organization did not rely wholly on any individual
for its survival. That crisis was an essential turning point in Autscape’s
development that ultimately led to it becoming more mature and robust
as an organization. The organizers who remained made some substantial
changes to our ways of working that have persisted.
In order to improve transparency and avoid any future allegations of
conspiracy or covert bullying, we formalized considerably, possibly exces-
sively. Our informal methods of decision-making and on-list discussion
gave way to monthly committee meetings in an online text-based chat,
with agendas and minutes published on the website. Meetings have served
as a good impetus for those who fail to do things without a deadline, and
provide a forum to ask questions of those organizers who don’t respond
to email.
Our company secretary at the time, Yo Dunn, worked hard with a
lawyer and a small group of volunteers to put together our new governing
documents and register Autscape as a limited company and a charity. This
process was finally completed in May 2011. The company registration was
to limit the organizers’ liability in case something went wrong. Prior to
that, if Autscape had failed to happen for any reason, the individuals on
the committee would have been responsible for any financial obligations
to the venue. In 2015, we came up against another administrative barrier.
If a charity has a turnover of more than £25,000 per year, they need to have
an independent examination of the accounts. Our accounts were fine, but
our documentation was not up to that, so we spent a year trying to keep
our income down while we worked on getting the necessary procedures in
place. This threshold has now been crossed, allowing us to choose larger
and more expensive venues. It is also now possible to have more than the
one event in a year, although that has yet to happen.
Autscape is autistic-led, but not exclusively autistic-run. We have, from
the very start, usually had one or two people on the organizing committee
120 K. L. Buckle

who do not identify as autistic, but we have maintained an autistic majority

without having to make rules or quotas to ensure it. Such a quota would
require all board members to openly identify as autistic or not. Most board
members already do so, but for various reasons, some people don’t, and
it is not Autscape’s habit to force individuals to do anything. We don’t
fear an NT takeover, because the whole culture is based on autistic ways
of working. In fact, we have had only minimal success at retaining NT
members. Our non-autistic organizers are seldom actually neurotypical—
they are always family members of autistic people who tend to have other
neurodivergent conditions such as ADHD, or significant autistic traits.
Having some non-autistic organizers can help with sourcing some of the
skills that are uncommon in autistic people. We find they are often better
at communicating with NTs, so they have made good venue coordinators,
form fillers, and phone call makers. Neurodiversity, which means having
NTs in autistic space as much as it does autistics in NT space, is a benefit
to the organization.
As organizers, we have had to learn that an autistic Utopia is impossible.
We often get suggestions or complaints from participants about things we
are already aware of, but due to our disabilities and limited resources, have
been unable to act on. For example, it has been suggested that Autscape be
longer, that we have more events, that we fundraise more, or that we pub-
licize the event more widely. Aside from any difficulty with doing tasks,
advertising may increase demand and we are struggling to keep up with
interest as it is. Quite often we have been told that we ought to have web
forums instead of or in addition to the email list we provide for social inter-
action of participants between Autscapes, but doing this properly would
require more of our tech people than they have to give right now, when
they have other priorities and demands on their limited capacity. One of
the most common suggestions in response to our occasional shortage of
resources to continually do more and better is, logically, to take on more
organizers. It may be counter-intuitive, but so far our experience is that
the social and communication demands of a larger team require more
resources than what they free up by taking on work.
 8 Autscape 121

Where Next
Currently, the biggest challenge to Autscape is meeting the demand.
Autscape has been steadily growing throughout its life, but the last two
years have shown a sharp increase to over 200 participants. With more
participants’ fees contributing to the program, we can select more presen-
tations from the increased number of proposals received, which, in turn,
cater for a larger audience. The main downside of all this growth is that it
excludes those who can’t cope with such a large group.
One way forward is to continue allowing Autscape to grow, but a more
manageable solution may be to have more events. We have taken a step in
that direction by separating the governance of the Autscape organization
from the planning of the Autscape event, which will allow separate groups
of organizers to manage each event. Autscape could then support events
of different sizes, styles, and locations. They could potentially even be in
another European country. This has been predictably complicated and,
also predictably, is taking more time than anyone thought it would or
should. However, we are now more or less prepared for another event
when an organizing team is ready to take it on.
I remember at the very first Autscape, now 14 years ago, walking through
the venue filled with autistic people chatting, laughing, learning, and
generally enjoying themselves, and thinking to myself, “I did this.” I found
it almost unbelievable, even as I saw it myself. It worked. I didn’t start
Autscape to be part of a movement or to be an activist. I also didn’t do it
to be part of a community or to meet other autistic people; I don’t even
like meeting new people. I do, however, like creating a little autistic space
where we can be the ones who are normal, a place where autistic people
can meet, learn, socialize, have a good time, and feel they are understood.
I started Autscape mostly by accident, but I continued because I wanted
to make something that would be a positive influence in autistic people’s
lives. It is.
122 K. L. Buckle

References
1. Dekker, M. (2010). Independent living on the autism spectrum (Electronic
mailing list). Retrieved from http://inlv.org/inlv-historic.html.
2. St. John’s University. (1999–2006). Autism and developmental disabilities list
(Archives). Retrieved from https://web.archive.org/web/20060113082637,
http://maelstrom.stjohns.edu/archives/autism.html.
3. Buckle, K. L. (2005). Autscape 2005 information pack. Retrieved from http://
www.autscape.org/2005/infopack.doc.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 9
The Autistic Genocide Clock
Meg Evans

Alarm Bells
When I first thought about creating a Star Trek fanfiction website in the
summer of 1999, I had no idea that the site would later become known for
a ten-year countdown timer warning of a potential genocide in the making.
That summer, everything in my life seemed to be going very well. I had
just found a good job after staying home with my kids when they were
little, and fun stories were all I had in mind for the Ventura33 website—
so named because I got the idea for it while driving along California’s
Highway 33 in Ventura, known formally as the City of San Buenaventura
(Fig. 9.1).
The topic of autism, along with society’s views of it, was not on my radar
at that point in time. Although I had seen the word used in reference to
me as a child, I thought it simply had to do with early childhood language

M. Evans (B)
Dayton, OH, USA
e-mail: Meg@megevans.com

© The Author(s) 2020 123

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_9
124 M. Evans

Fig. 9.1 The Autistic Genocide Clock by Meg Evans

development. I knew that the fact I’d learned to read and talk at about the
same time was unusual, but I didn’t understand what relevance it might
have in adult life. I was an early reader, while others in my extended family
had been slow to speak, and I simply took it for granted that everyone
developed at their own natural pace. People sometimes told me that my
speech sounded a bit odd, which I attributed to living in different parts of
the country as a child and getting my regional accents muddled. I didn’t
see that as significant either.
Sometime toward the end of 2002, I began to notice that there were
sensational stories cropping up in the mainstream media about “Asperger
syndrome,” a now-outdated term that meant autism without a speech
delay. I had not seen that term before and did not identify with it. The
stories all followed the same general pattern of describing children who
behaved in peculiar ways, thus supposedly causing their parents to lead
lives of intolerable misery. At first, I paid very little attention to that
narrative, dismissing it as a ridiculous pop-psychology fad that couldn’t
last long. After all, raising quirky children was certainly nothing new in
the history of parenting. The children described in those stories didn’t
strike me as all that odd anyway.
Far down in my subconscious mind, though, a few dots started to con-
nect. By late 2003, the picture had grown clear enough that my internal
alarm bells were sounding. Those sensational articles hadn’t gone away,
but instead were showing up more often. Their scope was not limited
to children but also encompassed autistic adults, who were commonly
described as freakish, incapable, barely human, and unsupportable bur-
dens on society. Internet searches only turned up more of the same, and I
began to realize that I was looking at a dangerous mass hysteria.
 9 The Autistic Genocide Clock 125

Aspergia
One site that I came across during those searches was an exception—the
UK-based forum Aspergia. Created in 2002, it aimed to spark critical
discussion of society’s attitudes toward autism by creatively framing the
issue in terms of speculative fiction. Aspergia’s featured story asked readers
to consider: What if—rather than being defined by a medical label—
autistic people were an ethnic minority group, descended from an ancient
tribe with a recognized history and culture? Would society then be willing
to accept, respect, and accommodate their differences? And if so, then why
wasn’t that happening in real life, and what needed to change?
Although the website’s name obviously was derived from the term
Asperger syndrome, the site was not exclusive to those who had received
that particular diagnosis. The forum community welcomed all partici-
pants equally and sought to encourage a respectful conversation about
what disability meant in relation to autism. Some members came to the
site believing that autism was inherently disabling, while some did not
view themselves as having a disability at all. Many informative discussions
took place regarding the social model of disability, which holds that peo-
ple become disabled not as the inevitable result of a physical or mental
condition, but because socially constructed barriers prevent them from
fully participating in society.
The existence of a forum where autism was discussed in terms of the
social model of disability may not seem remarkable by today’s standards;
but at the time, many people had never seen anything like it. Some had
grown up internalizing ugly stereotypes and myths, believing that they
never would have a place in society. Although others had a vague sense that
all was not as it should be, they couldn’t quite say how. The conversation
on Aspergia challenged participants to give more thought to the prevailing
cultural assumptions. It was a daunting and often uncomfortable process
of consciousness-raising.
Because I found it hard to understand why the culture was full of stories
about autism that diverged so fundamentally from my own view of the
world, I did some reading. I learned the awful history of what had been
done to people with developmental disabilities in the twentieth century—
eugenics, institutions, exclusion from schools and other public places.
126 M. Evans

Slowly it dawned on me that when I had changed schools several times

as a six- and seven-year-old, the reason hadn’t been—as I naively assumed
at the time—to try out different schools and see which one was a good fit,
like trying on clothes at the store. My mother, when I asked her, confirmed
that the school administrators had told her I was not welcome to stay, and
so she kept trying until she found a school that would keep me. This was
a few years before the federal government required schools in the United
States to educate all children.
Aspergia’s forum closed in July 2004. The site was a casualty of its own
success, in that it had grown much faster than its administrator—who
called himself Edan—had anticipated. As a consequence, the site never
had enough moderators to deal with the frequent arguments and flame
wars that inevitably resulted from challenging people’s worldviews.

Continuing the Conversation

Several former members of Aspergia, who believed that the conversation
needed to continue, started building their own websites. The most success-
ful in terms of sheer numbers was Wrong Planet, a forum site created by
two teenagers, Alex Plank and Dan Grover, who envisioned a welcoming
social space. Discussion of the more politically charged issues often took
place in a forum in the UK called Aspies for Freedom (AFF), founded by
Amy and Gareth Nelson. AFF was designed to include not only autistic
activists but also parents concerned about their children’s future.
On the AFF parenting forum, non-autistic parents sought advice to help
them better understand their children’s needs. Autistic members offered
suggestions, while also discussing civil rights concerns in other areas of the
site, where parents were welcome to participate if they wished. I took part
in some of these conversations under my forum nickname of Bonnie Ven-
tura. Describing myself as a person who belonged to a multigenerational
autistic family, I gently encouraged parents to recognize their own autistic
traits and to trust their instincts in raising their children. Among those
who joined AFF in early 2005 was Kevin Leitch, a British parent who
soon built the Autism Hub blog aggregator with the goal of constructively
bringing together parent bloggers and autistic activist bloggers.
 9 The Autistic Genocide Clock 127

I’d had the Ventura33 story website for about five years by then, and
it had grown into an archive that included not only my stories but also
those of several other contributors. Inspired by Aspergia’s use of fiction
as a catalyst for discussion of autism in the context of disability rights—a
concept that was becoming more commonly known as neurodiversity—
I decided to create a page on Ventura33 for that purpose. I put out a
call for stories featuring autistic characters and others with neurological
differences in the Star Trek universe, which I posted not only on fanfiction
writers’ lists, but also on AFF and other autistic community forum sites.
My goal for the neurodiversity page was simply to encourage my readers
to think a little farther outside their cultural boxes. I didn’t anticipate that
Ventura33 would play a major role in bringing together autistic activists
to organize for civil rights in real life. Rather, I had in mind that the stories
would promote reflection and constructive dialogue as a counterweight—
if only a small one—to society’s unthinking repetition of autism myths.

Countdown
Then I came across a disturbing news article published on February 23,
2005, which left me with a greater sense of urgency. Entitled “Autism
research focuses on early intervention,” it began by discussing studies
of siblings’ behavior and then moved on to government funding and
genetics. The author interviewed Dr. Joseph Buxbaum, head of the Autism
Genome Project at the Mount Sinai School of Medicine, and discussed
his expectation of “major progress in identifying the genes associated with
autism in the next decade” [1].
That in itself did not immediately strike me as cause for concern—after
all, one might expect a research scientist to be optimistic about work in
progress, and genetic research could potentially have many different aims.
But then I scrolled down a little farther and found this unambiguously
stated prediction:

Buxbaum says there could be a prenatal test within 10 years.

128 M. Evans

What I found most unsettling about this statement was not simply the
fact that it had been made, but that the worldview from which it sprang
was devoid of meaningful examination. The overall tenor of the article—
and, indeed, of the general public discourse surrounding autism at the
time—was that everyone agreed the world should not have autistic people
in it. The only question, as many saw it, was how to reach that goal. An
entire layer of critical inquiry into the underlying assumptions had been
effectively short-circuited.
I started composing a response to post on Ventura33, along with a link
to the article. I wrote that the possibility of a prenatal test for autism raised
significant ethical concerns. This was not an issue of abortion politics, as
I saw it; rather, it had to do with informed decision-making and the value
that our society places on different kinds of people. Government funding
to develop a prenatal test, together with stereotypes and misinformation
in the media that characterized autism as a devastating burden to families
and society, gave rise to a coercive environment in which pregnant women
would not be able to make truly informed decisions.
Because many autistic people go undiagnosed, I wrote, the total number
worldwide was likely to be much higher than was generally believed—
perhaps over 100 million. (More recent scientific estimates have confirmed
that this higher number is in fact likely.) This would be equivalent to
about one-third of the US population, or the total populations of the UK,
Canada, and Australia combined. As such, prenatal testing for autism
would amount to eugenics on the largest scale in human history.
Ending with a call to action, I asked my readers to visit other autistic
advocacy websites and, if possible, to create their own; to get involved
in real-life advocacy events; and to contact policymakers to express their
views. Consistent with the ongoing dialogue in the AFF forum com-
munity, I urged parents to work toward building a society where their
children’s lives would be valued.
My working title was “Autism Research and Prenatal Testing.” That title
seemed too bland, though; it didn’t convey a feeling of urgency. I asked
my husband, who is a software developer, to add a timer at the top of the
page counting down 10 years from the date of the news article. After he
added the code, “The Autistic Genocide Clock” was launched on May 22,
2005.
 9 The Autistic Genocide Clock 129

Drawing Attention
I posted the first group of stories on the neurodiversity page in June 2005
and got some comments by email. One of them was a question from a
student named Ari Ne’eman—was I involved in any real-life civil rights
organizations focusing on autism? No, I was not, I answered; but in my
opinion, such organizations were much needed.
Because Ventura33 was only a small fanfiction website, I wasn’t expect-
ing either the neurodiversity page or the clock page to get much attention.
The site was so small, in fact, that my husband had put both it and his
personal blog on a server in the basement using our basic residential Inter-
net connection. The server was just an old, slow desktop computer that
I had bought as surplus from my employer for 20 dollars, but that was
good enough because we got so little traffic.
It took me a while to realize that my site had in fact drawn more attention
than I’d anticipated. In late 2005 and early 2006, I did occasional Google
searches on the word “neurodiversity,” looking to see what new activist
websites had emerged. I noticed that the Ventura33 neurodiversity page
was consistently in the top ten results. At first, I assumed that was because
the concept was still new enough that there hadn’t been much written
about it yet.
Then one day, my husband said, “Hey, Meg, did you know that so many
people have been deep-linking to your clock page that we’re running out
of bandwidth?”
I told him, no, I hadn’t been aware of that. My husband was keeping
detailed statistics, though, and there was no doubt the clock page was
getting most of the increase in traffic. Eventually, we ended up moving
our websites to a virtual private server.

Autism Hub
Meanwhile, Autism Hub had gotten underway; there were about fifteen
blogs in the aggregator in early 2006, and it grew rapidly from there. Several
of its members had medical or other science backgrounds, and the early
Hub posts often warned about the dangers of quack treatments purporting
130 M. Evans

to cure autism. Disability rights topics were a large part of the discussion
too. The Hub’s initial members included Joelle (then Joel) Smith, whose
list of autistic murder victims was a precursor to the Disability Day of
Mourning.
The Hub’s parent bloggers—one of whom was Estée Klar, a Canadian
art curator who founded The Autism Acceptance Project and promoted
inclusion by way of the arts—often wrote about happy moments in their
everyday lives. At that time, images of autism in the mainstream media
had been so relentlessly negative that even these simple, cheerful posts
about enjoying family life went a long way toward changing the narrative
for the better.
In May 2006, the Hub’s bloggers erupted in outrage following the
release of a video entitled Autism Every Day by Autism Speaks, which
was then a newly formed organization. The video depicted the lives of
families with autistic children as a fate literally worse than death; one parent
featured in it said that she had thought about driving off a bridge with her
autistic daughter in the car. The producer, Lauren Thierry, suggested that
most parents of autistic children had such thoughts at one time or another.
Autism Hub promptly created an online petition entitled “Don’t Speak
for Us,” and many of the petition’s signatories commented on the risk that
the video and other similar depictions in the media might actually incite
child murder.
The informal community of bloggers at Autism Hub had a significant
impact in bringing disability rights issues surrounding autism into the
public consciousness. Although well-funded organizations such as Autism
Speaks largely dominated the discourse in 2006 and 2007 through tradi-
tional media, by this time society was becoming aware that other views
existed. Autistic activists felt more empowered to assert themselves in the
public sphere and to envision a future without the barriers created by
ignorance.

Moving Toward Acceptance

The Autistic Self Advocacy Network (ASAN) was incorporated in Novem-
ber 2006 as a nonprofit organization run by and for autistics. Seeking to
 9 The Autistic Genocide Clock 131

address public policy issues relating to autism from a disability rights

perspective and to teach self-advocacy and leadership skills, it began as
a small, all-volunteer group that declared “Nothing About Us Without
Us.” In December 2007, ASAN successfully organized an advocacy effort,
together with Autism Hub’s bloggers, which brought about the removal of
billboards in New York entitled “Ransom Notes” that had depicted autism
and other disabilities as evil kidnappers snatching children.
I was invited to join ASAN’s board toward the end of 2008. During my
first two years of service as an ASAN board member, it became apparent
how quickly the culture was changing in the direction of acceptance. Pres-
sure from autistic and cross-disability activists convinced Autism Speaks
to disavow its September 2009 release of the video I Am Autism, which
was another portrayal of autism as a child-snatching, family-destroying
monster. The mainstream media and policymakers became more careful
to use accurate and respectful language in referring to autism. President
Obama appointed ASAN founder Ari Ne’eman to a term on the National
Council on Disability that began in 2010.
I took down the original Autistic Genocide Clock page in July 2011 and
posted a revised page [2] because I felt that autistic activism—including
the efforts of Aspergia, AFF, Autism Hub, ASAN, and many others—had
improved the culture enough so that routine prenatal testing for eugenics
purposes would not be widely seen as desirable. Moreover, by then sci-
entists had learned that the genetic factors involved in autism were very
complex, which made it unlikely that any simple, routinely administered
test would be developed. (Some tests do exist for single-gene conditions
associated with autism, and this remains a concern to the extent they are
used for prenatal testing rather than to confirm a clinical diagnosis.)
On the revised page, I wrote that although the cultural and political
landscape had changed for the better in many ways since 2005, the history
of that time period and the activists’ determined efforts should not be
forgotten.
132 M. Evans

References
1. Herera, S. (2005, February 23). Autism research focuses on early intervention.
CNBC. Retrieved from http://www.nbcnews.com.
2. Evans, M. (2011, July 16). Autism research and prenatal testing. Retrieved from
https://www.ventura33.com/clock.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 10
Shifting the System: AASPIRE
and the Loom of Science and Activism
Dora M. Raymaker

My Introduction to the Autistic Advocacy

and Neurodiversity Movement
When I co-founded the Academic Autism Spectrum Partnership in
Research and Education (AASPIRE) in the summer of 2006, I was already
grounded in my identity as an Autistic person, autistic rights activist,
and general troublemaker. That grounding had taken time, however, and
struggle. Growing up, I had been the stupid one, the confused one, the
damaged, scary, aloof, broken, worthless, lazy, crazy, alone, alone, alone,
one-of-a-kind, never-trying-hard-enough, busted, always alone one—and
I had made peace with that. I had learned to love it, and worn it for a skin.
Then, in 1999, with the tsunami-like smack of a co-worker’s incorrect
assumption that I already knew what I was, I learned I was none of those
things. I was Autistic. Even positive, healthy change—as this was—can

D. M. Raymaker (B)
School of Social Work/Regional Research Institute for Human Services,
Portland State University, Portland, OR, USA
e-mail: draymake@pdx.edu

© The Author(s) 2020 133

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_10
134 D. M. Raymaker

be traumatic if it requires redefining Self. It is the disintegration of the

old identity that is terrifying, not the truth of the new one. My jour-
ney of redefining Self started with my friends and co-workers presenting
me with the truth, reached a climax with a clinical diagnosis during a
period of intense crisis, and ended with my embrace of the neurodiversity
movement.
When I first encountered the neurodiversity movement in the early
oughts through the writings of Jim Sinclair, Mel Baggs, Joelle Smith,
and others on the autistics.org [1] site and disability/autistic rights blogs
and forums (like the This Way of Life [2] blog and the old LiveJournal
Asperger’s community group), I was not new to activism, nor to chal-
lenging the social order. I’d been radicalized (woke) in the gay (Lesbian,
Gay, Bisexual, Transsexual, Queer, and others, LGBTQ+) rights move-
ment of the late 1980s. I’d marched, created, subverted, and put my body
at risk for my civil rights back then, starting with basics, like the right
to go outside without being murdered. So when I first started exploring
Autistic identity, the first thing that struck me was the similarity between
being Autistic and being queer. Nothing brought me to the neurodiversity
movement, and there was no choice involved: the world needs all minds
just as it needs all genders, sexualities, and other vectors of diversity. As
a systems scientist I know diversity provides social and ecological systems
with flexibility, resilience, innovation, and a greater chance of optimal
survival. As a human rights activist, I know all humans are to be valued.
I always have, and always will fight for my communities of identity, and
for other marginalized communities, because the empowerment of one
benefits us all. I will always pay it forward from the activists who came
before me to those who will come after; we are connected in a lineage of
social justice.

Individuals and Organizations Critical to My

Contribution to Neurodiversity and Autistic
Activism
In the summer of 2006, I met AASPIRE’s co-director, and my mentor and
now long-time collaborator, Christina Nicolaidis—a physician-researcher
 10 Shifting the System: AASPIRE and the Loom … 135

and parent of an autistic child who also has experience in feminist and
queer activist spaces. Christina, adorably, invited me to an autism scien-
tific journal club because she wanted to meet me (apparently, my postings
to the parent-focused Portland Aspergers Network e-mail list were helpful
to her), and knew I would never say yes to unstructured social time. We
read maybe three research articles, all of which provoked outrage, before
deciding not to complain but to do something about the problem we were
seeing. “The problem” being autism research that was poorly designed,
stigmatizing, offensive, useless if not downright harmful, unethical, or
otherwise failing to be of practical benefit to actual autistic people or the
A/autistic community.1 This is the very problem an approach to science
called Community Based Participatory Research (CBPR) has been devel-
oped to solve.
CBPR is an approach to scientific inquiry that includes people from
communities of identity as co-researchers in all phases of research that
impacts their community, starting with deciding what to research in the
first place [3]. The approach grew out of the field of public health in
response to inequities experienced by communities defined largely by race
or ethnicity [3]. CBPR has since been used with communities defined by
many other identities; however, at the time of AASPIRE’s founding, it had
never been used with the A/autistic community. CBPR is an emancipa-
tory approach to research, which explicitly acknowledges the connection
between knowledge and power, and attempts to return power to commu-
nities that experience oppression. CBPR makes no attempt to decouple
science and activism; instead, it seeks to use the rigor of science to disrupt
the ways that science contributes, both directly and indirectly, to institu-
tionalized oppression. Science can then become both better at answering
questions about the world (i.e., be better science), and a vehicle of empow-
erment.
Coincidence of timing and circumstance is as much a factor in successful
activist work as skill, and when Christina and I met at that autism journal
club in my living room in the summer of 2006, she was using CBPR

1 Capital“Autistic” is used to denote people who culturally identify as Autistic (but may or may not
have an autism diagnosis) and lowercase “autistic” to denote people who may have a diagnosis but
not culturally identify as Autistic. A/autistic is intended to be inclusive of both overlapping and
interconnected communities of identity.
136 D. M. Raymaker

with communities of color to conduct culturally responsive depression

care and interpersonal violence research. She’d had the same conversations
about problems with traditional approaches to research with her African
American and Latina partners that she was having with me about autism
research. I was already an activist deeply committed to civil rights and
grounded in the neurodiversity and disability rights paradigms. Thus,
AASPIRE was born of a deep need for autism research that is driven by the
A/autistic community, a recognition of the potential of science to empower
the A/autistic community, and a once-in-a-lifetime collaboration between
an Autistic activist (who grew up to be an academic researcher) and an
academic researcher (with a history of activism) who ended up being best
friends.
However, two individuals and a handful of friends do not make a
research group, and so Christina and I went looking for additional col-
laborators, a process which took some time. CBPR typically forms part-
nerships between community-based service or policy organizations and
academic institutions to co-conduct research, drawing on the strengths of
their respective networks. The problem was there were so few Autistic-
run organizations at the time, and those that were well-established, such
as Autism Network International (ANI) and the Global and Regional
Asperger Syndrome Partnership (GRASP), had missions focused elsewhere
from service provisioning or policy change. The only community-based
organization with a service or policy focus we knew of that was run by
actual Autistic people was some brand-new thing called the Autistic Self
Advocacy Network (ASAN) that we thought (in our own fledgling igno-
rance) may or may not even have been a real thing. Initial conversations
seemed promising though, and by 2007 we had decided to collaborate.
I met ASAN’s co-founders Ari Ne’eman and Scott Robertson at the very
first talk AASPIRE did at a scientific conference (the 2008 meeting of
the American Association of Intellectual and Developmental Disabilities
[AAIDD] in Washington, DC). At that time, AASPIRE had yet to com-
plete a research study and didn’t have any business, really, presenting at a
research conference other than that we were the only people in the coun-
try doing community-engaged research with the A/autistic community. I
remember sitting in my hotel with Ari and Scott as they asked me how I
felt about the medical (deficit) model of disability. I fell out my chair—as
 10 Shifting the System: AASPIRE and the Loom … 137

I am wont to do when not restraining my hyper-kinetic tendencies, hence

my general mistrust of furniture—and proclaimed with the semi-echolalia
I was relying on more heavily at the time, “Better dead than med!” They
laughed, and I laughed, and we were all relieved that we were on the same
neurodiversity page. They asked me to be on their board and ASAN was
the first community-based organization to partner with AASPIRE; we’ve
helped each other out ever since. In more recent years, AASPIRE has also
developed a strong relationship with the Autism Society of Oregon; how-
ever, Autistic voice always has been, and always will be, privileged above
organizations that are not self-advocate led. I am happy that there are now
many more Autistic-led organizations serving a wide variety of missions.

Intended Goals of My Neurodiversity

or Autistic Activism
Over the years, I’ve contributed to the neurodiversity movement and autis-
tic activism in various ways, always with a goal of social justice. Some
contributions have been successful: I yelled through a speech device at
a town hall meeting, resulting in the governor adding a role for a self-
advocate to the state’s Autism Commission, and then serving in that role
for two years. Others have been less successful: I blogged on autism issues
for Change.org and mostly succeeded in getting death threats and par-
alyzing anxiety. The success of some contributions remain to be seen: I
have several works of fiction published by Autonomous Press (autpress.
com), a neurodivergent-run publisher, that center queer neurodivergent
characters and attempt, as with pretty much all things I’ve ever done, to
subvert systems of oppression [4, 5]. But out of all of the neurodiversity
activism I’ve done (see doraraymaker.com), my work with AASPIRE and
in the sciences is both what I am most proud of, and what I feel has been
the most successful.
My book chapter (written 2010) in Worlds of Autism, “Participatory
research with autistic communities: Shifting the system” [6], details—in
a wide-eyed, fresh-out-of-my-Master’s-program way—the dynamic I still
believe is at play between science, society, and community. Regardless of
the struggles scientists may have in 2018’s political climate, scientists still
138 D. M. Raymaker

have more power than many people in oppressed communities. Because

of the power society has to marginalize or center communities, empower-
ing communities to influence science—and encouraging scientists to be
influenced by communities—is, I believe, a point of leverage. In other
words, if we think of behavior in a complex system (like human society)
as generated by its structure, then changing the structure will change the
behavior. Change the dynamic between scientists and autistic people, and
the behavior of the entire system shifts.
Also, I’m a much better scientist than I ever was policymaker or politi-
cian, and far more suited to the calm of the lab than the drama of social
media. There are plenty of peers in the movement who have those areas
covered. What my scientific activism is intended to accomplish can be
summarized in AASPIRE’s mission statement [7]:

• To encourage the inclusion of people on the autism spectrum in matters

which directly affect them.
• To include people on the autism spectrum as equal partners in research
about the autism spectrum.
• To answer research questions that are considered relevant by the autistic
community.
• To use research findings to effect positive change for people on the
spectrum.

Steps to Meet the Intended Goals

AASPIRE conducts autism services research for adults. This is an area in
which there continues to be a paucity of academic attention. The topics
we focus on are an intersection of what the Autistic community priori-
tizes, and what we have the scientific expertise on our team to fund and
successfully carry out. To date, this has primarily been in the field of health
and mental health services, though recently we have branched out into
employment, and are open to any type of research that meets our mission.
A lot has been written in the academic literature about how AASPIRE
operates [8–10]. To summarize, we meet and communicate in ways that
 10 Shifting the System: AASPIRE and the Loom … 139

equalize power. We include a majority of autistic people on the team, and

the whole team makes decisions about the research together. We respect
each other’s expertise and work hard at building trust and a safe—though
not always comfortable—space for co-learning between autistic commu-
nity members and academic allies. We have always had some members
with intersecting identities in the group, for example, our co-directors
include an autistic academic and a parent academic—which I think helps
us translate respectfully between each other’s cultures, and find effective
ways to share power. We try to select new team members for people who
prioritize getting the work done.
We also go through the steps typical of health and social services
research: come up with an idea, obtain funding to realize it, carry out
the research, disseminate the results to both the scientific community and
the public (which, for us, includes the A/autistic communities). Part of
the basic business of research also involves participation in professional
meetings and conferences, engagement in academic and popular science
forums like Reddit, and working with policy and scientific entities like the
Interagency Autism Coordinating Committee (IACC) to shape research
priorities and the direction of future funding.
It is through this normal business of science that I feel I, and AASPIRE,
have had the most success in shifting the system. In a way, this book chapter
is a “ten years after AASPIRE’s founding” companion to my position in
Worlds of Autism as it asks me to reflect: Have we shifted the system?
Has engaging autistic people in autism research made any difference in
the way society and public policy views the A/autistic community? Have
we generated a behavioral change through our small influence on the
broader structure of science? Have we made life any better for people in
the A/autistic community?
Between 2006 and this writing in 2018, AASPIRE has obtained funding
to complete a series of five healthcare studies, one employment study, start
cutting-edge research on autistic burnout, and create an online, interactive
Healthcare Toolkit for autistic adult patients, their supporters, and their
healthcare providers (autismandhealth.org). Science moves slowly, and it
can take a lot of time to see change from research and practice. However,
our results indicate that both patients and healthcare providers found the
Toolkit to have positive impact on their healthcare interactions [11], and
140 D. M. Raymaker

we are continuing to find ways to implement the intervention effectively.

In the community, numerous autistic people, parents, and clinicians have
told us the Toolkit has made a positive difference in their lives. As we
complete preliminary steps of learning how best to serve autistic people in
employment and other aspects of well-being, we hope to continue to cre-
ate interventions that directly help the community. Simply participating
in CBPR can also help the community; an evaluation of a study which
included many members of AASPIRE found that being a co-researcher is
empowering and may enhance self-advocacy skills [12].
Members of AASPIRE have spoken on a variety of topics at the IACC,
the US government body that sets federal priorities for autism research;
people with close ties to, or then-collaborators with, AASPIRE successfully
pushed that body to include autistic voice on their board—and sat on their
board. I have witnessed multiple “a-ha” moments from scientists and stu-
dents at my talks when they realize inclusive research is both possible and
desirable. We have given our data to ASAN to use for making policy points.
Both Christina and I have done highly attended Reddit Science Ask Me
Anythings (AMAs) [13, 14] about AASPIRE’s work, which has enabled us
to reach the broader public with both neurodiversity ideas and the practical
results of our research. We have been invited speakers at multiple confer-
ences and events, either to discuss our findings or to discuss how to con-
duct inclusive research, more and more as time goes on. Our publications
on neurodiversity have been loudly cited, while our publications on our
research have quietly infused the next generation of academics interested in
conducting research in collaboration with the A/autistic community (see
aaspire.org for an ongoing list of AASPIRE’s publications and activities).
Recently, due in part to AASPIRE’s visibility in the field, Christina was
asked to start a new journal Autism in Adulthood (https://home.liebertpub.
com/publications/autism-in-adulthood/646) that includes A/autistic peo-
ple (both scientists and not, including myself as Associate Editor) in all
aspects of its editorial processes. The power that I, and my colleagues,
have as peer reviewers in other journals to reject articles that are disre-
spectful, stigmatizing, or poorly designed is significant. Strangers have
told me how AASPIRE’s work has impacted community—recently, an
Autistic counselor at a medical training I did told me they had been using
AASPIRE’s Healthcare Toolkit for years with their clients. I have obtained
 10 Shifting the System: AASPIRE and the Loom … 141

my Ph.D. and become the first openly Autistic person to get funding from
the National Institute of Mental Health (NIMH) to conduct autism ser-
vices research; I recently returned from an NIMH meeting where I was
able to discuss inclusive research with colleagues and policymakers. My
existence is an act of resistance.
Ten years ago, any one of these things would have been unthinkable.
Ten years ago (or thereabouts), AASPIRE was receiving comments on
its grant proposals like “there is not adequate evidence that the self-reports
of individuals on the autism spectrum are valid or reliable” (Anonymous,
2010). Ten years ago, we in the autistic rights movement were fighting
to get people to believe autistic adults existed at all. Now our work is the
leading edge of a new movement of inclusive, participatory research with
autistic people worldwide [15].
It is neither AASPIRE’s nor my work alone that made change possi-
ble—it is the whole of the autistic, neurodiversity, and disability rights
movement chipping away at the status quo, being relentless in its march
toward social justice, and transmuting its collective rage into sacred anger
to burn down everything in its way in order to build a more just and
inclusive system. Nothing about us without us.

My Work’s Place in the Broader Movement

AASPIRE works within the sphere of academic health and social services
research to conduct projects the A/autistic community wants done. I have
been capacitated by that work to extend more broadly into the wider neu-
rodiversity and disability communities. I’ve worked with the developmen-
tal disabilities community on research examining connections between
violence, disability, and health with the Partnering project [9, 16]. I’ve
worked with women with intellectual disabilities and autistic women to
understand their experiences with pregnancy and pregnancy decisions, and
develop peer-led informational videos [17]. I’ve worked with the broader
disability community on a peer-developed abuse awareness and prevention
program [18]. I’ve worked with young adults who have experienced first
episode psychosis on developing peer-created interactive online tools to
142 D. M. Raymaker

reduce stigma and increase self-determination for others in their commu-

nity [19]. I am the faculty advisor for my university’s Disability Alliance
student group, and they are doing important activist work at a local, uni-
versity level [20]. Because, again, we are nothing if not a collection of
intersections of our identities, and the empowerment of one benefits us
all.
There is no wrap-up for this chapter, no succinct “lesson learned.”
AASPIRE, and my intersectional positioning as a neurodivergent, queer,
and gender queer activist and scientist remains an active, ongoing exper-
iment in whether or not restructuring the way science is conducted can
shift the system toward justice for all.

What Neurodiversity Means to Me

Neurodiversity, to me, means both a fabulous celebration of all kinds of
individual minds, and a serious, holistic acknowledgment of the neces-
sity of diversity in order for society to survive, thrive, and innovate. It
means identity, belonging, and community. It means I am not broken,
not alone, and neither are my siblings standing with me beneath that
huge, multi-colored neurodiversity umbrella: we the autistic, the mad,
the weirdly-wired, the queer, the crippled, and the labeled with neurodi-
vergent diagnoses like flowers that glorify our beautiful bodies and minds.

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Open Access This chapter is licensed under the terms of the Creative Commons
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holder.
 11
Out of Searching Comes New Vibrance
Edited by Ren Stone

Sharon daVanport

My unwavering love affair with words led me down a melodic road more
than once in my lifetime. Spending summer vacations reading dictionaries
thrilled me as much as swinging from the vines in the woods near my
childhood home.
And so it was in 2007 that I found myself staring curiously at my com-
puter screen. I was captivated by a catchy turn of phrase that was foreign
to me (“Nothing About Us Without Us”)—and a word (“neurodiversity”)
that I had never read in any of the dictionaries I’d spent my formative years
teething on. I continued gazing, as my synesthesia (where the stimulation
of one sense can automatically lead to the stimulation of a second sense)
and ideasthesia (where the activation of a concept can automatically lead
to the perception of color) translated the new word and turn of phrase
into several vibrant colors and harmonious sounds (“Types of Synesthesia”
[1]).

S. daVanport (B)
Washington, DC, USA
e-mail: sharon@awnnetwork.org

© The Author(s) 2020 147

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_11
148 S. daVanport

Earlier that same day, I attended an autism walk in my community. I

was attempting to connect with other families and other autistic people. I
didn’t know much about the host organization other than the information
I found on their website.
Later that evening, I went online to share how I had participated in my
community’s Autism Speaks walk. Within seconds, I received a private
message from an acquaintance in the chatroom. With horror, I began
reading a chilling account of an autistic girl named Jodie and her mother,
Alison Singer, who was then a staff executive at Autism Speaks. Singer was
featured in a documentary Autism Every Day [2], wherein she brazenly
recounted that she had “contemplated putting Jodie in the car and driving
off the George Washington Bridge”—all the while Jodie could be seen on
camera playing in the background, within earshot of her mother.
Sickened by what I had just read, I immediately threw myself down
a search engine rabbit hole. I found the video of Singer’s interview and
watched for myself Autism Every Day [2]. With utter disbelief, I viewed
the film clip while struggling to swallow as I wiped the tears from my eyes.
I couldn’t wrap my mind around this mother’s apparent lack of empathy
and dismissal of her own disabled child. Singer, with a slight smile on her
face, looks directly into the camera as she further admits that the only
reason she didn’t follow through with killing Jodie was because she had
another daughter. I wondered how Singer found herself in an executive
position of an autism organization if she was openly discussing thoughts
of murdering her autistic daughter.
Nothing made sense.
Nothing.
I felt my fingers sweep across the keyboard as they took on a life of their
own. My mouse clicked on link after link after link, and then something
caught my eye. I found myself staring at a blue screen with small black
font. I had stumbled upon the Autistic Self Advocacy Network (ASAN)’s
website (autisticadvocacy.org). I began to relax as I absorbed the affirming,
precise, and confident language that emphasized the importance of self-
advocacy, activism, and a call to action. ASAN’s message was the complete
opposite of anything I had ever come across in the autism community to
date. Instead of evoking feelings of doom and fear, I had felt a renewed
sense of hope and empowerment.
 11 Out of Searching Comes New Vibrance 149

Little did I know that my life was about to change. For the first time
since entering online communities, I was reading messages about autism
acceptance instead of the drivel of causation and cure. My mind was
racing, and I ended up staying awake all night reading everything on
ASAN’s website as well as their linked articles.
I took several breaks throughout the night as I sat on my back porch
piecing together recent conversations I had engaged in with my son which
now became clear to me as the starting point on the path toward my
understanding of autism acceptance as opposed to a cure. Everything
transpiring that night seemed to be the culmination of my deepest desire
to accept my son and myself as complete and whole people—perfectly
imperfect, as all humans are in this world.
I had so much racing through my mind; how many more words
expressed succinctly what I would experience in this flood of feelings?
The euphoria was drowning me…and then I was sitting; that catchy turn
of phrase and new locution was right there in front of me. Everything I had
read that night on the ASAN’s website ran circles through my mind while
I read kept returning to this newly discovered quote, “Nothing About Us
Without Us” and this new word: neurodiversity.
It all rang true; it felt right. Learning about neurodiversity and the
importance of autistic people being part of all conversations and every
decision involving their lives made absolute perfect sense. So much so
that it was hard to grasp that I had never thought of their importance
before that night.
Over the next few months, I often struggled to digest the onslaught of
information I was taking in. Sometimes the activist bloggers I followed
felt loud and I sensed when their energy would trigger my PTSD. All the
same, I appreciated the importance of their work and continued to push
forward. I knew that no matter how tough it was to hear the experiences
of autistic people fighting for their rights, I needed to understand. I would
at times get overwhelmed and go offline for up to a week to process what I
was learning. Then I’d return to take in as much as I could before I needed
another break.
I learned quickly that I had spent my life in ignorance as it pertains to the
injustices experienced by people with disabilities. The more I researched,
150 S. daVanport

the more I discovered the importance of social justice activism and its vital
place in the world.

Out of Searching Came Community

Neurodiversity soon became something that I intimately understood as
the all-inclusive acceptance of every neurological difference without excep-
tion.
I further came to appreciate that neurodiversity didn’t leave anyone
out. Even the opponents of this concept reaped the benefits of the work
by neurodiversity activists. It didn’t matter whether they agreed with the
concept or not, they personally benefited. Furthermore, their children did
as well, as the specific premise of neurodiversity is full and equal inclusion.
It wasn’t too long before I reached out to the ASAN, and over the
next couple of years I developed friendships with ASAN’s founders, Ari
Ne’eman and Scott Robertson.
One of the most influential youth activists for disability rights during
that time was Savannah Logsdon Breakstone. Savannah and I developed a
close friendship which eventually led to the ideas that ultimately influenced
the beginning of Autistic Women and Nonbinary Network (AWN) in
January 2009.
One of the greatest life lessons that I learned during the early years
of my involvement in the autistic community is that we are no different
than any other community of people; though we are linked by a familiar
neurology, we are still individuals in our own right, with differing opinions,
contrasting ideas, and conflicting access needs. When you put all of that
together with different personalities, it makes for a brilliantly vibrant and
sometimes challenging community.
By 2008, I had developed friendships with several other autistic women
through online groups. Savannah and I, as well as many of our friends
found it difficult to fit into many of these groups, and we found ourselves
searching for a community of women with powerful, balanced, and non-
hierarchical leadership that shared our core beliefs of autism acceptance
and disability rights, as well as an understanding for increased advocacy
 11 Out of Searching Comes New Vibrance 151

and resources as it relates to autistic women and the gender disparities

they face.
After several more emails of encouragement from Savannah, I decided
to take the plunge. I contacted one of my good friends and web developer,
Lori Berkowitz of BeeDragon Web Services (beedragon.com) to discuss the
possibility of forming an online community and forum for autistic women.
Lori and I had gotten to know one another over the past year through our
involvement in another group, and we had also worked together briefly
on another website project.
Within a few short months, Lori had the website and forum ready to
launch. Autistic Women & Nonbinary Network officially went online in
January of 2009 (awnnetwork.org). Those early days were full of nervous
energy. Ari Ne’eman of ASAN was a huge help with offering tips and
guidance—do’s and don’ts—when creating an online presence.
I reached out to several spectacular autistic women to form Autistic
Women & Nonbinary Network’s founding board of directors: Sandy Yim,
Tricia Kenney, Lindsey Nebeker, Savannah Logsdon Breakstone, Corina
Becker, and Lori Berkowitz were AWN’s founding superstars in the early
years. What we originally perceived as an online forum type of community
quickly grew larger than we ever imagined.
In 2009, Tricia Kenney and I created and hosted AWN’s BlogTalk
Radio Show (blogtalkradio.com/autism-womens-network), and by 2010,
Autistic Women & Nonbinary Network had gained national recognition.
In April, I was invited to represent AWN at a White House meeting on
World Autism Day, and to participate in discussions with President Barack
Obama’s Administration related to their ongoing efforts to better support
autistic individuals. In July, I was invited back to Washington, DC for
the White House’s 20th Anniversary Celebration of the Americans with
Disabilities Act.
There seemed to be no letup with how quickly Autistic Women &
Nonbinary Network was growing. Autism research has historically been
focused on young school-aged boys, and it was becoming increasingly
evident that AWN was fulfilling a great need in our community by keeping
the focus on advocacy, resources, and research for autistic women and girls
and non-binary people.
152 S. daVanport

AWN steadily became a regular participant in national autistic-centered

conversations, and we began seeking opportunities to widen our intersec-
tional activism. I am of the firm belief that a decision-making board or
supervisory board’s composition should be representative in gender and
race. Once a predominantly white cis board of directors, we as a board
recognized our need to change and have been intentional about making
sure representation is diverse because that is what makes a strong organiza-
tion. AWN’s current board representation is inclusive with intersectional
diverse leadership. For the last three years (as of 2019), the board has con-
sisted of mostly people of color and has always been majority LGBTQ+
members. To speak more directly to that intersectional diversity, in 2018,
we changed our name from Autism Women’s Network to Autistic Women
& Nonbinary Network.
From its inception, Autistic Women & Nonbinary Network has strived
to provide our board members with personal accommodation requests.
This ultimately led to all board meetings being conducted solely online,
and since 2012 our meetings have been exclusively held via text-based/real-
time communications.
AWN sees itself as part of the wider disability rights movement. Unde-
terred in our quest to fight for autistic rights, we appreciate our place as
being part of the greater civil rights movement for disabled people. In this
spirit, we are currently working on leadership development for our com-
mittee for our initiative Divergent: when disability and feminism collide
(facebook.com/DivergentFeminism).

Divergent works to change how disabled women are commonly perceived

within society while challenging the myths of our inferiority, both as women
and as disabled people. We explore the interactions between sexism and
ableism within both disabled and nondisabled communities. We seek to
offer perspectives on gender and disability by emphasizing non-traditional
femininity and non-traditional feminism. [3]

Reflecting on the years gone by, I can’t help but feel immense gratitude
for all the people and experiences along the way. Time has a magical way
of bringing about clarity of purpose. The impact of this clarified praxis
 11 Out of Searching Comes New Vibrance 153

opened conversations around the greater disability community, helping

us as an organization to expand our mission. Most recently, we learned
in March 2019 that Lori’s tireless work to build our online platform had
led to recognition by the United States Library of Congress as a cultur-
ally significant contribution to society and our content is now archived
nationally. The Library of Congress states that AWN’s website has been
selected “for inclusion in the Library’s historic collection of Internet mate-
rials related to the Women’s and Gender Studies Web Archive” as they
consider our website to be an “important part of this collection and the
historical record.”
Even with all the progress made over the years with respect to disability
rights (and specific to autism) we still live in a lopsided world which
measures a person’s worth based upon false premises. Ableist rhetoric taints
the conversations which lead to discrimination. And still, here we are,
Advocates and Activists, with even more vigor and determination in the
face of all that has dared to silence us. Despite the uneven roads we often
travel, we know without a doubt that we will not be erased. It’s been an
amazing journey so far, and I’m looking forward to the years ahead and
experiences yet to come (Fig. 11.1).

Fig. 11.1 Autistic Women and Non-Binary Network tagline

154 S. daVanport

Neurodiversity is for everyone

Nothing About Us Without Us!

References
1. Synesthesia.com. (n.d.).Types of synesthesia. Retrieved from https://synesthesia.
com/blog/types-of-synesthesia.
2. Watkins, J., Solomon, E., & Thierry, L. (2006). Autism every day (Documen-
tary). USA: Milestone Video, The October Group.
3. Liebowitz, C. (2013, December 17). Divergent: When disability and feminism
collide (Web log post). Retrieved from https://awnnetwork.org/divergent-
when-disability-and-feminism-collide.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 12
Two Winding Parent Paths
to Neurodiversity Advocacy
Carol Greenburg and Shannon Des Roches Rosa

Shannon Des Roches Rosa: Encountering

Neurodiversity as a Terrified Outsider
I came into neurodiversity activism sideways. It isn’t the main reason I
co-founded the online nexus and book Thinking Person’s Guide to Autism
[1]—the goal at the time was to debunk autism misinformation, and pro-
vide useful, evidence-based resources for autistic people, their families,
and autism professionals—but neurodiversity, with its respect for and cel-
ebration of diverse neurologies, ended up being our organization’s guiding
principle.
I didn’t know the word “neurodiversity” in 2003, when my son was
diagnosed with autism. I wish I had; maybe I wouldn’t have fallen so hard
for misinformation about vaccine, causation, and autism cures. I admit

C. Greenburg (B)
New York City, NY, USA
S. D. R. Rosa
Redwood City, CA, USA

© The Author(s) 2020 155

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_12
156 C. Greenburg and S. D. R. Rosa

that being exposed to that era’s sensationalistic and negative media mes-
sages about autism made me vulnerable to false-hope-based cure hawkers,
and that I put my son through “treatments” that were a waste of time and
money.
I will never stop being ashamed of how, under the guidance of a medical
doctor who convinced me and my husband that he could “treat” autism, I
subjected my autistic preschooler to a full autism quackery barrage: innu-
merable supplements and dietary restrictions, pseudoscience “electrical
field” treatments, vitamin B12 injections, and even preparation for chela-
tion—all of which I publicly detailed at my personal blog squidalicious.
com ([2]; though I was writing under the pseudonym “Squid Rosenberg”
at the time).

Rejecting Autism Quackery

Though it took too long, I eventually wised up to the fact that no child
deserves to be treated as a fixer-upper rather than a fully present human
being—especially the sweet little boy I was supposed to be fighting for.
I will always be grateful for the frank talking-to my medical professional
father-in-law gave my husband and me on not subjecting our son to
chelation “treatment”, as well as my guidance from generous science- and
neurodiversity-minded individuals about autism origins and autistic ways
of being. The only way to pay back that debt is to pay it forward.
Once I realized that we had been not only duped but fleeced by autism
quacks, and were making my son miserable while autistic rather than
non-autistic, since he was born with his autistic brain, I became hell-
bent on helping others avoid my very avoidable mistakes. I shared my
autism and parenting epiphanies publicly, not only on my blog, but in
Steve Silberman’s book NeuroTribes [3]—mortifying though it remains to
detail my early fear and ignorance regarding my own child’s needs.
I also founded Thinking Person’s Guide to Autism (TPGA) in 2010
with Jennifer Byde Myers, Emily Willingham, and Liz Ditz. We set about
gathering evidence-based autism resources presented in straightforward
but supportive terms, addressing some of our community’s starker realities,
as well as barriers to accessing services and accommodations. We started
 12 Two Winding Parent Paths to Neurodiversity Advocacy 157

by publishing articles on our website, with the best going into our 2011
book. We also built vibrant social media communities.

Learning Why Neurodiversity Matters from Insider

Perspectives

One of our first published essays, sourced by Ditz, was Mike Stanton’s
“What Is Neurodiversity?” [4]—also one of my first exposures to the term.
Stanton emphasized the need to respect autistic ways of learning and per-
ception as not just “different” but legitimate. We also began working with
more autistic authors, and realized having an autism organization with
no diagnosed autistic team members was both inappropriate and embar-
rassing. We invited Autism Women’s Network officer Carol Greenburg, a
skilled editor as well as an autistic mother of an autistic son, to join our
team. Thankfully she agreed to do so, to TPGA’s ongoing benefit as well as
mine—Carol has become one of my dearest friends, in addition to being
a treasured colleague.
As TPGA grew and expanded, and our author base skewed increasingly
autistic, my neurodiversity education grew, along with that of many of our
community members: as an autistic community outsider I can’t under-
stand the autistic experience without access to autistic insights, and nei-
ther can other non-autistic community members—especially since autistic
experiences, traits, perspectives, abilities, and personalities are multitudi-
nous, even as autistic commonalities unite the community.
I have become reliant on neurodiversity-informed perspectives, on the
insights of people who describe the reality that my mostly non-speaking
autistic teenage son and other autistic people experience, and actually
help make the future they deserve to happen. Without the neurodiversity
concepts of respecting and supporting different minds and abilities, with-
out the inclusiveness neurodiversity demands, autism advocacy efforts risk
becoming factionalized and leaving people in need without the support
and community they deserve.
Though essays like Julia Bascom’s “Dear ‘Autism Parents’” [5] initially
felt hostile, with statements like “If you do indeed, as you claim, want to
be allies, then I suggest you start acting like it,” when viewed through a
158 C. Greenburg and S. D. R. Rosa

neurodiversity lens, it is simply a statement of affirming autistic identity

and rights—and for my son, too. When I watched Mel Baggs’s video,
“In My Language” [6], and saw that Mel is multiply disabled in ways
mirroring my son yet could also describe that experience in writing, it
destroyed my unexamined assumptions about the boundaries between
disability and ability. And when the Autistic Self Advocacy Network
(www.autisticadvocacy.org) demands “nothing about us without us,” they
are taking their rightful seat at the head of the autism roundtable, rather
than trying to bar the concerns and questions of non-autistic parents like
me from those discussions entirely.
I also had to confront flaws in my own thinking as my understanding
of neurodiversity evolved. I fought against autism-vaccine disinformation
because such statements are provably false. But neurodiversity activists
like Emily Paige Ballou (chavisory.wordpress.com) helped me understand
that not only do vaccines “have nothing to do with autism,” but framing
autism as an “injury,” or even saying “don’t worry, vaccines don’t cause
autism” is still making my son’s neurology into something to be feared
rather than understood and accepted—and that is both stigmatizing and
counterproductive.
Some neurodiversity-informed approaches have been harder to sow,
due to widespread misinformation about autism and disability. We’re still
working on helping people understand that it doesn’t matter how many
people (and industries and lobbyists) support and promote applied behav-
ioral analysis as a “treatment” for autism, if the goal is to turn an autistic
child into a non-autistic one, because that’s an approach many adults who
experienced ABA as children describe as PTSD-inducing. Instead, we
need more people to understand and work with autistic children’s unique
set of intellectual, visual, sensory, auditory, communication, and motor
processing abilities.
Overall, I believe the team efforts behind TPGA have been successful.
We hear from people every day who are grateful that we include per-
spectives that reflect their own experiences, demonstrate why presuming
competence matters, further the shaking off of stigma, make them feel
less alone, and provide insights into their children, students, clients, or
even selves that they’d never considered before. And most of these efforts
wouldn’t be as useful as they are, if they weren’t neurodiversity-informed.
 12 Two Winding Parent Paths to Neurodiversity Advocacy 159

I will always be learning more about what neurodiversity means. I now

better understand the foundational drive of respecting and ensuring rights
for people of diverse neurologies, and reject my initial assumption that
neurodiversity advocates deny disability, but the process will always be a
journey. (And not always an easy one: that while neurodiversity advocates
are often the most delightful and compassionate people one will ever
meet, neurodivergence doesn’t protect autistic people from being capable
of flawed logic, bad choices, ignorance, and outright cruelty.) But I now
understand that neurodiversity is not only a fact of life but a litmus test:
I can’t trust people who don’t support neurodiversity, not when it comes
to autism best practices, or my son’s future.

Carol Greenburg: Advocacy Rooted

in a Neurodivergent Family Tree
Before I knew many autistic adults who knew they were autistic, before I
met any autistic bloggers, before TPGA existed and asked me to write a
piece for them, it was about the money for me. I had helped a friend to
get services for her child on the spectrum and realized I had a knack for
cutting through the layers of red-tape that cordoned children like my son
off from services to which they were legally entitled. I thought I could do
some good and get paid for it.
So I decided to become a non-attorney special education advocate, and
get paid for my work. Non-attorney advocates don’t, and shouldn’t charge
anywhere near as much as people who go through law school and pass
the bar, but even without a legal degree helping families properly prepare
for and effectively represent them at IEP meetings takes knowledge and
attention to detail. Processing that knowledge takes time and barrels of
energy, which I think should be reflected in a paycheck.
I see the option of paid work, of contributing to my household income,
as a part of adulthood I had never quite mastered. I was tired of the message
that getting paid consistently with real cash for my real expertise was not
a goal I was likely to reach. My first clue? Chronic under employment and
unemployment in my previous attempts at paid labor, the annoying sticky
160 C. Greenburg and S. D. R. Rosa

companion of so many autistics, so many women, and especially autistic

women like me.

Suddenly My World Made Sense

Despite my education and skills, I was fired from almost every job I held
in my twenties and into the first half of my thirties. I didn’t understand
why, until what I had suspected was confirmed by the autism spectrum
diagnosis I got when I was 44. The notion that I am autistic didn’t surprise
me at all. Autism doesn’t just run in my family, it gallops. My son was
diagnosed at 3 1/2. I called my Dad the day after we learned about my
son’s autism; back then Dad could still use a phone. Absurd as it now
seems to me, I struggled a bit, probably more with my own internalized
ableism than with any rational fear of his reaction to the question I wanted
to ask him: Did he think, as I did, that there was a reason for the peculiar
similarities between the three of us? To his eternal credit he didn’t laugh
at me, but to this day I maintain I could practically hear him roll his eyes
over the phone when he gave me a definitive yes.
My Dad never got a formal diagnosis, but even before he lost most of
his spoken language to a series of strokes, he has quietly carried an autistic
pride banner for all of the rest of our autistic family, living and dead. In
communications between the two of us, ever more halting and difficult
as they are to conduct, he has expressed our shared belief that we would
not trade our autistic reality for some artificial construct invented by non-
autistics whose brains and experiences differ from ours so much. I did and
do still check in with him periodically to make sure it’s OK that I’ve been
continually outing him as autistic and proud for over a decade. He used
to tell me that he felt if I could spread that message I should, for the sake
of all of us, as he dislikes how we are portrayed as having lives not worth
living. Nowadays, he gives me an elaborate flourish of his hand that says
to me “Carry on!”
My diagnosis took the edge off that shame and gave me some valuable
context: It was now clear how much my autistic brain shaped my autistic
cultural assumptions. Office politics were not only senseless, but actively
offensive, built as they were on a scaffold of lies and tacky dominance
 12 Two Winding Parent Paths to Neurodiversity Advocacy 161

performance art. I wouldn’t have participated in them even if I could

have. That was only one of many social trappings of standard workplaces
from which I hoped entrepreneurship would free me. The problem became
not so much what, as how: I knew I wanted to start my own company as
a non-attorney special education advocate. The problem was, how would
I attract clients?
I had written professionally before the Internet existed, so I had some
sense of what writing required, and now with the existence of blogs, I
had a ready-made platform. My blogging didn’t pay, but I thought my
writing might help establish my expertise for clients I hoped to attract. I
saw the most positive responses I got as contributing to good Karma if not
immediately to my piggy bank, and tried to keep faith in the notion that
getting my name out there would eventually yield some concrete results.
Paid or unpaid, advocacy by autistics for autistics is vital, but when I
started this work, I felt strongly that my brand of advocacy would be linked
to the economics of womanhood and autism. I was tired of lectures about
the beauty of voluntarism. Women’s work, autistics’ work seemed to result
in strikingly similar outcomes: enthusiastic praise that was supposed to
somehow compensate for the lack of financial parity. Service-for-service’s-
sake is a principal that can stretch only so far before it becomes a burden
bulging with the resentment of those serving.
However the eternal problem with a do-over in a new field still hovered
over my goal. It is difficult to begin a new work life without taking a few
steps backward, which in my case meant more volunteering in addition
to writing. I ended up creating a DIY apprenticeship to settle myself
into presenting myself as a professional. I started helping longtime friends
with their children’s IEP prep and meetings. In between helping individual
families, I wrote, spoke, designed and delivered workshops, almost always
for free. Sometimes, I had great experiences: my first clients, old friends
all, treated me with respect because that’s how friends act.
The treatment I got from people I didn’t know, the ones who wanted
me to do free workshops or write free articles: that was more uneven.
Although some of these strangers eventually became welcome, enduring
parts of my world, others I couldn’t escape fast enough.
One workshop organizer scolded me for using the word “Autistic” to
describe myself—and my own son. To her, I had no right to describe my
162 C. Greenburg and S. D. R. Rosa

own personhood in the terms of my choice. Workshop participants, mostly

non-autistic parents of autistic kids, often meant well, but did no better
than that organizer, and thought they were complimenting me when they
said I didn’t “seem autistic” like their and my own mostly non-speaking
kids (I speak pretty fluently, unless some upset robs me of language). I felt
that thanking them for their attempts to praise me violated my personal
policy of not accepting compliments at the expense of my people: It never
makes me happy to hear that I’m not like other autistics—or women, or
feminists, or Jews—anyone has met.
Then there were the editors, who asked for free articles, which they
wanted to rewrite to reflect their own usually non-autistic biases. I like my
own always-autistic biases better though, and except for minor edits for
clarity, I held firm to my belief in my ability to spout my own opinions
better than anyone else could spout them. I was getting discouraged. Then
a new blog called Thinking Person’s Autism asked me to submit a piece
and my world changed again.

A Chance Encounter. A Permanent Change

A month or two after I wrote that piece for TPGA, a chance encounter
became a permanent part of my life. It wasn’t a paying gig, but it has led
to many, and at least as importantly: I finally got to get used to the kind of
treatment I think all people deserve. At a panel at a BlogHer conference
about busting autism myths, I met the woman who came up with the topic
for the panel, Shannon Des Roches Rosa. She was there with Jennifer Byde
Myers, her co-founder of the new project TPGA. Shannon had an idea
that should seem pretty obvious to all of us now, but Simply Wasn’t Done
back then: She invited an Actual Autistic to join the panel.
As it turned out, the wonderful autistic advocate they originally invited
was unable to attend. I volunteered to pinch-hit last-minute. I met Shan-
non, Jen, and the other panelists ten minutes before we went on.
I’ll never forget the first thing Shannon said to me: She asked if I needed
help getting up to the podium. I was amazed by the thoughtfulness of
the offer. Like many autistics, I have trouble with proprioception, the
awareness of where my body is in space. Although I can use stairs without
 12 Two Winding Parent Paths to Neurodiversity Advocacy 163

assistance, and if I try hard enough to mask the effort, I can hide how
hard it is for me to just get around without falling, bumping into objects
and people, or knocking things over. But when I have a problem that
indicates my impairments, I’m used to people laughing at me, despite
my explanations—because I just don’t seem THAT autistic. So the only
logical conclusion is that I’m clumsy, or I’m not paying attention or—
as any autistic reading this has undoubtedly already predicted—I’m not
Trying Hard Enough. Even though I am trying as hard as I can, every
moment of every day of my life, even during the moments only I can see
and feel. Shannon got that instinctively.
Later that day, Jen offered to let me wait in her hotel room while she
grabbed something she needed for an upcoming presentation. I hesitated,
because I have experienced that wrath of those who have made insincere,
token offers that I accepted because I didn’t know some rule (hidden to
me) that I was supposed to demure. I decided to take a chance and explain
that she needed to be absolutely clear with me about whether her offer
was genuine, because I need spoken subtitles for social niceties. I realized
her offer was real when she actually thanked me! No stranger for whom
I had done a workshop or panel had ever thanked me for telling them
exactly what kind of accommodation I needed. Mostly they just seemed
annoyed.

TPGA: A Neurodiverse Ecosystem

A few months after meeting Shannon and Jen, I was honored by an invi-
tation to join the editorial team of TPGA. We pay our authors, but I
don’t get paid for my TPGA editorial work; none of the editors do. My
opinions carry the same weight as those of the non-autistic editors. I want
to emphasize that: The Same Weight. So if our audience likes what we
publish, I may play some part in our having published it. Conversely, if
they loathe what we publish, I bear as much responsibility for it as anyone
else on the editorial team.
My work with TPGA remains one of the great honors of my life. Staff
discussions and occasional disagreements may be blunt, but they are also
respectful. While I can’t define the totality of Neurodiversity even for
164 C. Greenburg and S. D. R. Rosa

myself, much less anyone else, I know spaces where I can see it. TPGA is
had always been one of those spaces for me.
I still do a lot of public speaking, often for money and/or at least
travel expenses, and I enjoy it. How I am introduced depends upon the
organization and audience. Some autism professionals and parents still feel
uncomfortable around adult autistics, perhaps they expect me to judge
their efforts harshly, so they soft-pedal my own autism and play up my
role as the parent of an autistic son.
When I speak publicly with my co-editors at TPGA, I think it is not
at all coincidental when whoever has invited us makes the greatest effort
to combine all of my roles in the autism community. Those are the times
when the word “self-advocate” pops up, and I do understand why, but it
makes me a little uncomfortable. It is a term many autistics embrace, but I
don’t find it entirely descriptive of what I do, professionally or personally.
Do I self-advocate and teach self-advocacy to my autistic son? Of course,
because self-advocacy means nothing more or less than insisting on one’s
full rights. In my view self-advocacy is not a job in and of itself, but an
expression of our dedication to living as we are. For people with disabilities
in particular, the world does not approve of us accepting ourselves as is.
With the death of some in my family, and other circumstances in the
lives of the other autistics whose light we can still see in this world, I’m
the only autistic left who uses spoken and written languages with any
fluency. Of course, I’m active in protecting my father’s and son’s rights,
and I am accustomed to but continually disgusted by the efforts of many
non-autistics to treat them as somehow lesser because they don’t express
themselves primarily with written or spoken language.
Like all loved ones my father and my son are sometimes sources of
frustration and sometimes sources of joy, but that’s a function of their
humanity, not their disability. I have never been and will never be the only
person in my family who has expressed agency in my own life, and my
allegiance to my autistic family members’ rights stands, no matter what.
Just I see myself as a full human being with all of my human rights intact
I ally with my autistic family members who have fewer words when they
get subpar treatment, because I am a daughter and mother of disabled
men who are equally, fully human.
 12 Two Winding Parent Paths to Neurodiversity Advocacy 165

That is where Neurodiversity starts to gel—at least for me. Neuro-

diversity in my world, is the unquestioned right for all, whatever their
neurological makeup, to express what they need or want. None of us get
what we need or want all of the time, and that’s OK. Getting everything
you request, or demand, is not the reality of anyone I know, no matter
how much privilege they have, whether they own up to it or not. I don’t
think any of us, of any neurostatus, should get every golden, silver, or
copper ring we reach for, but everyone should have stable, level ground
from which we can launch authentic discussions about what we owe and
what we deserve.

Conclusion
We wouldn’t know each other if it wasn’t for neurodiversity, and our indi-
vidual journeys in understanding and embracing what that means both
for ourselves and for our families. Now that our paths have crossed, we are
obligated to collaborate on sharing our ever-increasing knowledge with the
world. We also have the (often humbling) experience of hearing how our
work, especially with TPGA, is positively influencing others’ lives—autis-
tic people and their families, of course, yet also professionals, academics,
policy makers, and researchers. I hope we’ll continue to working together
for the foreseeable future, because opening people’s minds to why neurodi-
versity matters—both as a human rights concept and because individuals
deserve respect—is a worthy endeavor.

References
1. Rosa, S. D., Myers, J. B., Ditz, L., Willingham, E., & Greenburg, C. (2011).
Thinking person’s guide to autism. Redwood City, CA: Deadwood City Pub-
lishing.
2. Rosa, S. (2003, September 12). Look! Ten apples up on top! I am so good I will
not stop! (Web log post). Retrieved from http://www.squidalicious.com/2003/
09/look-ten-apples-up-on-top-i-am-so-good.html.
166 C. Greenburg and S. D. R. Rosa

3. Silberman, S. (2015). Neurotribes: The legacy of autism and the future of neu-
rodiversity. New York: Penguin.
4. Stanton, M. (2010, June 17). What is neurodiversity? (Web log post). Retrieved
from http://www.thinkingautismguide.com/2010/06/what-is-neurodiversity.
html.
5. Bascom, J. (2011, August 23). Dear “autism parents” (Web log post). Retrieved
from https://juststimming.wordpress.com/2011/08/23/dear-autism-parents.
6. Baggs, M. (2007, January 14). In my language (Video file). Retrieved from
https://www.youtube.com/watch?v=JnylM1hI2jc.

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the permitted use, you will need to obtain permission directly from the copyright
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 13
Lobbying Autism’s Diagnostic Revision
in the DSM-5
Steven K. Kapp and Ari Ne’eman

Defining the boundaries of autism has always been a complex task, shaped
by a wide variety of scientific, social, political, and economic factors. Those
boundaries shape the lives of autistic people, influencing not only who gets
diagnosed but often providing significant and important context to clinical
decisions about service provision and “treatment” along with setting the
stage for lifelong diagnostic and service disparities on the basis of gender,
race, class, and age.

S. K. Kapp (B)
College of Social Sciences and International Studies, University of Exeter,
Exeter, UK
e-mail: steven.kapp@port.ac.uk
Department of Psychology, University of Portsmouth, Portsmouth, UK
A. Ne’eman
Senior Research Associate, Harvard Law School Project on Disability,
Cambridge, MA, USA

© The Author(s) 2020 167

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_13
168 S. K. Kapp and A. Ne’eman

Because autistic people are shaped by the diagnostic process, one of the
Autistic Self Advocacy Network’s priorities—as the leading organization
run by and for autistic people—was to shape that process in return. We
sought to do this with a variety of goals in mind: to address existing diag-
nostic disparities, improve access to service provision where diagnostic
distinctions interfered, and to prevent a loss in access to legal protections,
social legitimacy, and service provision by the narrowing of the diagno-
sis. While the Neurodevelopmental Disorders Workgroup charged with
revising the autism diagnosis in the Diagnostic and Statistical Manual
of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Asso-
ciation [1]) consisted of researchers who conducted analyses and whose
decisions received reviews from academic scholars [2], the process was still
a political one, subject to efforts to influence the outcome. As a repre-
sentative acknowledged, “This is not science – this is a committee” [3].
Furthermore, we maintain that the scientific and research processes are
framed and mediated by larger social and political ones, and thus that
dedicated advocacy and lobbying could influence the resulting diagnosis.
In this, we were absolutely correct.
ASAN’s advocacy work regarding the DSM-5 was led by the two
authors, Ari Ne’eman (ASAN’s co-founder and then President) and Dr.
Steven K. Kapp (then a doctoral student at the University of California,
Los Angeles and ASAN chapter Co-Director). While the organization was
pursuing political and policy goals, we sought to ensure that ASAN’s advo-
cacy would be well-grounded in the research literature so as to maximize
the likelihood of success and ensure the organization’s credibility.
Ari led the lobbying effort and served as the primary point of contact
with members of the DSM-5 Neurodevelopmental Disorders Workgroup.
He also served as the primary expert on law and policy considerations in
service provision. Steven led the research expertise side, serving as ASAN’s
technical expert on the research literature, providing comprehensive infor-
mation on the existing autism research literature, and ensuring that the
organization was capable of responding rapidly to questions or concerns
raised by Workgroup members regarding the research literature.
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 169

Larger Context of Diagnostic Process

While the DSM had been revised previously, the current diagnostic process
took on outsized public attention for a variety of reasons. Some of this was
due to the simple fact that during the development of the DSM-IV [4],
an organized community of autistic adults did not yet exist in significant
numbers. The DSM-5 was the newly organized autistic community’s first
opportunity to weigh in on the criteria that governed who the medical
community considered autistic.
But the DSM-5 process attracted additional attention for another rea-
son: many in the autistic and autism communities were gravely concerned
by rhetoric that autism was “over-diagnosed”. Though the expansion of
the diagnostic criteria in the DSM-IV had given large numbers of people
access to legal protections, service provision, and a diagnosis and com-
munal identity that helped them make sense of lifelong experiences of
social isolation, odd interests, and other common autistic experiences, it
had also sparked a backlash among some clinicians and members of the
general public. Early media reports about the DSM-5 process suggested
potential intent to narrow the diagnostic criteria [5]. These reports noted
that the pathways to an autism spectrum diagnosis would shrink from
2027 to 11 possible “symptom” combinations [6] and that the committee
had laid out an official goal to avoid false positives [5]. Further reports that
the proposal would narrow the criteria significantly [7] sparked anxiety and
deep worry among many. While the Workgroup did have another goal of
improving identification in women and girls, racial and ethnic minorities,
and adults—admitting the DSM-IV worked best for five-to-eight-year-
old white boys [8]—further reports that the proposal would narrow the
criteria significantly [7] sparked anxiety and deep worry among many that
the proposal would leave many without access to the diagnosis who might
benefit from it.
The committee’s early proposal to combine the DSM-IV’s main three
autism diagnosis, Autistic Disorder, Asperger’s Syndrome, and PDD-
NOS, into a single unified autism diagnosis exacerbated these fears
(though it was not the origin of them, e.g. Giles [9]). Many autistic people
opposed the integration of the Asperger’s diagnosis in particular into the
larger autism spectrum.
170 S. K. Kapp and A. Ne’eman

However, this proposal was not intended as a measure to narrow the

scope of the autism spectrum. Instead, it was rooted in significant research
and clinical findings that the three autism diagnoses were applied inconsis-
tently depending on the age and background of the person being diagnosed
and the physician conducting the diagnosis [10]. Many individuals would
receive multiple autism diagnoses across their lifespan, reflecting the fact
that the three diagnoses had come to be used as a proxy for quality of
outcome rather than being reflective of different phenotypes of autism.
To quote one early commentary by the Neurodevelopmental Disorders
Workgroup, “A single spectrum disorder [i.e., folding in Asperger Disor-
der and PDD-NOS] is a better reflection of the state of knowledge about
pathology and clinical presentation; previously, the criteria were equivalent
to trying to “cleave meatloaf at the joints” [11].
The proposal to unite the autism diagnoses paradoxically divided the
autistic community, with individuals diagnosed with, and organizations
based on, Asperger’s leading the opposition. Michael John Carley, execu-
tive director of the Global and Regional Asperger Syndrome Partnership
(GRASP, then led by individuals with the Asperger’s diagnosis), repre-
sented the sense of superiority many of these critics felt over autistic peo-
ple with higher support needs. “I personally am probably going to have
a very hard time calling myself autistic,” said Carley in an interview with
National Public Radio, comparing the cultural perception of Asperger’s as
a diagnosis perceived as associated with major historical figures, like Edi-
son and Einstein, to “somebody who might have to wear adult diapers and
maybe a head-restraining device. This is very hard for us to swallow,” [12].
While Carley [13] couched GRASP’s leadership of the opposition to the
DSM-5 in terms of concerns about diagnostic narrowing, he thus initially
voiced his personal discomfort with the removal of a separate Asperger’s
diagnosis based on cultural identity. ASAN did not share this worldview.
While we recognized that “autism” carried with it more stigmatized conno-
tations than “Asperger’s”, we believed that such stigma could be changed.
More importantly, there was no valid reason why it should be concen-
trated toward only one part of the autism spectrum until such time as that
change could be accomplished. Though both Ari and Steven possessed
Asperger’s diagnoses, it was our belief that the best way to address stigma
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 171

was to confront it across the spectrum. Why did we deserve protection

that other autistic people did not receive?
This was both reflective of our commitment to “cross-spectrum sol-
idarity” and the essentially arbitrary process by which one individual
might receive a particular diagnosis while another similar individual might
receive another. Though “Aspie Supremacism” had been a longstanding
problem in certain circles of the autistic community [14], ASAN had
always insisted on a cross-spectrum perspective and consisted of a leader-
ship and membership drawn from individuals who had received all three
of the diagnoses (as well as some who had been unable to access a diagnosis
due to various disparities).
We also believed that the three separate diagnoses contributed to service
eligibility gaps, where laws, regulations, and policies by payers provided for
eligibility for those with one diagnosis but not for others with comparable
levels of impairment and need. In addition to their lack of clinical and
research validity, ASAN had documented numerous instances where the
three different diagnoses were used to limit access to services.
But concerns remained that, if the DSM-5 was implemented in an
insufficiently precise fashion, some would be pushed out of the diagnosis.
Early research on DSM-5 draft proposals suggested that the revision might
lead to a narrowing in the availability of a diagnosis, pointing to early
estimates that predicted a severe consolidation of as much as 54% overall
(100% for those with Asperger’s diagnoses in their sample; [15]). Asperger’s
had been crucial to the broadening of the eligibility for an autism diagnosis
when the DSM-IV had come out, and many who had gained access to
diagnostic legitimacy, legal protections and service provision feared their
loss [9]. While ASAN supported the shift to a single unified diagnosis, we
shared those concerns and engaged in advocacy in part to protect members
of our community against the harms associated with the loss of a diagnosis
by advocating for a broad formulation of a unified diagnostic criteria.
ASAN also sought to use the DSM-5 process to address other equity
concerns, specifically race, gender, age, class, and geographic disparities
in access to diagnosis. Significant racial disparities in access to diagnosis
and service provision had been documented, with African-American and
Hispanic children less likely to receive a diagnosis and, among those that
172 S. K. Kapp and A. Ne’eman

did, the diagnosis typically came later in life and for those individuals with
more “severe”—obvious—autistic traits [16].
Similar gaps existed with respect to gender, though these disparities were
often constructed as real biological facts rather than disparities in access
to diagnosis. However, the autistic community had long maintained that,
while the actual rate of autistic men and boys to autistic women and girls
could not be definitively known, a significant percentage of that gap was
attributable to gender bias and the resulting disparities. A growing body of
research literature was coming to agree with us [16]. Furthermore, ASAN
maintained that the DSM-IV criteria often made it difficult for autistic
adults to receive a diagnosis, since we tended to develop various “masking”
or “passing” skills as we grew up that hid the autistic traits we had had in
childhood, even as the effort associated with passing still created cognitive
demands and quality of life challenges not experienced by non-autistic
persons [16].
Finally, we were deeply worried about proposals to write into the DSM-
5 criteria for “recovery”, reflective of a small number of studies that claimed
to show autistic children losing their diagnosis in adulthood or adoles-
cence. ASAN was skeptical of these findings, as a number of our members
had been deemed “recovered” in childhood only to be re-diagnosed or
find the autism diagnosis of continued relevance to them in adulthood.
Even within the research literature supporting recovery, the vast majority
who “lose” an autism diagnosis had it replaced with another diagnosis and
continued to face significant challenges associated with the autism spec-
trum, suggesting that they were in fact simply learning how to “pass” and
develop coping skills [17, 18]. ASAN was concerned that writing “recov-
ery” parameters into the DSM-5 autism criteria would result in individuals
losing their diagnosis and resulting access to services, legal protections, and
communal identity when they develop meaningful coping mechanisms.
As a result, we advocated for the DSM-5 workgroup to avoid “recov-
ery” criteria and to write into the DSM-5 autism diagnosis that indi-
viduals could be diagnosed based on present or past manifestations of
autistic traits. Specifically, we sought to codify that learned behavior or
other “mitigating measures” would not be held against an individual in
seeking to access or retain a diagnosis. In this, we were borrowing a for-
mulation that had been very successful in the Americans with Disabilities
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 173

Act Amendments Act of 2008, legislation ASAN had successfully advo-

cated for ensuring that individuals would not lose the legal protections of
the ADA if they successfully used “mitigating measures” to manage their
disability.

Strategy and Tactics

In order to advance the priorities and protect against the concerns pre-
viously discussed, ASAN pursued a combination of social, political, and
scientific strategies to “lobby” the DSM-5 process. Ultimately, our work
was rooted in a simple reality, often obscured given the inscrutable nature
of the process of making the DSM: it was written by people, and people
can be communicated with, influenced, and convinced, even when they
are autism researchers.
Early on, we made a judgment call that the autistic community, though
possessed with an (in our opinion) indisputable moral claim to be rep-
resented in the DSM-5 process on an equal basis, lacked any material
leverage with which to pressure the APA to include us on a formal basis
or to accede to demands regarding modifications to the criteria. By this
time, ASAN leadership had become experienced in running grassroots
campaigns designed to secure autistic community priorities, even against
opposition. We regularly conducted what would be referred to as a “pres-
sure points” analysis in the leadership training we would later run for
autistic college student organizers: identifying the levers through which
advocacy could influence a target into complying with the autistic com-
munity’s demands or making concessions toward those ends.
In the case of the APA, no material “pressure points” presented them-
selves. As such, even though ASAN was perceived as a more “militant”
organization vis a vis the autism research and clinical worlds, Ari made a
decision to operate a campaign based primarily on personality, persuasion,
and evidence from the research literature. Our philosophy was always (and
remains) using whatever tool is most effective for a particular job. Thus,
a decision was made to cultivate relationships with individual workgroup
members and the workgroup as a whole with the goal of convincing them
174 S. K. Kapp and A. Ne’eman

to advocate for our priorities and to provide advance copies of working

drafts.
While Ari and Steven were the organization’s primary leads on DSM-5
advocacy, others played critical roles. Scott Robertson, ASAN’s co-founder
and then a member of ASAN’s board and a PhD candidate, also assisted
the production of early documents sent to the workgroup and participated
in early phone calls, as did Paula Durbin-Westby, an autistic activist on
the board of ASAN and later to join the organization’s staff. Zoe Gross,
then an intern with ASAN and later to become the organization’s Director
of Operations, drafted critical background material provided to the work-
group on the challenges facing autistic women and autistic people of color
in accessing a diagnosis and the resulting disparities these groups faced. She
also provided illustrative examples regarding circumstances under which
individuals might fall out of the boundaries of early drafts of the criteria,
while still needing the support and recognition that an autism diagnosis
could provide. Amanda Vivian, an autistic writer and creator of the Autis-
tic Passing Project (http://autisticpassing.tumblr.com/), provided critical
feedback on early drafts of ASAN feedback, among others.
While Steven provided research knowledge and scientific analysis to
ASAN’s work on influencing the DSM-5 continuously throughout the
organization’s advocacy, this intensified after he signed a contract in 2011.
He led the writing of most memos and authored several independently.
Topics included documenting the social abilities and social interest and
empathy of autistic people, motor and movement issues, differential diag-
nosis, gender and race disparities, addressing potential misunderstandings
of autistic activists and the neurodiversity movement, diagnostic practice,
considerations for why the revision might “miss” autistic people, and so on.
For specific and sensitive matters, he sometimes communicated directly
with Members B or C (see below).

Communications with the Workgroup

In 2009, ASAN made contact with the DSM-5 Workgroup through one of
its members, hereby referred to as Member A, whom Ari had corresponded
with earlier regarding early intervention methodology. The two had earlier
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 175

found common ground over a shared critique of the excess rigidity of

behaviorist interventions. Separately, Ari connected with the workgroup
Chair at a meeting of the Interagency Autism Coordinating Committee
(IACC) and, after Member A provided the Chair and Workgroup with
a favorable impression of ASAN, Ari was invited to provide written and
verbal feedback to the workgroup at several teleconferences and semi-
annual in-person meetings in Washington DC hotel rooms. Ari also used
the IACC as a vehicle for highlighting autistic community priorities and
concerns regarding the DSM-5 during his two years as a public member of
the committee (for more details on this from the perspective of an external
observer at the IACC meetings, see Moore, pp. 169–198 [19]).
After an individual meeting with the Chair and phone calls with her
and Member A, Ari met with the workgroup in person on the morning of
April 8, 2010 (a meeting for which Steven provided significant research
support). At this meeting, Ari stressed the importance of acknowledging
“mitigating measures” and ensuring that individuals would not lose access
to a diagnosis by virtue of their having learnt how to “pass” as non-autistic,
a serious concern for many autistic adolescents and adults.
In addition, Ari stressed ASAN’s opposition and concern regarding the
severity scale, both in general and in its current formulation. ASAN was
(and remains) worried that the introduction of a severity scale would
be used by clinicians and service providers to set inappropriate “service
goals” focusing on making autistic children and adults look and act “less
autistic”. We were particularly concerned by the fact that, at the time, drafts
of the severity scale included references to “fixated interests”, suggesting
that clinicians and other professionals should try and redirect autistic
children away from their passionate special interests, and to “repetitive
motor movements”, which many autistic people enjoy and which help us
to self-regulate (and which we reclaim as stimming ). Ari also indicated
ASAN’s concern with the draft criteria’s emphasis on “social reciprocity”,
a vague concept whose most common clinical measures ASAN considered
to be flawed.
This meeting was well-received by the workgroup, leading to a growing
correspondence between ASAN and workgroup members both individu-
ally and collectively. ASAN soon made contact with Member B and Mem-
ber C, who along with the Chair and Member A corresponded with Ari
176 S. K. Kapp and A. Ne’eman

and Steven to help inform the workgroup’s deliberations. These Members

did not necessarily agree with all of ASAN’s recommendations—indeed,
it was common for us to work with members on one set of priorities (i.e.:
opposition to the severity scale, maintaining a sufficiently broad diagnosis,
etc.) who disagreed with us on another set of priorities (i.e.: opposition to
recovery criteria, etc.).
This made the establishment of relationships with as many members
of the workgroup as possible a high priority. Ari, Steven, and others went
to conferences in the US, Canada, and the UK—the home countries of
workgroup members—where we knew that members would be present in
order to make contact, establish a social relationship, and parlay that into
communicating our recommendations and collecting intelligence on the
current status of the draft criteria. At times, this resulted in drafts being
provided to our team from individual workgroup members, to which
ASAN provided specific and substantive comments (with academic ref-
erences as appropriate). Other times, it simply resulted in the collection
of useful observations on the attitudes of individual workgroup members
toward our recommendations and their recollections of internal delibera-
tions within the workgroup.
ASAN continued to correspond and meet with the DSM-5 workgroup
members, though usually we were not invited to participate directly in
workgroup calls and meetings, with a few exceptions. For example, ahead
of the November 2011 meeting, ASAN developed a private memo making
recommendations on the latest draft of the criteria, in particular urging
a revision of the social communication domain from requiring 3 of 3
sub-criteria to qualify for a diagnosis to only requiring 2 of 3 criteria. (We
also proposed an alternative recommendation of adding a fourth regarding
language and speech issues, to require 3 of 4). This recommendation was
not accepted, though others reflected in the memo were.
We also pushed for acknowledgment of motor movement issues and
for strengthening of the language acknowledging that different contexts
informed whether or not autistic traits would be visible. At the time, this
language stated only that:

symptoms must be present in the early developmental period (but may not
become fully manifest until social demands exceed limited capacities).
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 177

We recommended that the language be revised to read as follows:

Symptoms must be present in early childhood (but may not become fully
manifest until social demands exceed limited capacities, or because of com-
pensatory or coping mechanisms developed over time).

The final criteria closely followed this formulation, reading:

Symptoms must be present in early childhood (but may not become fully
manifest until social demands exceed limited capacities, or may be masked
by learned strategies in later life).

The memo also urged the inclusion of greater material on adults, women
and girls, racial and cultural minorities, socioeconomic status and other
factors that influenced disparities in access to diagnosis, in the accom-
panying text, and provided the workgroup with illustrative examples for
each. Finally, we urged the elimination of the severity scale and provided
guidance for the accompanying text on differential diagnosis.
On the sidelines of the meeting, Ari met with Member B and Member
C, communicating with each individually during breaks and the lunch
period. This correspondence from Ari to Steven and Zoe, redacted to
avoid disclosing the names of the workgroup members, provides some
insight into the nature of these interactions:

A few highlights, while they’re fresh. Needless to say, none of this is for
repetition or forwarding under any circumstances:
– Met with [Member B] and [Member C] for 20 min., they report our
document was well received by the Committee. I snuck a peek into their
folders when I got there: every member of the ND Work Group had
received a copy of our memo. [Member B]’s looked like it had been
leafed through decently and they say they made use of it throughout the
morning. Good job, team!:) Your hard work was not for naught.
– They backed our severity scale concerns, said the dsm v apa folks requir-
ing it of everyone, said they’d be willing to put language in accom-
panying text clarifying it not intended as proxy of treatment goals
and outcomes, shouldn’t be used as measure of service provision need.
Pushed a bit more, they said they were open to dropping fixated interests
178 S. K. Kapp and A. Ne’eman

(and maybe rrbs?) from the scale and using a flexibility/ef measure along
with social comm. instead. I pointed out that this might lead to more
work occurring around self regulation.
– Focused mostly on accompanying text and severity, as they clarified that
while the criteria MIGHT get opened up later, they’ve been instructed
to leave it for now until field trial data comes back;
– Some willingness to elaborate on motor and language issues in accompa-
nying text, said it was already there to some degree, they might expand
on it;
– Our first discussion focused on how to capture adults in diagnosis who
were hard to ID. They asked two starting questions: “what services did
this population need and how would we suggest they guide a junior clin-
ician who hasn’t seen asd before as to how to identify these individuals?”
Strongly emphasized that even those who don’t require traditional types
of service provision might still benefit from diagnosis to access ADA
protections, reasonable accommodation and support groups. ([Member
C] had tried to raise concern on “political motivations to access diagno-
sis” but this helped mitigate that concern or at least convince [Member
C] that wasn’t our motivation). Also pointed out that accurate diagnosis
useful for clinicians providing treatment for co-occuring mh conditions
like anxiety and depression.
We had a discussion on coping mechanisms (they referred to this as
“scaffolding” and “masking“) and the risk of individuals losing their
diagnosis or not getting one in the first place. This was where we had more
disagreement. [Member C] feels strongly that there are large numbers of
people seeking an asd diagnosis who “just don’t meet the criteria” as a
way of escaping “legal, workplace or marital” problems. We pushed back
here.
Discussed mechanisms of addressing masking in diagnostic process, I
suggested greater weight to self report, [Member C] disagreed, citing
again the supposed fakers trying to get asd diagnosis that doesn’t fit.
Respectfully disagreed, then reinforced that “do no harm” principle
means that its better we capture a few folks that don’t fit than risk pushing
off folks who do. Not much agreement there.
Moved onto other potential ways for assessing what we both referred to
as “cognitive impacts“ for those who effectively “mask“ behavioral traits.
They were very interested in using anxiety and depression as possible
proxies to catch those who are experiencing cognitive impacts due to
masking. Pushed for inclusion in accompanying text.
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 179

– Steven, [Member C] disagrees strongly with your assessment re women

and girls having distinct traits, feels there are “hundreds of studies that
disagree with the few you cited”. I pushed back here too, stated that
while lit for bio based differences may be unclear, there is strong lit often
outside of asd field for differences in manifestations between boys and
girls due to upbringing, social context, etc. Pushed for acknowledgement
in accompanying text.
– They agreed that a “subclinical” category on the severity scale was, on fur-
ther consideration, a bad idea. They said it was intended to capture those
who felt, “they had a condition, not a disorder” ([Member C] again). I
stated that this is likely a corruption of Neurodiversity philosophy, these
folks were trying to say “disability, not disease”. We agreed - particularly
[Member B] who was consistently more friendly - that there was real
risk that a subclinical category could push folks “off the spectrum”. I
pointed out that it is unlikely those with a “subclinical severity” could
access ADA and 504 protections.
– Whenever possible, I tried to move conversation to legal/policy impacts
of their decisions, they don’t understand law & policy and know we do,
thus they’re more likely to hear from us on those points. Made it very
explicit throughout we had no intention of making “political/identity”
arguments, only “practical/research and policy driven ones”. They appre-
ciated that.”

As reflected in the above report, one of many written by Ari and Steven
in their respective interactions with the workgroup or its individual mem-
bers, ASAN had a complex relationship with the individuals we com-
municated with on the workgroup, some of whom shared most of our
views while others agreed with us on only a few things. Some possessed
views that we found extremely objectionable, requiring careful calibra-
tion in our communications with them to preserve the relationship while
pushing back on viewpoints that had the potential to deeply harm our
community if they were incorporated into the DSM-5 criteria.
Because of the power imbalance between the APA and the autistic com-
munity, and the tremendous impact that the DSM-5 could have on our
community, we felt that an “inside game” was the most effective way
we could promote change, thus our willingness to de-emphasize “politi-
cal/identity” arguments. There is, of course, a certain irony here, in that
180 S. K. Kapp and A. Ne’eman

the “legal/policy impacts” of the DSM-5 are unquestionably political, but

as those with decision-making authority in the process tended to present
themselves as engaged in an apolitical endeavor, we adjusted our rhetoric
accordingly to maximize effectiveness.
On January 31, 2012, ASAN issued a joint statement on the DSM-5
with the Autism Society of America, a parent-led group that we had an
uneasy détente with, urging the “DSM-5 Neurodevelopmental Disorders
Working Group to interpret the definition of autism spectrum disorder
broadly, so as to ensure that all of those who can benefit from an ASD diag-
nosis have the ability to do so” [20]. This was made possible both by early
efforts to build up a relationship between ASAN and what we then per-
ceived as more moderate elements within the autism parent movement
and the fact that concerns over the DSM-5 extended across traditional
dividing lines of self-advocate and parent perspectives in autism. These
concerns grew in response to a headlined New York Times report pub-
lished days earlier about a preliminary study by the former chair of the
DSM-IV workgroup, which warned that about 75% of people diagnosed
with Asperger’s and 85% of people diagnosed with PDD-NOS would no
longer be eligible for an autism spectrum diagnosis [7]. While the Autism
Society was a larger and better-funded organization, they had not built
up significant internal technical expertise on the legal, policy, or research
questions at issue within the DSM-5, requiring them to rely on our exper-
tise as their concerns grew.
In June 2012, Ari and Steven released two policy briefs, timed to coin-
cide with the final public comment period on the DSM-5, for which
ASAN issued talking points to our grassroots in May [21]. The first, enti-
tled “What Are the Stakes? An Analysis of the Impact of the DSM-5 Draft
Autism Criteria on Law, Policy and Service Provision” provided compre-
hensive analysis of the implications of DSM-5 proposals on legal, policy,
and service-provision systems. In this policy brief, we presented distinc-
tive analysis that in special education, non-discrimination protections and
rights to reasonable accommodations, developmental disability services,
and income support, a shift to a single unified diagnosis would likely
increase access to publicly funded service provision [22]. We also called
attention to the fact that the proposed non-autism diagnosis of Social
Communication Disorder, created by the workgroup in part to house
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 181

those who might be pushed off the autism spectrum, would likely be less
useful in assisting individuals to gain access to services [22]. Later, a Work-
group member cited both policy briefs, referring to this first one as one of
only three papers “of major importance” published on the then-pending
criteria [23].
The second policy brief, entitled “ASD in DSM-5: What the Research
Shows and Recommendations for Change” provided an academic evi-
dence base for our concerns and specified our recommendations. The pol-
icy brief analyzed the draft criteria’s likely impact on under-represented
groups, placing particular emphasis on adults, women and girls, and racial
and ethnic minority groups, and made another case for acknowledging
motor/movement difficulties within the criteria. We also made several
technical edits, and recommendations to address concerns of the revi-
sion pushing individuals off the autism spectrum (particularly due to the
uniquely stringent social communication requirement). For example, we
recommended attaching the Social Communication Disorder diagnosis
to the autism spectrum, “possibly by renaming it as ASD-Not Elsewhere
Classified or ASD-Social Communication subtype”, increasing its utility
as a means of accessing services. The policy brief was deeply grounded
in the research literature, with 216 different citations of a wide array of
peer-reviewed autism research studies [16]. A Workgroup member cited
it within a study applying the DSM-5 criteria to adults, agreeing based
on their own research that the minimum requirements for meeting crite-
ria could be relaxed to correctly identify more people as autistic without
significantly adding false positives [24].
Our final engagement with the WorkGroup took place at an in-person
meeting in late 2012, when Ari was invited to attend the last meeting of
the DSM-5 Neurodevelopmental Disorders WorkGroup before the crite-
ria were finalized. There, he reiterated our concerns regarding sensitivity
and made a final impassioned plea to consider loosening the social com-
munication domain or linking Social Communication Disorder to the
spectrum. Michael John Carley of GRASP also received an opportunity
to comment via phone, reiterating GRASP’s opposition to the loss of the
separate Asperger’s diagnosis. Though we did not succeed in achieving all
of our goals, we nonetheless substantially influenced the final diagnostic
criteria and the accompanying text.
182 S. K. Kapp and A. Ne’eman

Outcomes and Implications

ASAN’s effort to lobby the DSM-5 is historically significant in that it
represents the first successful effort of the autistic community—and as
far as we are aware, any disability community—to successfully influence
the modification of their own diagnostic criteria. While communities have
successfully advocated to eliminate a diagnosis from the DSM (i.e.: homo-
sexuality) or to incorporate one, we are aware of no prior example of
successful advocacy to refine and improve diagnostic criteria from the
community subject to it.
Having said that, we were only partially successful at achieving our
advocacy objectives, owing in large part to the lack of any formal recogni-
tion of the value of autistic input in the development of the criteria earlier
in the process. While the Neurodevelopmental Disorders Workgroup ulti-
mately chose to acknowledge Ari as a formal advisor to the DSM-5, it did
so only after the criteria had been finalized. Even then, they did not inform
us ahead of the fact that this was planned. (Had they done so we would
have pushed to formally acknowledge Steven’s role as well.) Nevertheless,
the Workgroup Chair singled ASAN out for praise before international
researchers [25], as did another member before the autism community,
thanking us for our “steadfastness in tracking diagnostic criteria”, which
he said had been “extraordinarily helpful” [26].
And yet, the vast majority of workgroup meetings took place without
autistic input, with only a small number of direct contacts between ASAN
personnel and the workgroup as a whole (as distinct from the successful
cultivation of some individual members). Autistic input in the DSM-5
ultimately took the form of an intelligence operation, requiring the licit
and illicit cultivation of assets to collect partial information on poten-
tial revisions and inform formal communications regarding requested
changes. It would have been far preferable for the autistic community
to have received a direct and acknowledged seat at the table.
Perhaps because of this lack of formal recognition, only some of ASAN’s
goals were accepted into the DSM-5. The unique diagnostic needs of
adults (including that allowing self-report may strengthen the assessment
process, particularly for those who lack relatives with access to their clinical
history), women and girls, and racial and ethnic minority groups were
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 183

incorporated into the accompanying text, though not in as much detail

as we had pushed for.
No “recovery” criteria were incorporated into the diagnosis, and the
severity scale includes no reference to “subclinical” autism, a category that
would have made it substantially harder for those included within it to
access legal protections and service provision. Both are likely the result of
our efforts. In addition, modifications were made to the severity scale that
mitigated its potential harms, though it was still incorporated against our
recommendation and even the Workgroup’s objection [26].
The APA required a severity scale as part of all diagnoses in the DSM-5,
yet ASAN’s influence led to several notable concessions regarding it and
related text. The Workgroup reframed the scale as about need for support
because individuals might function well because of support and we did
not want that support taken away. As Workgroup Chair Sue said, “I think
the example that was given to us [by Ari], if you need a crutch to be able
to walk, but you walk perfectly fine with that crutch, you don’t want to,
then, say you don’t need that crutch anymore” (p. 198) [19]. Similarly,
after rejecting our call to eliminate the scale altogether due to APA’s insis-
tence, the Workgroup adopted ASAN’s backup recommendation to try
to defang the scale by prohibiting its use for services: the accompanying
text to the DSM-5 states that “the descriptive severity categories should
not be used to determine eligibility for and provision of services” and
that “these can only be developed at an individual level and through dis-
cussion of personal priorities and targets” (p. 51) [1]. Furthermore, the
emphasis on inflexibility or executive functioning in, and removal of “fix-
ated interests” from, the restrictive and repetitive behaviors domain of the
scale, result from ASAN’s involvement. In parallel, the accompanying text
states, “Special interests may be a source of pleasure and motivation and
provide avenues for education and employment” (p. 54) [1].
In other respects too, the final text reflected ASAN’s argument that
autistic people’s manifestations of their autism and functioning vary too
much to be applied systematically to service provision and clinical practice.
The main text’s clarification that the examples given “are illustrative, not
exhaustive” closely followed ASAN’s recommendation [16]. The Work-
group adopted our recommendation to loosen the requirement for social
communication deficits “across contexts” to “in multiple contexts” in the
184 S. K. Kapp and A. Ne’eman

main text, and limited the emphasis on relationship deficits to those with
peers. Similarly, it noted the context-dependent nature of autistic peo-
ple’s functioning multiple times in the accompanying text. Through our
comments on confidential drafts of the diagnostic text, ASAN successfully
encouraged language recommending that multiple sources of information
be used together in assessment to identify behaviors that do not always
present clinically, such as direct observation and interaction, interview on
history, and other reports, which can dramatically increase the likelihood
of identifying autism [27, 28]. As concessions to our input, the Work-
group added language noting uneven skills and a common gap between
IQ and lower adaptive behavior—which challenges the notion of “high-
functioning” autism. It likewise added advice that autistics with limited
language may show strengths on nonverbal, untimed cognitive tests—
which challenges “low-functioning” or “severe” autism tropes.
Perhaps most importantly, the inclusion of ASAN’s requested language
allowing diagnosis “currently or by history” as well as acknowledging that
“symptoms…may be masked by learned strategies in later life” (described
further as effortful and taxing in the accompanying text) offers meaning-
ful opportunities for autistic adults to be diagnosed at greater rates than
they have been previously. The inclusion of this language likely mitigated
some of the anticipated narrowing of the diagnosis and opened up oppor-
tunities to address diagnostic disparities, especially on the basis of age.
Other quieter influences more literally ensured access to diagnosis, such
as retaining the ability to diagnose OCD alongside autism (we provided
ample studies differentiating them).
Nonetheless, evidence does suggest that some narrowing did take place.
Studies applied prospectively that compare DSM-IV with DSM-5 criteria
reported that the latest revision narrowed eligibility for an autism spectrum
diagnosis by between 4% [29] and more than 10% among children, with
higher proportions missed for children with previous Asperger’s (20%)
and especially PDD-NOS (75%) diagnoses [30]. The DSM-5 particularly
missed girls, older children, and children with subtler autistic behaviors
[30]. Still, preliminary evidence does suggest DSM-5 increases access to
services (e.g. in special education) for those diagnosed [29], and likely the
revision would have missed many more people were it not for ASAN’s
efforts.
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 185

Had our recommendation to require only two of three criteria in the

social communication domain been accepted, this narrowing would likely
not have taken place, or would have not taken place to the same degree.
The DSM-5 will likely “miss” more people as individuals increasingly get
assessed for the autism spectrum for the first time. Those who already had a
diagnosis have a limited amount of protection, as the Workgroup ceded to
pressure by seeking to soften the transition to the new system through the
following language: “Individuals with a well-established DSM-IV diag-
nosis of autistic disorder, Asperger’s disorder, or pervasive developmental
disorder not otherwise specified should be given the diagnosis of autism
spectrum disorder” (p. 51) [1].
Emerging evidence on the implementation of DSM-5 confirms our
concern about the severity scale. It is our experience that when categories
of “severity” are provided they inevitably are used as mechanisms for ascer-
taining service eligibility or service/treatment goals. Indeed, the National
Insurance Disability Scheme in Australia, enacted since the completion of
the DSM-5, interprets the lowest support level (“Requiring support”) as
usually disqualifying autistic people from eligibility for services (https://
www.ndis.gov.au/). Fortunately, academic studies suggest the “need for
support” framing has shifted some attention toward disability (low adap-
tive functioning) as well as non-specific disability characteristics sometimes
associated with autism such as low cognitive ability [31, 32], without a
consistent relationship between these developmental domains and core
autism “symptoms” [33].
This is a good thing, as we have always believed that the focus of service
provision should be on improving adaptive functioning and other person-
centered goals, rather than trying to “correct” or “cure” autistic traits. If
the scale is being used as a guide for service or treatment goals, then it is
particularly fortunate that ASAN secured the removal of “fixated interests”
and “repetitive motor movements” as measures within the severity scale,
given the importance of “special interests” and “stimming” to many autis-
tic people and the clear autistic preference for services oriented toward
improving happiness and quality of life rather than the enforced imitation
of “typical” behavior and appearance.
In contrast, the introduction of the social communication disorder
(SCD) diagnosis appears less damaging because it is rarely utilized. As
186 S. K. Kapp and A. Ne’eman

a major communication scholar and autism researcher put it, “Entry into
the DSM…has not changed anything: There are no new assessment tools,
no clear diagnostic criteria, no stronger evidence for the existence of the
condition and no innovative, effective interventions” [34]. It has attracted
little interest in practice: “Whatever the reason, most expert clinicians
do not find the new diagnosis necessary or useful”, she added. Nor do
researchers, as “more than 10,000 papers have the term ‘autism’ in the
title” compared with “just 10 papers on ‘social communication disorder’”.
Neurodiversity activists deserve some credit for the dearth of diagnoses
of SCD, as we have helped to improve attitudes toward autism such that
the SCD diagnosis rarely gets assigned to reduce stigma (as the Asperger’s
diagnosis once was used). This apparently almost unused diagnosis further
validates ASAN’s approach to not let the supposedly greater stigma of
“autism” interfere with a unified spectrum diagnosis. The relatively low
utilization of the diagnosis is positive, given our longstanding concern that
a SCD diagnosis would open up access to significantly less support than
an autism diagnosis does. Nonetheless, we continue to believe that the
social communication domain of the autism criteria should be loosened.
Indeed, a large study using major databases found that more than four
times as many autistic children failed to meet the social communication
domain requirement only (more than 6.2%) as compared to the restricted
and repetitive behavior domain (less than 1.5%; Huerta et al. [35]). We
activists emphasize that social communication always results from broad
factors within and between people [36, 37].
These kinds of “practical” knowledge of the other side of the service
system support our later recommendation that future iterations of the
DSM should formally include autistic input on the workgroup.
Moving forward, we make the following recommendations for future
consideration:

1. Acknowledge the DSM as a Political Process and a Scientific One:

While ASAN was careful to root our advocacy regarding the DSM
in scientific rather than political language, we always understood the
process as both a political and a scientific one. We mean this in a
non-pejorative way, simply acknowledging the reality that any effort
to articulate a diagnostic criteria will have distributive consequences in
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 187

terms of public resources and social consequences in terms of identity.

In the future, we urge others to acknowledge the political dimension of
the DSM, not with the intent of denigrating the process, but to allow
open consideration of factors that influence those writing the criteria
and to acknowledge the consequences of those criteria on those that are
subject to it. Similarly, we urge other communities to learn from our
example in exploring how they too can play a larger role in influencing
their diagnoses, while leveraging scientific knowledge.
2. Provide for Autistic Representation in Future Revisions: The next
iteration of the DSM should provide an opportunity for autistic voices
to be represented as full and equal partners within the workgroup devel-
oping the criteria. This reflects both the considerable sophistication
of the autistic advocacy community in understanding and engaging
with the research literature and the moral claim for representation,
consistent with the longstanding disability rights principle of “Noth-
ing About Us, Without Us!” Such representation may take multiple
forms, both involving organized autistic-run groups like ASAN, and
the growing number of openly autistic researchers with expertise in
autism, an increasingly common phenomenon.
3. Abandon the new Severity Scale and the SCD Diagnosis: The polit-
ical dimension was not lost on all of the Workgroup—one member
acknowledged that the group introduced the SCD diagnosis for “po-
litical and health reasons…DSM-5 was not a scientific process…the
empirical evidence is not in support of social pragmatic disorder” (Lord
in [38]. Furthermore, the inconsistent relationship between the degree
of core autistic traits, intellectual ability, and adaptive functioning, as
well as lack of consensus on how to measure “severity” in autism [39],
suggest the need to abandon the severity scale. If they are retained,
further research is also needed on the service and clinical implications
of both the severity scale and the frequency of the SCD diagnosis. It
is our belief that such research would ultimately validate our view that
they should be eliminated.
4. Prioritize Research into the Distributive Implications of the DSM-
5 across Groups: Preliminary evidence suggests that much work
remains to close racial and gender disparities in access to diagnosis,
and that class, age and geography remain as factors in who gets access
188 S. K. Kapp and A. Ne’eman

to a diagnosis and who does not [29]. Research should be conducted to

ascertain if DSM-5 has led to a narrowing or expansion of the autism
diagnosis, identifying which groups have been impacted in which way,
and understanding the particular aspects of the new criteria that are
contributing to that outcome. Particular priority should be given to
understanding the impact of the criteria on adults and autistic people
with less obvious traits.
5. Allow for Near-Term Further Revisions: As new information
becomes available on the implications of the DSM-5 criteria, the APA
should acknowledge the need for a DSM-5.1, 5.2, 5.3, etc. before the
DSM-6 process begins. Because so much information used by clin-
icians is now provided online rather than in textbooks, APA has an
unprecedented opportunity to deliver revisions to the criteria on a
faster timetable than in the past, while still acknowledging the impor-
tance of stability and careful deliberation. This revision process should
include autistic voices as full partners and prioritize ensuring that autis-
tic people are not adversely impacted by loss of access to the diagnosis
and resulting services and legal protections.

The DSM is not provided on stone tablets brought down from a moun-
tain—it is a document, written by people, and as such can be influenced
using creativity, evidence, and strategic argument. Historically, critiques
by disabled people of the DSM have often been critiques of psychiatry
itself, either in general or in terms of its specific applicability to particu-
lar groups. This has not lent itself to collaboration between clinicians and
disabled activists, since the latter tend to see the DSM itself as illegitimate.
Some associated with the “anti-psychiatry” movement even reject the idea
that diagnoses represent actual underlying neurological differences from
the norm as opposed to purely responses to trauma.
ASAN’s perspective is different and is instead rooted in the idea of
“neurodiversity”, which challenges the “medical model” that assumes that
the goal of service provision or “treatment” is to restore autistic people to
 13 Lobbying Autism’s Diagnostic Revision in the DSM-5 189

“normalcy” or, as Lovaas put it, indistinguishability from peers [40]. While
we reject the idea that interventions should stress “indistinguishability”
and often challenge the idea of exclusive medical authority, we do not
reject the utility of the autism diagnosis itself or the well-documented
reality that it constitutes a real divergence from “typical” neurology.
In short, we largely agree with psychiatry as to what autism is (a differ-
ence of neurology) and feel that scientific research should play a key role
in defining the diagnosis. Nonetheless, we believe that identification of
autism should transition to a non-pathological system that allows inclu-
sion of evidence-based neutral differences and strengths, recognizing that
autistic traits can be strengths, challenges, or neutral depending on con-
text (and are often deeply valued by autistic people ourselves; Russell et al.
[41]). And while we agree with psychiatry that autism emerges from neu-
rological differences, we disagree with many assessments of how autistic
people should be treated—and wish to call attention to the social, legal,
and political context in which research and diagnosis take place.
The neurodiversity movement, as we understand it, is in creative tension
with mainstream psychiatry, not in opposition [42]. This is useful in that
we are able to articulate an important critique as to how autistic people
are treated while agreeing that the autism diagnosis delivers value and
should be maintained. This is the theoretical framework that allowed our
collaborative approach to DSM-5 advocacy to be as successful as it was.
To complete that success, however, psychiatry must acknowledge the
autistic community (and other similar communities) as an equal, not
as a junior partner. Future iterations of the DSM should include autistic
people within the process in an explicit and acknowledged fashion, sparing
us and them the aggravations, inefficiencies, and hypocrisies inherent in
our needing to launch complex influence operations to have our views
represented. It is our sincere hope that as the worlds of autism research
and clinical practice continue to mature, such a partnership will take form.
As always, Nothing About Us, Without Us!
190 S. K. Kapp and A. Ne’eman

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194 S. K. Kapp and A. Ne’eman

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holder.
 14
Torture in the Name of Treatment: The
Mission to Stop the Shocks in the Age
of Deinstitutionalization
Shain M. Neumeier and Lydia X. Z. Brown

For Silverio Gonzalez, Abigail Gibson, Linda Cornelison, Vincent Mil-

letich, Danny Aswad, Robert Cooper, and unknown others broken down
and killed at the Judge Rotenberg Center and inside institutions every-
where—you are not forgotten and your lives were worth living.

Inhumane Beyond All Reason

Half an hour’s drive south of Boston sits a facility that the United Nations
has specifically condemned for its use of torture, and that Massachusetts’
own state agency for people with developmental disabilities described as

S. M. Neumeier (B)
Springfield, MA, USA
e-mail: shain@disabilityjusticelaw.com
L. X. Z. Brown
Washington, DC, USA
e-mail: lydia@autistichoya.com
© The Author(s) 2020 195
S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_14
196 S. M. Neumeier and L. X. Z. Brown

“inhumane beyond all reason” [1, 2]. It isn’t a historical site, kept intact
only as a memorial for its victims and a warning for the future. Nor
is it an illegal operation that’s survived through secrecy and corruption.
Instead, the Judge Rotenberg Center, a self-described residential school
and treatment center, continues to use an inhumane, behaviorist approach
in working with youth and adults with disabilities, as it has for over forty-
five years, with the open complicity of and funding from Massachusetts,
New York, California, and several other states across the country [3].
The Judge Rotenberg Center’s most infamous form of abuse is electric
shock—a human dog shock collar in the form of a backpack that about
one-fifth of its residents are forced to carry around with them throughout
the day. Despite the singular attention given to this particular aspect of
its program, though, the facility had been open for almost two decades
before it started electrocuting the people in its care. Both its origins and
its practices during that initial period make it clear that the device itself
wasn’t what had made the program particularly bad. Rather, if any facility
were to become the only one in the country, maybe even the world, to
punish autistic and other disabled people with electric shock, it would
hardly be surprising for it to be one started by Matthew Israel, a protégé
of infamous behaviorist B.F. Skinner who wanted to bring his mentor’s
fictional behaviorist utopia Walden II to life but needed a captive audience
to do it, and one which had already killed multiple residents through abuse
and neglect before [4].
The general public only became aware of and (briefly) galvanized in
opposing JRC upon seeing footage—finally made public in April 2012—
of a young man named Andre McCollins being repeatedly shocked while
restrained face down, and this after numerous other media exposés of the
practice in the decades since JRC’s founding. Autistic self-advocates, and
disability rights advocates more generally, have been both aware of and
actively trying to shut the program down for much longer. Our opposi-
tion goes beyond the program’s egregious practices in and of themselves.
State agencies, state legislatures, courts, the federal government, and orga-
nizations such as Autism Speaks that claim to support us have all either
refused to take a meaningful stand against JRC, its philosophy, and its
practices, or have actively protected or promoted them. This speaks not
only to how difficult a task it has been and will be to shut down this one
 14 Torture in the Name of Treatment … 197

alleged outlier, but to how little members of our community are valued,
and therefore how significant the barriers and dangers are, or are likely to
be, in other areas of advocacy.

Tearing Down the Walls They Built

Places of confinement—like residential schools, group homes, mental hos-
pitals, and prisons—have always sought people considered weird, scary,
and subversive to keep inside their walls since their advent. Our history in
autistic self-advocacy and disability more generally is riddled with insti-
tutions, which we know as places of constant violence, forced treatment,
involuntary medical experimentation, isolation, and layers upon layers of
abuse—even and especially the ones that seem nice on the outside. There
were the Fernald radiation experiments where researchers recruited institu-
tionalized disabled children for a “science club” so they could investigate
the effects of radiation by feeding them irradiated cereal without their
knowledge. There were the Tuskegee experiments where researchers delib-
erately withheld treatment from low-income Black workers with syphilis
so they could study the course of the disease. There were the develop-
mentally disabled men confined in a bunkhouse in Iowa and forced to
work for decades in a turkey slaughter factory for a subminimum wage.
And there were the Willowbrooks and Pennhursts—large-scale, state-run
institutions where thousands of people with disabilities were incarcerated
in squalor and subject to all manner of abuses.
The history of prisons as places of confinement is old and dark, the
distinction between disability institutions (places that are supposed to
provide care) and penal institutions (places that are supposed to detain
and punish) constantly blurring until it’s hard to tell much of a difference.
Ableism is the idea that only some people’s brains or bodies are healthy,
whole, functional, and valuable in society, and that the rest of us are broken,
defective, inferior, and unworthy. Put into practice, ableism values us based
on whether we seem “normal” based on constantly-shifting goalposts,
whether we work and produce according to conventional measures, and
whether we can maintain the social order in a profoundly racist and classist
society.
198 S. M. Neumeier and L. X. Z. Brown

JRC and institutions like it operate knowing that most people will
readily accept myths about disabled people’s incompetence, inferiority,
and brokenness. It’s easier to dismiss us as uncontrollable, violent, and
aggressive for no reason than to recognize that many of us have survived
years of trauma caused by compliance training, rejection, isolation, and
serial predators. It’s easier to believe that nondisabled family members
and “experts” know what is best for disabled people than to believe us
speaking for ourselves. It’s easier to lock us away instead of doing the
work necessary to make sure we can all belong and exercise autonomy. At
JRC, fear, revulsion, pity, and hatred pervade the place so strongly that
torture can be resold as “extremely beneficial and lifesaving [treatment]”
[5] that “allows [JRC residents] to integrate into the community, which
is an [Americans with Disabilities Act] requirement” [6].
JRC’s abuses represent some of the most extreme forms of behaviorist
violence. Yet as community pioneer Mel Baggs has observed repeatedly
over the past two decades, JRC is not the worst institution to have ever
existed, but rather, represents thousands of institutions where staff can
abuse, torture, and murder disabled people with impunity and in silence
[7]. An institution may be as small as a single person, Baggs has written,
so long as that person lives under the control of others [8]. Survivors of
institutionalization outside JRC, including both Baggs [8] and activist and
commentator Cal Montgomery [9], often describe aesthetically pleasing
and seemingly progressive institutions as the most dangerous [10, 11].
In this, JRC’s threat becomes clearer—disguised by flashy and bright Big
Reward Store and Yellow Brick Road rooms; clean and pressed shirts and
ties for residents; and newly painted group homes in the neighborhoods
surrounding the main building.
Worse, JRC’s marketing model holding out its ostentatiously decorated
rooms as proof of its benevolence, ironically ignores that a large portion
of the people confined there are much more likely to be overwhelmed
and overstimulated, sometimes even to the point of physical pain, by the
design of those rooms. Non-autistic people, and especially neurotypical
people, also seem woefully unaware of these particular issues, despite the
increase in autism “awareness” campaigns of the past several years.
JRC has also always been an atypical private institution, in its largely
negatively racialized population and its constant, domineering surveillance
 14 Torture in the Name of Treatment … 199

over both residents and staff. Over the past five decades, JRC’s population
has shifted. Its residents were once almost entirely people with develop-
mental disabilities with intense support needs. Now, its residents include
large numbers of people whose primary neurodivergence is psychiatric
disability or mental illness, many of whom arrive through referrals from
the juvenile criminal legal system. According to the National Center for
Education Statistics [12], in the 2015–2016 school year, JRC’s school-
age population was 81.5% Black or Latinx people, with all categories of
people of color or racial minorities combined comprising 87.4% of its
population.
This particular blend of ableist and racist targeting challenges the histor-
ically white autistic community and neurodiversity movement, by calling
into question how and why so many activists working publicly against
JRC have little to no understanding of the racial implications of JRC’s
population and increasingly overt ties to the criminal punishment system,
including transfers from Rikers Island [13]. Further, those committed
to anti-racism work, particularly our white and nondisabled allies, must
also contend with JRC’s exploitation and scapegoating of low-paid line
workers who are largely immigrants of color and often the only JRC staff
ever prosecuted for physical abuse (but never the shocks) while the largely
white administration avoids any meaningful consequences. JRC, like all
institutions, is the inevitable product of a society of prisons, which exist
as a tool of social control for eradicating undesirable people and enabling
appalling abuses (as punishment, treatment, or both) on those powerless
to stop them from happening.
In recent years, National ADAPT, a grassroots direct action disability
rights group consisting primarily of anti-institutionalization physically
disabled activists, has organized multiple actions targeting JRC both in
Massachusetts and in Washington, DC. ADAPT’s anti-JRC work has been
led in large part by the wisdom of several autistic leaders, including Anita
Cameron, a proudly queer Black activist who has been organizing with
ADAPT for decades, and Cal Montgomery, longtime autistic writer and
activist who is also a survivor of multiple institutions. And while we haven’t
been able to participate in most of ADAPT’s actions, we have supported
and amplified their efforts in every way possible.
200 S. M. Neumeier and L. X. Z. Brown

Now the fight against JRC is firmly in the cross-disability community’s

arena, and no longer the sole dominion of the small but mighty autistic self-
advocacy movement, where generations of neurodiversity advocates have
supported one another in fighting it. More promisingly, younger activists
and advocates are now joining forces to renew the struggle against JRC
and similar sites of violence, following in decades of work to tear down
institution walls.

Though We Be but Small, We Are Mighty

Though we grew up on opposite sides of the country, we shared many
interests and experiences that both drew us to the issue of abuse at JRC,
and that made us compatible, personally and professionally. While neither
of us had been institutionalized in a program like JRC nor spent significant
parts of our school years in a segregated special education setting, both of us
had been targeted for disability-related harassment and discrimination by
school officials as well as peers. As bold, outspoken, unconventional people
from the start, we had frustrated and been frustrated by neurotypicals
who’d valued compliance and conformity for their own sake and seemingly
above all else, and whatever victories we might have won in these conflicts
tended to be moral rather than actual.
Both of us also had tendencies to become interested in, and by neu-
rotypical standards obsessed with, dark and violent subject matter, but
from a perspective of wanting to solve the problems that we saw. Lydia,
for instance, had had a longstanding interest in the terrorist attacks of
September 11, 2001, and the U.S. government’s subsequent repression of
Arabs and Muslims as part of its so-called War on Terror. And while by
this point Shain was no longer as fixated on the horrors of animal experi-
mentation as they had been as a child, they’d continued exploring themes
of abuse and oppression through fiction for lack of concrete ideas on how
to confront them in reality.
We joined the decades-long fight to end aversives and close JRC in 2009,
around the same time that we were both entering the autistic activist com-
munity in Boston. Lydia, who had grown up in the Boston metro area
and known they were autistic since early adolescence, was a member of the
 14 Torture in the Name of Treatment … 201

Autistic Self Advocacy Network (ASAN) Boston chapter. By then a high

school student, they were already drafting, then introducing, a bill in the
Massachusetts state legislature that would have mandated police training
on autism. Lydia had connected with ASAN when they learned about the
neurodiversity movement from autistic activists’ criticisms of the char-
ity Autism Speaks, and began reading blogs by activists like Bev Harp
(Square 8, aspergersquare8.blogspot.com), Mel Baggs (Ballastexistenz,
ballastexistenz.wordpress.com), and Kassiane Asasumasu (Radical Neu-
rodivergence Speaking, timetolisten.blogspot.com). Lydia’s early activism
included organizing mass opposition to criminalization and restraints tar-
geting autistic students in Arizona, Alabama, and Kentucky.
Shain, meanwhile, had spent much of their childhood undergoing,
recovering from, or trying to avoid involuntary psychiatric and surgical
treatment. However, they only learned they were autistic as an adult, at
about the same time that they were applying to law school. Although they
had initially joined online message boards like WrongPlanet and Aspies
for Freedom to learn more about their autistic identity and find friends,
they soon ran across information on the widespread, systemic abuse that
autistic and other disabled people face in the name of treatment.
It was in this context, and in the aftermath of several recent and highly
publicized exposés of abuse at JRC, that we separately became aware of the
abuse going on in our own figurative backyard. As with other things in both
of our lives that had horrified and fascinated us, we started painstakingly
collecting information on the issue, then acting in whatever way became
apparent—writing articles, speaking publicly, testifying at hearings—first
on our own, and then, increasingly, collaboratively.

New Resistance and Organizing Against

the School of Shock
While attending law school in Boston, Shain threw themselves into chal-
lenging JRC, confronting Massachusetts Governor Deval Patrick about
JRC during a public appearance, authoring two papers on legal strategies
202 S. M. Neumeier and L. X. Z. Brown

to stop JRC, leading a session at the annual Rebellious Lawyering Con-

ference, and giving an invited presentation at the Symposium on Ethical,
Legal, and Social Implications of Autism Research.
In April 2012, Shain attended nearly the entire medical malpractice
trial against JRC for torturing Andre McCollins, sitting only feet behind
Matthew Israel while taking painstaking notes for the public [14–20].
During that trial, video of JRC’s shocks first aired publicly.
Shain also began working with troubled teen industry survivors, includ-
ing with the Community Alliance for the Ethical Treatment of Youth
(CAFETY). While at CAFETY, Shain took a leading role in organizing
what would be one of the largest anti-JRC protests in the next decade. In
July 2012, outraged by the McCollins video, hundreds of activists, many
forced treatment and institutionalization survivors, gathered in Boston for
a State House rally, then reconvened outside JRC, marching through rain
and barricades.
In Fall 2012, Shain moved to Washington, DC to work as CAFETY’s
policy associate. Shain took the lead role in drafting and presenting a
report on institutional abuse targeting youth for the United Nations Spe-
cial Rapporteur on Torture’s expert consultation on torture in healthcare
settings. There, Shain connected with Lydia, who authored a follow-up
submission on JRC on ASAN’s behalf. Lydia’s report [21] later turned
into an article, “Compliance is Unreasonable: The Human Rights Impli-
cations of Compliance-Based Behavioral Interventions under the Conven-
tion Against Torture and the Convention on the Rights of Persons with
Disabilities,” published in a compilation edited by the U.N. Special Rap-
porteur on Torture [22]. ASAN meanwhile invited Shain to author a brief
history of JRC for its groundbreaking anthology on the neurodiversity
movement [1].
During the same period, Lydia worked alongside advocates from ASAN
Boston to lobby Massachusetts lawmakers for measures to limit and stop
JRC’s abuses. Lydia also began to curate information about JRC for a
dedicated page on their blog Autistic Hoya, which would later become
the JRC Living Archive and Document Repository (https://autistichoya.
net/judge-rotenberg-center).
Throughout 2012 and 2013, former JRC employee Gregory Miller
wrote a series of widely publicized anti-JRC essays [23, 24]. He described
 14 Torture in the Name of Treatment … 203

vicarious trauma from witnessing abuse and being coerced to participate

before realizing the full extent of the harm he was responsible for, his
letters to JRC condemning it, and his resignation. Miller’s Change.org
petition [23] amassed over 200,000 signatures, and incited another rally
at the Massachusetts State House. There, Miller spoke alongside Cheryl
McCollins, who by now had been barraged with constant exposure to
the video of her son’s torture. The year saw three anti-JRC rallies before
the July 2012 demonstration. Meanwhile, Lydia worked with Miller and
others to present about JRC’s abuses for various autism and disability
advocacy organizations.
In January 2013, we planned a demonstration against the U.S. Food
and Drug Administration’s reticence to regulate the shock devices, set
at its Maryland headquarters. The night before, we huddled in a college
dorm building while creating colorful signs—Stop the Shocks, People Not
Experiments, No Compromise on Torture, Disability Rights are Human
Rights, Ban the GED (JRC’s shock device). Three others joined us on the
traffic island across from the entrance. It was a lonely day for us five, and
nearly as many Homeland Security police cars arrived to watch us.
One month later, in February 2013, Lydia received an email containing
a message from a survivor hoping to discuss JRC. Lydia replied to the
letter writer, received permission to publish it anonymously, and began
circulating it to increase consciousness of JRC’s abuses [25]. Roughly
simultaneously, Massachusetts quietly filed a motion to void the 1987
court order enshrining legality of the shocks.
Come 2014, and rumors that FDA officials would finally consider ban-
ning electric shock aversives, we were split with Shain in Oregon and Lydia
in Jordan. The FDA announced a public hearing on the possibility of ban-
ning the shocks in April 2014. Shain mounted a campaign to raise funds to
cover their and later Lydia’s travel to present testimony. Before our flights,
we worked for two nights across continents on our first anniversary prepar-
ing detailed, heavily-cited comments in attempts to pre-emptively bury
JRC’s supporters in research.
Amid hours of testimony from advocates who’d worked in a coali-
tion bridging policy, research, and activism, and JRC’s sometimes scream-
ing supporters, survivors Jennifer Msumba and Ian Cook commanded
204 S. M. Neumeier and L. X. Z. Brown

full attention from all present. Msumba’s testimony, delivered by video,

described intense pain, burns, and post-traumatic stress disorder caused
by repeated shocks to punish and control her. Cook opened his testimony
by announcing that since leaving JRC, he has come out as transgender,
noting defiantly JRC’s use of his deadname while confined there. His con-
clusion could compel no response from JRC’s supporters—“I was in an
abusive relationship two years ago, and part of why I fell prey to it is that
JRC instilled a lesson in me that it is okay for people to hurt me so long
as they are trying to correct me” [26].
Since that hearing, we have collaborated to support many other disabled
people in organizing direct action and submitting testimony against the
torture, drawing constantly on the leadership of survivors like Msumba,
Cook, and Terri Du Bois, who have all spoken out against the horrors they
survived and witnessed.
In October 2014, sensing declining interest in anti-JRC activism, Lydia
hosted Shain and Msumba for a panel on institutional abuse targeting dis-
abled people, which received modest press coverage amid announcements
of Msumba filing a lawsuit. In August 2015, we organized community
testimony against JRC for the perennial Massachusetts hearing, but once
again, the legislature refused to act. In December 2015, we presented
on JRC and other institutions’ abuses to a packed room at a national
conference.
In April 2016, two years after its hearing, the FDA finally announced
a proposal to ban the shocks. Along with many others, we pushed for
massive public pressure to finalize the regulation as law, but the FDA never
made a decision. By 2017, the presidential administration changed amid
conflicting indications about federal agencies’ desires to either accelerate
or severely delay their regulation-making powers. Apart from ADAPT’s
large-scale public actions in October 2016 (at JRC) and March 2018
(targeting the FDA in Washington, DC, and Maryland), public attention
to and interest in JRC has largely faded.
In June 2018, when a Massachusetts probate court judge ruled in JRC’s
favor in the lawsuit stemming from 1987, one major door closed.
 14 Torture in the Name of Treatment … 205

Freeing (All) Our People

Even after what seemed like an increase in the awareness of and activity
to end abuse at JRC, it remains open. Worse, restraint, seclusion, food
deprivation, physical assaults, abusive behavior modification therapies,
and institutionalization of disabled people remain legal and widespread
outside of JRC.
There is some reason for hope of progress at this point, at least as
it concerns JRC in particular. As of the time this piece was written in
early 2019, the U.S. Food and Drug Administration recently announced
that it plans to finalize the proposed ban on the use of shock devices.
Furthermore, although JRC won the most recent legal battle against the
state of Massachusetts over the government’s attempts to ban or even
just limit the use of aversives, the state is in the process of appealing
this decision. JRC has also lost its staunchest ally in the state legislature
after former representative Jeffrey Sanchez, whose nephew Brandon has
been at the facility for decades, was defeated in the 2018 primary elections.
Meanwhile, there are both ongoing and forthcoming lawsuits by survivors
and their families seeking justice, as well as by disability advocates hoping
to bring about systemic change.
At the same time, though, there have been several recent instances of
JRC staff being caught hitting or beating the people in their care that
have resulted in criminal investigations and convictions. These incidents
demonstrate that JRC’s culture of abuse goes much deeper than its use of
electric shock, and that even assuming the shock ban comes into effect,
advocates will need to continue to press for JRC, along with other, similar
breeding grounds for abuse, be investigated, defunded, and ultimately
shut down.
While policy advocacy and lawsuits are two avenues through which to
work toward these goals, the effectiveness of laws still hinges on the frame-
work in which they’re written, the ways in which they’ll be interpreted, and
the stringency with which they’ll be enforced by judges, licensing agencies,
and other decision-makers. Were it possible to get a law or policy banning
the use of not only electric shock devices but all the forms of aversives JRC
206 S. M. Neumeier and L. X. Z. Brown

has used as part of its behavior modification program, this would still not
fully address the core problems that JRC represents. Namely, even many
opponents of the egregious types of aversives used there still see behavior
modification aimed at making autistic people be more compliant as worth-
while. Nor is there nearly as widespread a rejection of institutionalization
as a whole except within small and still relatively powerless communities
of dedicated advocates. To create a society in which not only is there no
JRC, but also nothing remotely comparable, these more accepted goals
and practices have to be challenged just as unequivocally as shock devices.
The good news is that this isn’t just a job for lawyers, lawmakers, and
protesters, or even for others with skills like writing letters or making phone
calls that are often associated with political advocacy. While people in these
roles can and should continue to lend our skills whenever possible, it also
falls to educators and service providers to challenge the beliefs and systems
surrounding autistic youth that allow abuse up to and including the type
that occurs at JRC to continue. These same professionals can also change
their own practices to honor the autonomy, dignity, and humanity of the
people they work with, and train their colleagues to do the same. Likewise,
parents of autistic people have the opportunity and responsibility to use
their voices as culturally recognized authorities on autism to defend their
children against coercive, abusive attempts to make them comply with
neurotypical norms for their own sake. Researchers can also shape the
types of interventions that are further explored, funded, or abandoned by
studying not only what interventions are most “effective” but what they’re
most effective at, and conversely, what outcomes are worth effecting for
the well-being of the people most directly involved. Meanwhile, journalists
and artists can shape cultural narratives around disability, shifting them
away from their current direction of encouraging a return to confinement
and forced treatment in institutions and instead toward one that will make
even more common forms of abuse seem unimaginably horrific within a
generation.
The results of these efforts would go beyond the absence of coercion and
abuse, though. In concrete terms, these positive changes could, should,
and must include a service delivery system that’s truly directed by neuro-
divergent people in every sense. For instance, to the extent that any sort
 14 Torture in the Name of Treatment … 207

of congregate care or living facilities would still exist, they would be peer-
run, non-hierarchical, and truly voluntary. Service recipients would have a
meaningful ability to leave, choose different supports, or refuse placement
in one at any point, without caretakers being able to override this decision
or agencies being able to deny them services in their homes and com-
munities. This would require directing resources away from institutional
facilities and coercive practices, and creating a new system that prioritizes
and in fact guarantees community integration and self-determination.
While most of these approaches and solutions can’t shut down JRC on
their own, they will be crucial in creating a society in which it’s impossible
for any place like it to exist, and more generally, where autistic people can
live safely and on our own terms.

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an-adapter-reflects-on-the-judge-rotenberg-center.
11. Baggs, A. M. (2014, June 09). This is how I feel when I read a lot
of posts about the Judge Rotenberg Center (Web log post). Retrieved
from https://ballastexistenz.wordpress.com/2014/06/09/this-is-how-i-feel-
when-i-read-a-lot-of-posts-about-the-judge-rotenberg-center.
12. National Center for Educational Statistics. (2016). The Judge Rotenberg Edu-
cational Center (ID A9701991). PSS Private School Universe Survey Data
for the 2015-2016 School Year. Retrieved from https://nces.ed.gov/surveys/
pss/privateschoolsearch/school_detail.asp?Search=1&ID=A9701991.
13. Gonnerman, J. (2007, August 20). Nagging? Zap. Swearing? Zap. New York’s
investigations of the Rotenberg Center. Mother Jones. Retrieved from https://
www.motherjones.com.
14. Neumeier, S. (2012, April 16). The Judge Rotenberg Center on trial: Part one
(Web log post). Retrieved from https://autisticadvocacy.org/2012/04/the-
judge-rotenberg-center-on-trial-part-one.
15. Neumeier, S. (2012, April 17). The Judge Rotenberg Center on trial: Part two
(Web log post). Retrieved from https://autisticadvocacy.org/2012/04/the-
judge-rotenberg-center-on-trial-part-two.
16. Neumeier, S. (2012, April 18). The Judge Rotenberg Center on trial: Part three
(Web log post). Retrieved from https://autisticadvocacy.org/2012/04/the-
judge-rotenberg-center-on-trial-part-3.
17. Neumeier, S. (2012, April 25). The Judge Rotenberg Center on trial: Part four
(Web log post). Retrieved from https://autisticadvocacy.org/2012/04/the-
judge-rotenberg-center-on-trial-part-4.
18. Neumeier, S. (2012, April 25). The Judge Rotenberg Center on trial: Part five
(Web log post). Retrieved from https://autisticadvocacy.org/2012/04/the-
judge-rotenberg-center-on-trial-part-5.
19. Neumeier, S. (2012, April 26). The Judge Rotenberg Center on trial: Part six
(Web log post). Retrieved from https://autisticadvocacy.org/2012/04/the-
judge-rotenberg-center-on-trial-part-6.
 14 Torture in the Name of Treatment … 209

20. Neumeier, S. (2012). The Judge Rotenberg Center on trial: Part seven (Web log
post). Retrieved from https://autisticadvocacy.org/2012/04/the-jrc-on-trial-
part-7.
21. Brown, L. X. Z. (2012). Compliance-based behavioral interventions for disabled
People as cruel, inhuman, and degrading treatment and torture (Report to
United Nations Special Rapporteur on Torture). Washington, DC: Autistic
Self Advocacy Network.
22. Brown, L. X. Z. (2014). Compliance is unreasonable: The human rights
implications of compliance-based behavioral interventions under the Con-
vention against Torture and the Convention on the Rights of Persons with
Disabilities. In J. E. Méndez & H. Harris (Eds.), Torture in healthcare set-
tings: Reflections on the special rapporteur on Torture’s 2013 Thematic Report
(pp. 181–194). Washington, DC: Anti-Torture Initiative, The Center for
Human Rights & Humanitarian Law, American University Washington Col-
lege of Law.
23. Miller, G. (2012). Judge Rotenberg Educational Center: Please stop painful
electric shocks on your students (Petition). Change.org. Retrieved from https://
www.change.org/shock.
24. Miller, G. (2013, January 16). Letter from former teacher at Torture Cen-
ter. Autistic Hoya. Retrieved from https://www.autistichoya.com/2013/01/
letter-from-former-teacher-at-torture.html.
25. xxx. (2013, January 15). Judge Rotenberg Center survivor’s letter (Web
log post). Retrieved from https://www.autistichoya.com/2013/01/judge-
rotenberg-center-survivors-letter.html.
26. Open Public Hearing of Food and Drug Administration, Medical Devices
Advisory Committee, Neurological Devices Panel, 207–208 (2014b). Testi-
mony of Ian Cook. Retrieved from https://autistichoya.files.wordpress.com/
2016/04/fda-neuro04-24-14-final.pdf.
210 S. M. Neumeier and L. X. Z. Brown

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 15
Autonomy, the Critical Journal
of Interdisciplinary Autism Studies
Larry Arnold

The dominant discourse in Autism since the first appearance of the word in
the psychiatric literature, has been what has subsequently been called the
Medical Model [1] but in recent times there have been many challenges
drawing from the field of disability studies and the emerging field of
critical autism studies. This is the story of how I came to start Autonomy,
the Critical Journal of Interdisciplinary Autism Studies [2].
I did not discover my autism—I prefer the word discovery over diag-
nosis—during the lifetime of either of my parents. I had not felt any great
need for an identity whilst they were still alive and put off many questions
I perhaps ought to have addressed whilst they were still there to answer
them.
I had been long aware that I related to the world in a very particular
way, when I watched others around me as I grew up, negotiate the world
with an apparent ease that was foreign to me. In my mid-twenties I took

L. Arnold (B)
Coventry, UK
e-mail: lba657@alumni.bham.ac.uk

© The Author(s) 2020 211

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_15
212 L. Arnold

on the care of my mother, who was becoming increasingly dependent

upon on my help. Eventually she would become completely dependent
on a wheelchair for mobility. This roughly coincided with an increasing
awareness of disability rights following the International Year of Disabled
People in 1981, which first became a focus for our activities. We both
had a passion for social justice, she being active in Women’s rights and
myself being a member of the Labour Party since I left University. She
would make public speeches and sit on committees, whilst in addition to
transporting her to meetings I would help her to prepare for them through
research.
When she passed on, it was not as if the focus for that had gone, but
that for the first time I was left on my own to negotiate the social world
on which so much of her activity was predicated.
Diagnosis eventually came at the point of crisis, as it often does to both
adults and teens. For me the crisis was a middle-aged transition with both
parents gone when I first became aware of my fragile status as an adult
with no family to base my identity around. It was for me every bit as
traumatic as the transition from school to work is for autistic youth.
The foundations of my current advocacy had been long in the making
though, something that my mother had encouraged me in when I was
struggling with unemployment more than a decade and a half earlier. She
thought rightly that I needed a focus in life, some kind of structure to
prevent my life from falling apart, and she encouraged me to join her on
a course in disability rights.
That is where my purpose started, and although she was unaware that
I would later attract the label of autism she had sufficient knowledge of
what I needed at that time to give me the confidence to deal with the
public at large.
As a disabled person, she too had become isolated from the “mundane”
world, shunned and rejected by people who were embarrassed and igno-
rant of how to relate to disabled people. Our social circle increasingly
revolved around newly found disabled friends. These were people I felt
most comfortable to be among, and who showed the most understanding
of difference.
The 1980s were a time when the social model of disability was develop-
ing, and my mother had challenged me to accept myself as disabled. She
 15 Autonomy, the Critical Journal of Interdisciplinary … 213

realized through her experiences with other parents, that I would by later
definitions have been considered as having “special needs” when growing
up. The model gave us a powerful tool to confront the inequalities and
disabling mores of society by seeing the problem as not being inherently
within, but caused by the political and economic systems to accept and
adapt for difference. All of the seeds which led me to start Autonomy were
there at the time. Not just the ideological tools, but some practical ones
too. I was an early adopter of computer technology, which I found liber-
ating, and I used it to the full. I used to compile databases of information.
This led to my compiling information and publishing it in several editions
of a directory of services provided by the City Council, National Health
Service, and Department of Social Security.
Whilst the directories told people of what was available, I used those
same skills to campaign for what was not, and I started a newsletter for the
Coventry Council of Disabled People, an organization my mother and I
helped to found in 1983. Thus I learned the skills of editing and word
craft that I later put to such use as I have in academia and elsewhere.

Neurodiversity
Neurodiversity itself was not a concept I discovered until after my mother
had passed on, however it was something I understood from the medium
of disability studies nonetheless, in that I first read Judy Singer’s [3] article
in its context as a contribution to a compilation of emerging critiques of
existing disability models.
As an early adopter as it were, using computers since the mid-1980s,
I finally took the plunge into the Internet in 1996 where I started my
exploration into the world of ‘neurodivergent’ identity. I found others
like myself on various web sites, mailing lists, and newsgroups. I expect
without them I would have remained isolated and unaware but by 1997
I had a website of my own (http://www.larry-arnold.net/), and my first
domain not long after.
My first practical steps in the world of neurodiversity outside of the
Internet came when I started to organize a local meet up for dyspraxic
214 L. Arnold

people under the auspices of the late Mary Colley and the adult group of
the Dyspraxia Foundation which I had been encouraged to join.
It was a world of autistics and cousins, a terminology I discovered on
joining Jim Sinclair’s ANI-L (the mailing list for supporters of Autistic Net-
work International, the organization that Jim had founded with Donna
Williams and Kathy Xenia Grant). There were many of us who had multi-
ple labels of dyspraxia, Tourette’s syndrome, dyslexia, epilepsy, Asperger’s
syndrome and autism so “Neurodiversity” seemed to be a convenient ban-
ner to unite under, and I founded the Coventry and Warwickshire Neu-
rodiversity Group, what may well be one of the first organizations to rally
under the name of neurodiversity. We were a breakaway from a group of
students run along the lines of a support group but by a psychologist with
a failure to understand the need for personal “autonomy.”
I was finding for myself a new role where I could continue the advocacy I
had begun with my mother, in support of a community I increasingly felt a
sense of being at home among. I took it up with a passion and zeal and Jim
Sinclair’s writings had a profound effect. They were, as I described them
recently, foundational documents, our Declaration of Independence as it
were. I did not want to see them lost to posterity because of the ephemeral
nature of the World Wide Web.
In 2003 Mary Colley formed a national group under the Neurodi-
versity heading called the Developmental Adult Neuro-Diversity Asso-
ciation or DANDA for short [4]. This was another important first for
neurodivergent-led and—controlled organizations. Although I had dif-
ferences with Mary over the redefinition of Neurodiversity as purely “de-
velopmental” I was one of several people involved with DANDA who went
on later to challenge the National Autistic Society (NAS) from the per-
spective of the well-used disability rightsmotto “nothing about us without
us.”
My claim to fame was in breaking the glass ceiling of that society in
becoming the first diagnosed autistic person to serve on the board in
2003. Not I humbly add, the first autistic person to serve on the board of
an autism charity—both Thomas McKean and Stephen Shore served on
boards in the USA—but the first to make a major impact on the direction
of the largest autism charity in the UK. For all that autistic people still
 15 Autonomy, the Critical Journal of Interdisciplinary … 215

have their concerns about the NAS, I believe it is vastly different from
what it might have been had I not made my presence felt.
It was around the time that I had become involved in the NAS that I
started to go to conferences. I will call them “conferences about autism”
rather than “autistic conferences” because the autistic input if it was there
at all, was minimal and confined to what Jim Sinclair has called the “self-
narrating zoo exhibit” phenomenon, where the only role open is tokenistic,
and the only justification in the organizer’s eyes is to talk to the non-autistic
audience about how awful it is to be autistic.
I also began to hear the so-called experts on autism speak, and to ask
myself “Are they talking about us?” because it did not sound like they
were describing the people I had come to know increasingly as autistic in
our world. I would suppose a key moment was when I heard somebody
ask autism laureate Uta Frith, if she knew whether the sensory sensitiv-
ities observed among autistic children persisted through adulthood. She
answered that she did not know, “Perhaps they grow out of them” she said.
At which point, I, a strapping autistic “youth” of some 46 summers could
contain myself no longer. “Not for me they didn’t” I called out, not the
last interjection of mine to that conference either.
At this point I need to take a couple of steps back to look at those other
parts of the roadway that were leading me toward the establishment of
Autonomy.

Academia
In 2002 I discovered that the University of Birmingham was pioneering an
Internet-based degree course for professionals involved with, and parents
of, autistic children. I thought “Why should it not be open for autistic
people too?” In the same spirit in which I set about to challenge the NAS
from within, I set about to change the course from within the University.
I became the first of one of a select few autistic people, along with Claire
Sainsbury, David Andrews,and Heta Pukki, to graduate from Birmingham
and in so doing we opened the doors for many others to follow. It wasn’t
easy being among the first; it never has been.
216 L. Arnold

That being said, it was with growing confidence when I moved from
taught master’s level studies to Ph.D. research of my own. I had found my
niche, and more doors opened for me to engage with academics far and
wide on a level playing field as a bona fide researcher, not just a conference
attendee with a list of awkward questions.
I had in addition to my autism qualifications, a vocational Higher
National Diploma in Media Studies, Moving Image, which I had been
studying at the same time as the Web autism course. This was quite a
feat as I was studying Psychology at a third college in the evenings as well.
Toward the end of media course, I produced a commercially available video
with one of the staff there who was also studying media himself. I followed
it up afterward with a second DVD, with the same collaborator. The first
video was all too much “self-narrating exhibit”, but the second one was
based on a presentation I had made at the first ever Autscape conference
in 2005. This time the video was addressing important questions about
the representation of autism, and questioning the diagnostic categories
of autism and Asperger’s syndrome as they then existed in DSM-IV-TR
psychiatric manual [5]. It was perhaps another attempt to talk back to
the non-autistic people who were defining us and it was very appropriate
material for the first conference/retreat organised in the UK by autistic
people, for autistic people. Autscape took its cue from Autism Network
International’s Autreat conferences which Jim Sinclair had organized in
the USA. I have since seen the video described in an academic thesis as
“an important autoethnography in this field” [6].
So everything was beginning to come together. I had experiences as a
publisher and as an editor since the mid-1980s (service directories and
newsletter), and also as an academic presenter and lecturer since 2005. I
had become in every sense an academic and engaged beyond pure advocacy
into the realms of academic matters which defined the very way in which
professionals and clinicians talked about us. I still had a deep and prevailing
sense of dissatisfaction with the whole manner in which academia referred
to us and continued to consider it as a form of exclusion in which it was
still largely a discourse about us without us.
I had answered back with my video, and with my conference presenta-
tions but it was increasingly clear that the two worlds which CP Snow had
described in the 1950s where humanities did not understand science, and
 15 Autonomy, the Critical Journal of Interdisciplinary … 217

science had no grasp of the humanities was still the paradigm for today. On
the one hand, I was familiar and had engaged with the medical/psychiatric
researchers, and on the other with the worlds of sociology and disability
studies and I began to wonder whether we were really getting that much
respect from either. It was also a question of ethics, not conventional ethics
as in getting your proposal past the ethics committee but more teleological
in the sense of whom did the research serve.
So summing up, the factors leading me toward “Autonomy” were: a
foundation in disability rightsand mental health advocacy from a social
modelperspective; experience of editing and publishing; and experience
of academia as a student, as a researcher, and as a presenter. What else did
I need other than the will to start it?

The Journal
Eventually, whilst still completing my Ph.D., I thought I might as well
go for it and start a journal of my own. I had managed already to capture
the essence of video production and publication, and I knew I had the
capacity to learn whatever I needed to realize what I wanted to do. I wanted
it to be something more than merely another version of the many websites
and blogs already on the Internet; I wanted something that looked and
behaved like the established journals which academics are used to reading
and contributing to. I looked around and found that open publishing was
the way to go, and determined that the Open Journal Systems platform
which had been developed for this purpose by the “Public Knowledge
Project” [7] was the best one for me to use, being as it was free to download
and had the right tools to create a professional-looking journal that could
sit easily among the existing online journal formats.
I determined from the start that it should largely be a peer-reviewed
journal, in order to give it the same academic status as journals such
as the Journal of Autism and Developmental Disorders, and Good Autism
Practice. However, I also allowed scope to include articles that had never
been published or written in an academic context but which could still
be considered, as I said before, as “foundation documents” of our autistic
movement and community.
218 L. Arnold

The choice of name, Autonomy, suggested itself because not only does
it encapsulate what the thrust of my thinking had been, agency and
autonomy for autistic people, it contains the same “Aut” root of Autism,
which has been used before for organizations and events such as Autreat,
Autscape, and Autreach. Of its subtitle (the Critical Journal of Interdis-
ciplinary Autism Studies), “Critical” was to embody a questioning and
examining of the prevailing paradigms of autism research. “Interdisci-
plinary” indicated that it wished to include contributions from a variety
of academic fields.
I endeavored from the beginning to get some support from estab-
lished and respected Autistic academics such as Stephen Shore and Temple
Grandin, who both agreed to lend their approval to the journal. Closer
to home, I sought help and general advice in my editorial decisions from
Dinah Murray and Damian Milton, both of whom were associated with
the University of Birmingham at thetime.
At first I was wary of pushing the Birmingham connection. I had incor-
porated the University as part of the masthead design for the journal and
when the head of the college of social sciences asked to have a private
word with me, I was worried that I had committed another academic faux
pas. Fortunately it turned out that he wished me to introduce the journal
at a plenary session of the forthcoming education graduate conference.
I was even presented with an award for my contribution to the research
community on the basis of my efforts to set it up.

The Ethos of “Autonomy”

In the words of the rubric: “The emphasis will be on encouraging con-
tributions from autistic scholars who have hitherto had limited exposure
to academic publishing. We will feature papers reviewed by respected
academics in the appropriate fields, reviews and also feature an opinions
section which it is hoped will stimulate a lively interdisciplinary debate.
‘Autonomy’ will appeal to the widest range of the current autism research
community and foster cross disciplinary discourse between the fields of
medical research, education and sociology amongst others.”
 15 Autonomy, the Critical Journal of Interdisciplinary … 219

This means in practical terms it encourages, but does not limit itself
to autistic contributors alone, as it is important to foster debate and be
inclusive. Contributors do not have to declare that they are autistic as
there are a number of academics, who for a variety of reasons would find
full disclosure difficult in their working environments.
However one early aim of the journal was to highlight and republish
pieces that were not written from an academic perspective, but an autistic
one. These articles were perhaps familiar to the autistic community but
in danger of becoming lost, forgotten or difficult to find as the Internet
grows and changes. They were written by people who have had important
and pertinent things to say about the autistic community and who have
certainly been influential in the development of autistic advocacy, Jim Sin-
clair’s “Why I Dislike ‘Person First’ Language” [8] and “Don’t Mourn for
Us” [9] being two examples. I sought to bring these within and alongside
the academic canon on the basis of merit, by giving them publication in
an academic journal.
“Autonomy” is not without controversy however. Other academics since
the debut of Autonomy have staked claims to Critical Autism Studies, and
some of these have been antagonistic to the original claim, in that they are
predominantly non-autistic-led discourses. In the interests of dialogue, it
follows that not every article in Autonomy will have been written by an
openly autistic author. There is room for allies, and for those who are
uncomfortable with sharing their status in the public domain for fear of
professional repercussions. The main focus however, is on respect toward
the autistic community of scholars and the intellectual ownership of ideas
that originated within Autistic communities.

References
1. Oliver, M. (1990).The individual and social models of disability. Paper presented
at Joint Workshop of the Living Options Group and the Research Unit of the
Royal College of Physicians. On People with established locomotor disabilities
in hospitals July 1990. Retrieved May 10, 2010, from http://www.leeds.ac.
uk/disability-studies/archiveuk/Oliver/in%20soc%20dis.pdf.
220 L. Arnold

2. Arnold, L. (2012). Editorial. Autonomy, The Critical Journal of Interdisciplinary

Autism Studies, 1(1).
3. Singer, J. (1999). Why can’t you be normal for once in your life? In M. Corker,
& S. French (Eds.), Disability discourse. Buckingham: Open University Press.
4. Arnold, L., Milton, D., Beardon, L., & Chown, N. (2018). England and
autism. In F. R. Volkmar (Ed.), Encyclopedia of autism spectrum disorders. New
York: Springer.
5. APA. (2000). Diagnostic and statistical manual of mental disorders, edition four
(various ed.). Washington, DC: American Psychiatric Association.
6. Ellis, S. J. (2014). Perspectives of the autistic ‘Voice’: An ethnography examining
informal education learning experiences. Sheffield: Sheffield Hallam University
Research Archive.
7. Public Knowledge Project. (2014). Open Journal Systems. Retrieved March
25, 2018, from Open Journal Systems https://pkp.sfu.ca/ojs/.
8. Sinclair, J. (1999). Why I dislike person first language. Retrieved May 20, 2010,
from http://web.archive.org/web/20070715055110/web.syr.edu/~jisincla/
person_first.htm.
9. Sinclair, J. (1993). Don’t mourn for us. Our voice, the newsletter of Autism
Network International, 1(3).

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 16
My Time with Autism Speaks
John Elder Robison

I didn’t know much about autism when I began my journey as an advocate.

What I knew was my own life, much of which had felt pretty crummy.
Yet I had stayed the course, leaving home, learning to make a living, and
figuring out how to be an adult in America. At some point I realized I had
done ok, despite my marginal childhood, and I started looking for a way
to give something back to the community.
At the time my sense of community was local; defined as the area in
Western Massachusetts where I’d grown up. By the early 90s I was in my
30s, with a wife and a young son, and I knew there must be millions of
young people growing up marginalized, as I had been. Some were abused,
others abandoned. I wondered who spoke to them, and if anyone told
them life can get better when we grow older. That was the start of my
advocacy.
A friend of a friend invited me to a school where I talked with at-risk
kids. Another friend invited me to the local jail where I met people in a

J. E. Robison (B)
Amherst, MA, USA

© The Author(s) 2020 221

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_16
222 J. E. Robison

pre-release program. I made several unforgettable visits to Brightside, a

Catholic organization that sheltered teens who were victims of abuse and
neglect. Having grown up in those circumstances myself I understood the
pain of those kids.
My message was that we can move beyond childhood traumas and
become successful adults. We are not predestined for jail or the street.
Even without college credentials (which were out of reach for me and
many of them) I’d been successful (at building a business repairing and
restoring cars), and if I could find a wife, get a job, or establish a business,
they could too.
In the midst of that advocacy I learned I am autistic. A therapist who’d
gotten to know me shared that insight, essentially out of the blue. That
was a stunning discovery for me. For the first time, I was presented with a
non-judgmental explanation for so many of the challenges of my life. Later
I would come to see how autism didn’t just disable me—it also helped me
with unusual powers of focus, concentration, and sensory sensitivity.
When I first heard I was autistic, I was disbelieving because I imagined
autism as total disability and I didn’t see myself that way. But as I read Tony
Attwood’s book Asperger Syndrome [1] I realized the therapist was right.
The description from the book was me, point by point, and that insight
was enough to open my eyes, and begin a process of self-improvement
that continues today. That informal diagnosis has been confirmed by the
Autism Diagnostic Observation Scale [2] and other processes at autism
clinics. All opened windows into my mind, and how I’m the same and
different from others around me.
Today I know that people of my generation were seldom diagnosed
with autism if we could talk, and there is a whole generation of people
like me, who grew up without a proper diagnosis. In school we were said
to be emotionally disturbed, oppositional, lazy, or stupid. The problem
was, those descriptors didn’t lead to therapies that were very useful for
someone like me. They also predisposed others to a rather negative view
of individuals who were “different.”
Once I learned about autism I realized there must be many other young
autistics just like me. I felt I had a message for them, but did not know
how to find them. In 2006 I decided to share my thoughts in a book. That
 16 My Time with Autism Speaks 223

narrative became Look Me in the Eye [3] and its publication connected me
to autistic people all over the world.
Readers looked to me as an expert on autism, but I wasn’t an expert
in the traditional sense. I had never studied autism in the way a teacher
or psychologist might. Yet I had a lifetime’s experience being autistic. To
the extent my traits were characteristic of autistic people, I had an inside
understanding of them.
Today autistic people are visible everywhere, but that was not the case
a decade ago. We existed in the same numbers but we were invisible.
Most adults were like me—undiagnosed. Children and adults who were
diagnosed were often ashamed because autism had the reputation of being
a terrible disability. Few were willing to step forward and say, Look at me!
I’m autistic!
Yet some people did just that. Daniel Tammet released a bestselling
book (Born on a Blue Day) [4] about being autistic a few months before
my own came out. Temple Grandin and Margaret Scariano [5], Donna
Williams [6], and Stephen Shore [7] had published stories previously. All
of us were unique in terms of our interests and abilities, but we had this
in common: We recognized that autism was a way of being, not a disease
to be cured, and we should make our best life as autistic adults.
That viewpoint stood at odds with an emerging community of parents
whose kids were being diagnosed in increasing numbers. Changes in the
diagnostic standards and evolving awareness resulted in an explosion of
diagnoses, and at the time, many assumed autism itself was becoming an
epidemic. Some parents seized on the idea that their kids were injured by
vaccine, and they talked about cure and prevention.
When Look Me in the Eye went on sale it competed with another newly
released book, Louder Than Words [8], which told the story of a child who
was supposedly rendered autistic by vaccine. Both books were bestsellers
in the autism community but their messages could not have been more
different.
After my first book came out I heard from a number of autism organiza-
tions, the largest of which was Autism Speaks. They were newly founded,
and already controversial when Look Me in the Eye was published. Their
portrayal of autism was that of a monster that ruined marriages and stole
224 J. E. Robison

children. While that played well for fundraising, it was challenged from
the beginning by autistic people, who found that kind of talk offensive.
My own book and life story were about building my best life, just the
way I was. Having learned through study that autism is a stable neuro-
logical difference, not subject to cure, I saw no other sensible course of
action. When I read the narratives that were emerging I wondered how
much proposed research would possibly benefit people like me. They were
focused on finding a cause so they could find a cure. I saw that as totally
irrelevant to an autistic person like me. My problems were how to get
through school, how to find jobs, and how to sustain relationships.
As I met more autistic people I came to see how some seem far more
impaired than me. I saw families where one person was autistic with no
trace of autism elsewhere in the family tree. Other families seemed full
of autistic people, in every generation. The cause of autism in my case
and some others seemed evident—it was woven into our family tree. It
wasn’t so clear in some of the other families. That opened my eyes to the
idea there may be many “autisms” and many paths into this thing we call
autism.
Scientists began writing me as soon as my book was announced. They
were eager to find autistic adults who could talk about their ideas for
autism research. Those conversations led to my joining advisory boards at
universities, at hospitals, and in government. It was there I began meeting
autism scientists and policymakers.
In December of 2007, University of Washington child psychologist
Geraldine Dawson was named Chief Science Officer of Autism Speaks.
After reading my book she sought my input on the direction of autism
science. I became the first autistic person to advise Autism Speaks on
research to serve autistic people.
By that time I had visited a larger number of autism schools and pro-
grams, and talked to countless autistic individuals. One thing that came
through very clearly was that we needed help with independent living.
For some of us, that meant help with organization. For others we needed
strategies to manage sensory sensitivities. Some needed help communi-
cating with the non-autistic public around them.
As I began talking to autism researchers I realized I did not have to be
a scientist to have a valuable perspective on autism research. My life as an
 16 My Time with Autism Speaks 225

autistic person allowed me to put proposed research in perspective with a

key test: What would this mean to someone like me? All too often, proposed
studies had no beneficial connection to actual autistic people.
That bothered me a lot, particularly as I learned about the breadth of
medical problems afflicting autistic people. For example, epilepsy is man-
aged among the non-autistic population but it’s seemingly uncontrollable
for many autistics. Many of us live with severe gastro-intestinal issues.
Anxiety and depression are constant companions for most of us. Those
should have been hot topics for research, but they were not.
When I looked at the research Autism Speaks was funding, I saw next to
nothing that had potential to resolve the problems I saw among autistics.
Instead they were heavily focused on basic genetics and biology. To me,
the disconnect was obvious even as the researchers defended their current
courses of action.
From the beginning, autistic people were skeptical of my involvement.
Some asked why the science community would pay attention to me, a
lone autistic who was not even a scientist. Others asked how I could have
anything to do with a group that said such awful things about autistic
people. The language Autism Speaks used to describe autism and autistic
people was very troubling, but I believed they might change their message
once exposed to actual autistic adults. Staffers like Dawson seemed to
share that belief. In hindsight I see that thinking was naive. It was hard
to imagine myself as diseased or damaged, but I understood those words
made people open their wallets and I knew our community needed help.
My involvement was limited to recommending courses of research. I had
nothing to do with Autism Speaks public statements. It always troubled me
when people in the community thought I was an Autism Speaks employee
or spokesperson, because I was never either of those things. It embarrassed
me to be associated with them, but at the time they were the largest private
funder of autism research in the USA and I thought my impact there might
be more impactful than at a smaller organization.
I continued to advise Autism Speaks on science, and I also continued my
service on autism committees at the National Institutes of Health (NIH),
the Centers for Disease Control (CDC), and the Department of Defense.
Of those groups, Autism Speaks was always the most controversial. I often
226 J. E. Robison

wondered if it was worth staying involved, but I kept harboring a hope

they would change their rhetoric.
Then in 2009 [9] Autism Speaks released its now infamous I Am Autism
video which characterized autism as a monster, destroying lives and fam-
ilies. As an autistic person it was hard to see that video as anything but
a demonization of the essence of what I am. Thousands agreed, and the
ensuing public relations debacle highlighted the widening gulf between
certain parents and the emergent community of autistic adults. Parents
who imagined themselves as victims of the “autism monster” justified
themselves by saying autism in people like me was somehow different,
even as the evolving science said that wasn’t true.
There was little doubt that I was less disabled than some other autistics,
but people vary in every community, and one thing we autistics tend to
agree on is our perception of ourselves: we tend to feel less disabled than
outside observers judge us to be. I’ve met a few autistics who think autism
is a horrible disability and want a cure, but most of us accept that we are
what we are, and do the best we can.
I tried very hard to deliver this message to parents inside and outside
of Autism Speaks. In addition to being an autistic person, I was a parent
of an autistic son, and I thought I understood how they felt, even if I did
think some of their ideas were unhealthy and counterproductive.
In July of 2012, I attended a strategic planning meeting for Autism
Speaks in San Francisco. I sat in a room with a dozen esteemed scien-
tists from some of the most prestigious institutions in the world. At that
meeting, I proposed that we ask the Autism Speaks governing board to
drop the word “cure” from its mission statement. The scientists were all in
agreement. Instead, we proposed that we funded research to understand
the biological basis of autism and how we might relieve specific aspects
of autistic disability. The scientists agreed that no one was researching the
broad idea of “cure,” and evidence suggested “cure” was not a realistic goal.
Remediation of disability is a realistic goal.
After the meeting I expected to hear something from Geri Dawson.
Perhaps they’d want me to attend their board meeting, to explain this
proposed mission change. The main Autism Speaks board meeting came
and went, and nothing happened. I called Geri. “They were not ready to
 16 My Time with Autism Speaks 227

hear that,” she told me. The resolution had never even been discussed. I
was deeply disappointed, and sad.
A few months later Geri left for a new job running the autism center
at Duke University. I was sorry to see her go, but I understood as I shared
her frustration with the group’s fixation on what I believe we both saw
as unhealthy ideas. Rob Ring—a former pharmaceutical executive—was
named to take her place.
In October of that year (2013), Autism Speaks announced an autism
summit to be held in Washington, DC. Significantly, there was not a single
autistic person scheduled for attendance. Then in early November Autism
Speaks founder Suzanne Wright followed that up with a truly horrific op-
ed. In it, she suggested that millions of autistic people were “lost,” taken
from society by the monster autism. She said families, and people like me,
were “barely living.” The response from autistic people was predictable.
I found her article extremely offensive. It made me think of the I Am
Autism piece they had published four years previously. Worst of all, people
in the autism community blamed me for being complicit in the newest
Autism Speaks debacle. More than a hundred people wrote me to ask how
I could be associated with an organization that promulgated ideas like
Wright’s.
That was a question I could not answer, because I felt the same way. In
addition, I felt a deep sadness, realizing my four years of advocacy work
within the organization had not made one bit of difference to the Wrights,
who headed the organization. I wrote a letter to Liz Feld, the president.
In my letter, I said:

Autism Speaks is never going to be accepted by the broader community

of autistic people if they continue the fear-mongering and “sick child”
talk…This kind of talk does not do any of us any good.

The idea that [Mrs. Wright] would once again convene a “summit” with-
out any meaningful autistic representation is extremely troubling to me,
particularly because we’ve covered this issue before.

I’m starting to feel like Mrs. Wright is in a very different place than most
of the people I see in the autism community…Is Autism Speaks going to
228 J. E. Robison

be able to shift its focus away from her “diseased child” model to focus on
consulting with autistic people of all ages…about how their needs might
best be served, in a non fear driven environment?

After two days without an answer, I made my decision. On November

13, 2013, on my way to deliver an autism talk in Grand Rapids, Michigan,
I wrote a resignation letter. I sent it to Liz Feld’s email and I also posted it
on my blog (http://jerobison.blogspot.com). The reaction from the autism
community was swift.
Most commenters supported my decision to stand up for my beliefs.
Online comments (there were over 200 on the blog post alone) were
critical of the ideas expressed by Mrs. Wright and of Autism Speaks for
continuing to give her views a home.
There were others, though, who expressed solidarity with Mrs. Wright’s
ideas. Reading their comments, most seemed to be parents who blamed
autism for stealing their own children. While I understood how parents
might feel that way, I had spoken about how unhealthy that kind of
thinking was, both for the families and for the autistic children. Yet it
persists in a portion of the community to this day.
I hoped my departure would precipitate some kind of action, but
Autism Speaks remained silent on that issue. A number of staffers spoke
to me privately, expressing sadness or regret over my decision to leave.
They all seemed to understand how I felt. In the past five years many have
moved on to other jobs.
Autism Speaks’ research portfolio remains heavily weighted toward biol-
ogy and genetics, and studies that are unlikely to materially benefit this
generation of autistic people. I’ve come to see disagreements with this view
as illustrative of the disconnect between what we autistics say we want and
need, and what researchers say they should study to help us. It’s one reason
we autistics need more influence over the research agenda.
The organization’s silence led me to consider whether I overestimated
my importance to the group. Geri Dawson and the scientists were sincere
in seeking my input and I feel we learned much from each other. Yet the
Wrights seemed to exist in a separate world, and I don’t know if they
even knew who I was. I’d been the only autistic person to have a voice
in science, but that did not seem to make a lasting difference. I’d spoken
 16 My Time with Autism Speaks 229

often, but I wasn’t heard by the people in power. Meanwhile, I gained a

false confidence as lower-level staffers agreed with my positions. None of
us had any influence with the leaders. As time passed and I reflected, I
realized Autism Speaks was misnamed. They do not speak for autism, or
autistic people, and they never did.
Their founder was a media executive; their name a marketer’s creation.
Many of the staff described themselves as non-profit professionals, and
none of the senior people were autistic.They were very effective at fundrais-
ing, and painting a picture of autism that elicited widespread sympathy.
Autism-as-tragedy helped them raise hundreds of millions of dollars.
Groups like Charity Watch reported that they spent lavishly on themselves
and their organization compared to other medical nonprofits.Their annual
reports told a sad story. Monies raised locally paid headquarter’s salaries
and supported distant researchers. Very little returned to the communities
who raised the funds. Perhaps it’s all about the money, I thought, and my
ideas of acceptance and fitting in are not a basis for tens of millions in
donations the way “stolen children” and “ruined families” are.
I had imagined I was making a difference on their science board, but
the Wrights called the shots when it came to investing the organization’s
money, and the research I had advocated for took a back seat to the Wright’s
agenda, which appeared to be biology and cure. Had I been able, I would
have made different choices.
Autism Speaks would probably disagree with me, but I felt then and
feel today that their focus on causes and cures did very little to help the
millions living with the reality of autism. From the beginning of my autism
advocacy, I have kept that goal in sharp focus and I’m quickly frustrated
when others can’t do the same.
I met a number of bright dedicated researchers while volunteering
for the Autism Speaks science board. Many of us continue to work
together today, on government boards, with the World Health Organi-
zation (WHO), and with the International Society for Autism Research
(INSAR), the professional society for autism researchers. Those other orga-
nizations have changed significantly in response to autistic input. We have
a strong voice in creation of our government’s autism plans. The WHO’s
International Classification of Functioning, Disability and Health (ICF)
Autism Core Set recognizes both disability and exceptionality in us, thanks
230 J. E. Robison

to autistic input (http://jerobison.blogspot.com/2018/04/autism-ability-

disability-and-icf-core.html). INSAR has encouraged making autistic peo-
ple research collaborators. American public health agencies do the same.
They expand their embrace of the community every year.
Since my departure Autism Speaks has seen considerable upheaval. Liz
Feld left, followed by Rob Ring. Mrs. Wright passed away in 2016 and
her husband resigned his position a short while later. The organization’s
funding of research has dropped these past few years.
Two years after my resignation Autism Speaks announced Stephen Shore
and Valerie Paradiz were joining the organization’s board. They were actual
autistic people with a say in the group’s governance. While I applaud them
for doing that, I’m still waiting for substantive autistic-led initiatives from
the organization.
Elsewhere in the autism community, there is an evolving and sometimes
heated dialogue about who should speak for autistic people. For the last
few decades advocacy has been the province of parents, grandparents,
and professionals of various stripes. They were the ones who rose up and
demanded services in response to the wave of new diagnoses beginning in
the 1990s.
Today the kids they advocated for have grown up, and many are finding
their voice. One principal venue for autism advocacy is now the Inter-
agency Autism Coordinating Committee (IACC), which produces the
strategic plan for autism for the US government. IACC guides NIH,
CDC, Defense and other government agencies as well as private groups.
At first IACC’s advisers were autism researchers, clinicians, and parents.
For the past decade, IACC has also had actual autistic people as members.
I was appointed in 2011 and continue to serve as of this writing.
At IACC meetings I routinely see differences of opinion between non-
autistic parents and actual autistics. The conversation often turns to who
should have the primary voice, and I see that it’s very hard for non-autistic
parents to let go. Yet I feel that is what must happen. Adults speak for
themselves in all other walks of life. Autism is a lifelong condition, not a
childhood disorder (as was once thought). Autism research, therapy, and
policy should be guided principally by autistic adults. It’s that simple.
 16 My Time with Autism Speaks 231

Elsewhere in society we accept the idea that anyone who speaks for a
group should be a member of the group. By that reasoning any spokesper-
son for autistic people should be autistic. A parent can certainly speak
for autism parents, but that is a different community and like all parents,
their wants and needs are sometimes at odds with those of their children,
particularly as the children grow up.
The day may come that Autism Speaks is led by actual autistic people.
I hope that happens. Alternately, Autism Speaks may remain primarily
a parent advocacy group for families with young children on the autism
spectrum. That is effectively what they were in the beginning, and where
they may be most at home.
Actual autistic people seem more drawn to autistic-founded and
autistic-led groups like the Autistic Self Advocacy Network (ASAN) and I
expect they will grow more powerful as their membership grows and ages.
I joined the Autism Speaks science board in the hope I could help move
their science in a direction that would be more beneficial to autistic people.
At the time I thought their legacy would be good autism science. I left the
Autism Speaks science board because of their hurtful depictions of autism
and autistic people. Autism Speaks did not make a huge mark in science,
and with drops in funding their significance in that world has diminished.
It’s toxic rhetoric that has become the organization’s legacy.
Meanwhile we autistic people are still here. We’re not missing, and we’re
not lost. Monsters will not take us, because we are strong. When it comes
to policy, parents and clinicians certainly have a say, and deserve a seat at
the table, but the table rightly belongs to us. We are autistic people.

References
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London, UK: Jessica Kingsley Publishers.
2. Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., DiLavore,
P. C., et al. (2000). The autism diagnostic observation schedule-generic: A
standard measure of social and communicative deficits associated with the
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spectrum of autism. Journal of Autism and Developmental Disorders, 30 (3),

205–223.
3. Robison, J. E. (2007). Look me in the eye: My life with Asperger’s. New York,
NY: Crown/Archetype.
4. Tammet, D. (2007). Born on a blue day. London, UK: Hodder.
5. Grandin, T., & Scariano, M. M. (1986). Emergence: Labelled autistic. Novato,
CA: Arena Press.
6. Williams, D. (1992). Nobody, nowhere: The extraordinary autobiography of an
autistic. New York: Times Books.
7. Shore, S. M. (2003). Beyond the wall: Personal experiences with autism and
Asperger syndrome. Shawnee Mission, KS: AAPC Publishing.
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www.youtube.com/watch?v=9UgLnWJFGHQ&t=14s.

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to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 17
Covering the Politics of Neurodiversity:
And Myself
Eric M. Garcia

I first learned about neurodiversity in the summer of 2015 as a reporter for

National Journal. I was recruited there largely by Ron Fournier, a columnist
I befriended when I emailed him as a college student after he wrote a story
about his son with Asperger’s syndrome. Ron suggested I read a book
called Neurotribes: The Legacy of Autism and the Future of Neurodiversity
by his friend Steve Silberman [1]. It was the first time I read about the
neurodiversity movement.
At around that time, I was writing an essay that mixed reporting with
my own personal experiences as an autistic reporter for one of the last
print editions of National Journal [2]. Even though I had been diagnosed
with what was then Asperger’s syndrome when I was kid, I had almost no
experience writing about my own experiences or exploring much about
the autistic community in D.C. or at large. I knew vaguely what autism
was but did not know how my own story fits into the larger context about
autism and certainly didn’t understand what neurodiversity meant.

E. M. Garcia (B)
Washington, DC, USA

© The Author(s) 2020 233

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_17
234 E. M. Garcia

I hoped it would be a fun, chatty piece about the secret lives of autistic
reporters and people who work in politics in a city that values social capital
even when autism makes socializing difficult.
But the magazine’s editor, Richard Just, asked me why this story should
exist. In a mix of frustration and hubris, I said American society focuses
too much on “curing” autistic people and not enough on helping autistic
people, particularly adults. Richard said he wanted 10,000 words on it.
The essay—a slim 6500 words—set my trajectory today [2]. While
I didn’t have a clear idea of what the term neurodiversity meant, the
piece argued policy should bend toward this radical idea. The notion was
society should accept and accommodate people with autism, dyspraxia,
ADHD, or other conditions considered an abnormality. Neurodiversity
wasn’t diminishing the specific challenges of autistic people but rather,
the essay argued, like other disability rights movements before it, society
should welcome neurodivergent people and give them the tools necessary
to live a life of dignity. Through research, interviewing, and reporting,
I see that neurodiversity is an argument for civil rights; that instead of
the world trying to make us be more “neurotypical,” the world should
celebrate our atypicality and accommodate accordingly.
As a reporter, when I am ignorant about something, I call people knowl-
edgeable about it. But when it came to reporting about autism, I noticed
while many journalists quoted parents of autistic children, professors,
nonprofits, or legislators, they often ignored autistic people.
Though they have a gross oversight, I don’t blame most journalists.
Oftentimes when we are ignorant about a new beat, we type in an assort-
ment of words into Google and hope for the best. With autism, the
first results are often groups with little autistic representation like Autism
Speaks—which only recently began adding autistic people to leadership
positions [3]—professors, and parent leaders. Similarly, because autistic
people were seen as a burden, they went unheard while their parents’ strug-
gles took center stage. Hence, most autism stories don’t feature the people
with the most expertise: the people who live with autism on a daily basis.
That matters because those who are most heard get the most attention
and in turn, are the ones who shape policy. It is for this reason I made
it a point when I wrote my initial story to make sure I interviewed as
many autistic people as possible. It was largely through Dylan Matthews,
 17 Covering the Politics of Neurodiversity: And Myself 235

a writer at Vox.com, that I was introduced by groups like the Autistic Self
Advocacy Network; its leaders Ari Ne’eman and Julia Bascom; as well as
other prominent autistic advocates like John Elder Robison, Lydia Brown,
Liane Holliday Willey, and Dena Gassner.
I became more well-acquainted with other autistic and neurodiversity
advocates like Finn Gardiner, Sara Luterman, Samantha Crane, Morénike
Giwa Onaiwu and Sharon daVanport. All of them were essential to under-
standing permutations of autism and what it meant to celebrate neurodi-
versity, and in turn they gave me resources fellow reporters didn’t have: a
cache of autistic people whom I could consult anytime autism popped in
the news.
It might sound trite to say something “changed my life” but writing
and publishing that essay completely upended my career. Since I began as
a college reporter, I had been taught to avoid making yourself the news
and to be an objective arbiter of the news. But I remember the day the
essay being published and receiving a call from Ron on what would be my
last day at National Journal with him in tears simply saying “holy shit”
with pride at how moved he was by it.
That same day, I got a call from Sen. Orrin Hatch, then the most
senior Republican in the United States Senate who was then chairman
of the Senate Finance Committee, saying that he had helped sponsor the
Americans with Disabilities Act that passed in 1990 and that if I ever
wanted to speak with him about autism, I was welcome to visit his office.
I had asked Sen. Hatch questions multiple times in the halls of Capitol
Hill and was never any more than a nondescript nameless reporter. But
now, I was someone whom he knew on a first-name basis and could pick
out.
Similarly, for a week, when I opened Twitter I would see journalists
whom I deeply admired write about how my essay would “move you.”
Some of them were bylines I read regularly in The Washington Post, The
New York Times, and people elsewhere, and whom I regularly emulated. A
few months after the publication of that essay, I saw a journalist I admired
and emulated while I was in college at a gala and he told me the piece was
amazing. While I was humbled by him complimenting me, in the back
of my mind I remembered when he didn’t return my email when I was a
lowly intern in Washington asking if we could meet for coffee.
236 E. M. Garcia

At first this success gave me a sense of vindication about my decision to

write. I could now pitch stories about autism and people would consider
me credible because I poured my heart into this piece. It also landed me
a book contract that would further burnish my credentials as an “autism
expert” journalist.
But in the same respect, while I wanted my piece to shed light on autism,
I feared that I was just becoming another “inspirational story” about how
I overcame autism. I worried that in my attempt to counter the narrative
that autism is a debilitating condition, I somehow inadvertently lifted
myself up as above being autistic. I don’t think I ever said it to myself but
possibly subconsciously, what I decided to do as a journalist was to show
that my self-portrait was not the outlier but was in fact common among
autistic people and that we were in fact, deserving not of pity but of shared
humanity.
What was peculiar about this newfound attention was that the essay was
published on my very last day at National Journal as I was leaving to start
a new job as a staff writer at Roll Call . To boot, I felt like that was the best
way to be an effective voice for autistic people; I didn’t want to continue
dining out on that essay and be seen as “the autistic reporter.” I felt—and
continue to believe—the best way that I could assist autistic people was
to show I was as good of a reporter as my neurotypical counterparts.
As a result, I made it a point that when I began writing my book, which
is still in progress as of February 2019, that I would not just make it into
a personal memoir, but rather that I would rather chronicle the lives of
other autistic people and show how society often creates more obstacles
for autistic people than the actual autism does. Similarly, when I was asked
to write a piece for the Washington Post about how parents teach autistic
boys about consent in sex and relationships, I chose to flip it on its head
and say that it is important to teach autistic people consent because they
deserve to have as fulfilling love lives and sex lives—if they so choose—as
neurotypical people [4].
The more I researched and the more I saw how politicians discussed
autism, the more I felt that while I did not want to become part of the
news and did not want to make myself the story, my own understanding
of autism and my connections to the disability community could allow
 17 Covering the Politics of Neurodiversity: And Myself 237

me to contextualize autism and bring new voices into the public sphere
that would not otherwise have been heard.
Incidentally, one of my first opportunities to bring this perspective to
my reporting came within months of me starting my job at Roll Call
when Democratic nominee Hillary Clinton announced a comprehensive
platform on autism [5].
When Clinton embarked on her second presidential campaign in 2016,
she released a comprehensive set of policies that read like a neurodiversity
wish list like conducting a nationwide survey of autism prevalence in
adults, banning physical and chemical restraints, and creating an Autism
Works Initiative [5]. As someone who had just written an essay about this
a month ago, much of what I read in her policy platform read like things
I had heard advocates dream would happen in our interviews.
Clinton’s own maturation on autism was reflective of how the politics
of autism changed. In a 2007 speech in Sioux City, Iowa Clinton spoke
about being a student at Yale Law School and spending a year at Yale’s
Child Study Center in the 1970s, when autism was still largely blamed on
unloving mothers and told a story about a female friend in Little Rock,
Arkansas whose son had autism.
“And I spent time in her home, I spent time with her and her son and my
instinct perhaps as a mother was that this could not be the explanation,”
she said [6].
As a senator, Clinton introduced her own legislation called the Expand-
ing the Promise for Individuals with Autism Act, a bill that never passed
but was introduced months before her Sioux City speech [7]. In the Sioux
City speech, she talked about helping train educators to handle autistic
students and providing proper services for autistic adults, which is still
groundbreaking by today’s standards.
“With access to the right types of services, including housing, vocational
rehabilitation, we can help adults with autism live rich and full lives,” she
said in the speech [8].
But even with these important steps toward progress, Clinton’s speech
was still couched in the political zeitgeist about autism at the time. In
the sentence before saying there are insufficient services, Clinton said “we
don’t know how to cure it and we don’t even know the best ways to treat
it” [8].
238 E. M. Garcia

Similarly, Clinton credited parents when she said, “driven by their love
and devotion, mothers and fathers across the country have raised aware-
ness, demanded funding, and opened our eyes to the needs of so many
children” [8].
Clinton’s longstanding focus dating back to at least her days in law
school shows her shift in rhetoric from her first to her second presidential
run was not solely for political expediency but which came from listening
to autistic people.
Part of this was fueled by the fact that Clinton had the support of autistic
self-advocates like Ne’eman, who was on the conference call for reporters,
including myself, to announce the roll-out of these policies. He said at the
time “the fact it was requested and the fact many of these priorities come
directly from the community is extremely significant” [9]. While there
were a number of estimable reporters on the line, the fact I am autistic
I felt could give me an advantage. While other reporters wrote a simple
breakdown of the policies, I was able to call autistic self-advocates, who
would be the most affected by these policies and chronicle their varied
reactions. Being autistic and having that institutional knowledge gave me
a roadmap other reporters didn’t necessarily have, without bringing my
own narrative into the story. It showed that I knew which perspectives
mattered the most with these things.
Furthermore, my understanding of autism allowed me to debunk hoaxes
and pseudoscience that arose in the campaign. Then-candidate Don-
ald Trump decried autism as being “an epidemic” during the primary
debates and told a dubious anecdote about a friend’s child becoming
autistic after vaccinations [10]. Similarly, during the campaign, Trump
met with Andrew Wakefield, the discredited former doctor responsible
for promoting the bunk theories of vaccines-autism causation, and Gary
Kompothecras, another major promoter of the anti-vaccine theories [11].
After his election, Trump continued his egregious peddling of vac-
cine theories by promising Robert Kennedy Jr., a prominent anti-vaccine
activist, that he would chair a vaccine safety commission [12].
Thankfully, it appears that Trump has not mentioned the idea fre-
quently and Kennedy told the Guardian that the administration “cut off
all communication with people who care about this issue” [13].
 17 Covering the Politics of Neurodiversity: And Myself 239

But despite backing away from vaccines, Trump has continued to ped-
dle harmful narratives. On April 2, 2017, Trump’s presidential proclama-
tion for World Autism Day read “My Administration is committed to
promoting greater knowledge of [autism spectrum disorders] and encour-
aging innovation that will lead to new treatments and cures for autism”
[14].
Similarly, Trump lit the White House blue, which is emblematic of
Autism Speaks, for Autism Awareness Day, an action that was criticized
because it sees autism as a problem to be fixed and isn’t driven by autis-
tic people themselves [15]. Unlike Clinton’s comments, these came after
better understanding about autism as a condition and after autistic voices
have been heard in the public square.
As an autistic political reporter, this new era where there is a resurgence
of anti-vaccine conspiracy theories and autism is still used as an epithet at
times, often makes me question my place in the autistic community. I am
not and will never claim to be the sole voice for autistic people in political
media. My other autistic peers are more than capable and probably better
at writing about the topic than I am. Similarly, as someone who is now
an editor at The Hill, another congressional trade publication, I feel an
obligation not to pick one side. But it can at times feel maddening when I
feel like the side of autistic people doesn’t even get a chance to say anything,
even those of my autistic brethren who can’t verbally speak.
I don’t really know if I have changed people’s hearts and minds about
autism. At times I worry that I have an inflated view of myself as the guy
who is trying to monopolize “the autism beat” in the Washington press
corps. But for the time being, I see so few figures who have the context,
the understanding and frankly, who care enough to provide those things
to news consumers. How could I, when I speak and regularly interact
with autistic people, not want to ensure others get our narrative correct?
I hope that by both my presence among my colleagues and peers and by
the words I write, I can deliver truths not by protesting or lobbying for
rights, but by changing who people regard as worthy to deliver their news
and ensuring that autistic people are accurately portrayed and their needs
be seen as legitimate.
240 E. M. Garcia

References
1. Silberman, S. (2015). Neurotribes: The legacy of autism and the future of neu-
rodiversity. New York, US: Penguin Books.
2. Garcia, E. (2015, December 4). I’m not broken. The Atlantic. Retrieved from
https://www.theatlantic.com.
3. Autism Speaks. (2015, December 15). Autism Speaks welcomes three new
board members (Press release). Retrieved March 5, 2018, from https://www.
autismspeaks.org/news/news-item/autism-speaks-welcomes-three-new-
board-members.
4. Garcia, E. (2017, April 27). Autistic men don’t always understand consent.
We need to teach them. The Washington Post. Retrieved from https://www.
washingtonpost.com.
5. Clinton, H. (2016, January 6). Autism policy. Retrieved March 4, 2018, from
https://www.hillaryclinton.com/issues/autism.
6. Clinton, H. (2007, November 24). Remarks at the autism event with Sally
Pederson in Sioux City, Lowa (Transcript). Retrieved from https://www.cs.
cmu.edu/~ark/CLIP/candidates/clinton_h/2007.11.24.remarks_at_the_
autism_event_with_sally_pederson_in_sioux_city_iowa-overlay.html.
7. Clinton, H. (2007, March 20). Clinton introduced autism bill to promote
services for those affected by autism (Press release). Retrieved from https://
www.presidency.ucsb.edu/node/297147.
8. Lorentzen, A. (2007, November 25). Clinton would boost autism funding.
The Associated Press. Retrieved from http://www.washingtonpost.com/wp-
dyn/content/article/2007/11/24/AR2007112400924.html.
9. Garcia, E. (2016, January 6). Autism advocates cautiously optimistic on
Clinton proposal. Roll Call. Retrieved from https://www.rollcall.com.
10. Beckwith, R. T. (2015, September 18). Transcript: Read the full text of the
second republican debate. Time Magazine. Retrieved from http://time.com.
11. Kopplin, Z. (2016, November 18). Trump met with prominent anti-vaccine
activists during campaign. Science. Retrieved from http://www.sciencemag.
org.
12. Phillip, A., Sun, L. H., & Bernstein, L. (2017, January 10). Vaccine skeptic
Robert Kennedy Jr. says Trump asked him to lead commission on “vaccine
safety.” The Washington Post. Retrieved from https://www.washingtonpost.
com.
 17 Covering the Politics of Neurodiversity: And Myself 241

13. Smith, D. (2018, February 21). Trump appears to abandon vaccine sceptic
group denounced by scientists. The Guardian. Retrieved from https://www.
theguardian.com.
14. Trump, D. J. (2017, March 31). President Donald J. Trump proclaims
April 2, 2017 as World Autism Awareness Day. Retrieved March 5, 2018,
from https://www.whitehouse.gov/presidential-actions/president-donald-j-
trump-proclaims-april-2-2017-world-autism-awareness-day/.
15. DeJean, A. (2017, April 17). The White House turned blue for “autism
awareness.” That’s actually bad for autistic people. Mother Jones. Retrieved
from https://www.motherjones.com.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
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The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 18
“A Dream Deferred” No Longer: Backstory
of the First Autism and Race Anthology
Morénike Giwa Onaiwu

The way I perceive things, my involvement as one of the editors of the

first-ever anthology on race and autism, All the Weight of Our Dreams: On
Living Racialized Autism [1], was by pure accident.
An extremely fortunate accident that I will eternally be grateful for, but
an accident nonetheless.
The anthology itself was conceived in the mind of Lydia X. Z. Brown,
an Autistic disability rights activist with whom I serve on the Board of
Directors of the Autistic Women and Nonbinary Network (AWN Net-
work, a grassroots Autistic-led nonprofit for gender minorities that was
founded in 2009), and AWN Network enthusiastically agreed to partner
with Lydia to bring the project, announced in summer 2014, to fruition.
Having learned about the idea early in its development, I, like many
others, embraced and helped to promote it. Community support for the
anthology was vital for a variety of reasons—fundraising being one of
them. Though AWN Network had successfully secured a small amount

M. Giwa Onaiwu (B)

Houston, TX, USA

© The Author(s) 2020 243

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_18
244 M. Giwa Onaiwu

of grant funding and sponsorships for the anthology, in order for it to

become a reality a lot more money was going to be needed…and as none
of us had much money, it was clear that we were going to have to rely upon
crowdfunding to obtain the rest. However, to get people to donate, we
knew it was crucial for us to make a convincing case for why this anthology
needed to be published. So in the beginning, when the anthology was just
a creative idea, a lot of the focus was on finding the means to make it
happen. To justify a reason for its existence.
Ultimately, the most compelling reason we could come up with, and
the one that successfully enabled us to reach our $10,000 fundraising goal
in approximately one year ($6712 from 143 different supporters, $2000
from a state Developmental Disabilities Council, $1000 from the Autistic
Self Advocacy Network, and the rest from in-kind donations) was simply
the truth. And that truth is one that Autistic people of color like myself,
Lydia, E. Ashkenazy (a Deaf multiracial Autistic woman who is also one of
the editors of the anthology), and the more than 60 different individuals
who would later become contributors to our anthology share: that the
existing public discourse about autism is glaringly incomplete.
The experiences, stories, and images of people of color on the autism
spectrum are conspicuously absent both in the public view and sadly even
within the sphere of disability. The glaring lack of visibility of people of
color within the disability community which prompted VilissaThompson,
a Black disabled writer and social worker, to coin a phrase that became a
viral hashtag (#DisabilityTooWhite) clearly exists within the autism realm
as well. In fact, it might be an even greater problem.
Sharing that simple yet profound truth over and over was successful.
Our plight resonated with people and they supported us both in word and
in coin. And eventually there was a sufficient amount of money to begin
the actual work of creating the anthology.
Initially, the plan was for Lydia to serve as the Lead Editor of the
project and E. Ashkenazy as Project Manager. However, as a result of
the overwhelming response to the call for submissions (submissions were
pouring in from various countries across the globe), it became apparent
that another member of the primary editorial team would be needed and
I was selected. So although I had not originally planned to be involved
with the anthology beyond providing general external support for the idea,
 18 “A Dream Deferred” No Longer … 245

things changed, and when approached to join the team I happily accepted.
At the time I was not fully aware of the depth of the task we had before us
nor could I grasp its overall significance; I was just excited, but it would
later dawn on me.
We were quite an eclectic team, and we had a lot to learn. We were all
Autistic. We were all people of color: Lydia is East Asian; E. is multiracial;
I am Black. All of us loved to write and had even had some previous work
published, but none of us considered ourselves professional writers. None
of us had an educational nor work background in journalism; none of us
had ever worked for a magazine, book publisher, or newspaper. None of
us had ever been involved in a project quite like this. In addition, we all
had major time constraints due to our busy lives and numerous respon-
sibilities. Lydia was enrolled in law school at the time; E. was running
a professional skating and dance company; I was teaching. E. and I had
eight kids between the two of us. All three of us had various advocacy
commitments we were engaged in that required time and energy, and we
all had different work schedules. Furthermore, we all lived in different
parts of the US: E. lived on the West Coast, Lydia on the East Coast, and
I was in the South.
However, all three of us were devoted to the project and willing to “learn
on the job” and challenge ourselves to make things work. We all possessed
a strong work ethic, an enormous amount of enthusiasm, the ability to
“think outside the box” which helped us to grasp new things quickly, and
the ability to hyperfocus. We had different working styles: one of us was a
planner who liked to make lists and preferred to stay ahead of deadlines;
another was a perfectionist and procrastinator who would have periods
of inactivity/dormancy and then become infused with a creative burst of
energy that enabled rapid completion of a voluminous amount of work
at the very last moment; the other person was a combination of these two
types.
Our differences worked in our favor as we all brought unique strengths
to the team and were able to support one another well if we faltered because
we didn’t all share the same weaknesses. We were united in our belief
in the importance of the anthology and in our respect for one another.
Over the years we maintained regular (sometimes multiple times daily)
communication via email, message, and other electronic means. Together,
246 M. Giwa Onaiwu

along with several other dedicated individuals, we built something real,

something monumental, something beautiful.
From the very beginning, it was important to us that the anthology
remained true to Lydia’s original vision (which was one that we shared). It
was also important that we created something that we believed in and could
be proud of. We realized early on that many established “best practices”
that are utilized in the development of publishing a book of this volume,
while generally helpful and useful for others, were not going to necessarily
work for us. Our process was going to look and feel different in several
ways, and was going to be both non-linear and nontraditional. Because
of this, we weren’t going to have a formal framework, “blueprint”, or set
of instructions that we would be able to rely on. Where there was no
precedent, we had to be ready to trust one another and forge our own
way—and we did.
We developed and agreed upon several guiding principles throughout
the process of birthing the anthology. Some of them include:
Nothing About Us Without Us. Every member of the (lead) editorial
team, which consisted of the three of us, had to be an Autistic person of
color (PoC), and we needed to have full autonomy over our work.
We did allow Autistic people who were not PoC to assist with the project
itself, and many did, including Shain Neumeier and Clare Barber-Stetson
(White Autistic colleagues who assisted with reviewing submissions and
providing feedback on any necessary revisions), Amanda Gaul (White
Autistic colleague who provided legal and financial assistance), Melanie
Yergeau (White Autistic colleague who completed most of the formatting
[along with Tracy Garza who is an Autistic PoC]), and Lori Berkowitz
(White Autistic colleague who provided web and technical support). We
also had a number of White allies in the community help with generating
interest and media attention for the anthology. Solidarity is important,
and we appreciate the efforts made by the many people who supported
this project.
However, it needed to be our project. “Our” meaning Autistic PoC.
Led by us, coordinated by us. Not by White people—no matter how
supportive and like-minded they might be. It was imperative that we did
not perpetuate the false notion that people who do not have the lived
experience of being a PoC are somehow able to effectively represent us.
 18 “A Dream Deferred” No Longer … 247

Every key decision about the anthology had to be made by and approved
by us—period.
In that vein, we strived to have as many Autistic people, and especially
Autistic PoC, involved in various aspects of the project as possible. The
only contributors we accepted for publication were from among those
who identified as Autistic PoC. We also intentionally sought out a graphic
designer who was an Autistic PoC (Finn Gardner) for the cover art of the
anthology. Although not a formal part of the anthology, another Autistic
PoC, Sharon daVanport (AWN Executive Director), provided logistical
support throughout the entire process. Moreover, we set aside funds to
hire an Autistic PoC after the anthology was published to assist with a
social media and marketing campaign.
We welcomed, and still do welcome, any and every person to read the
anthology—regardless of what race they are and whether they are Autistic
or not. It is not something that is only FOR us. But it had to be only BY
us—and only us, and that was non-negotiable.
Everybody Gets Paid was another guiding principle that we felt
strongly about and one that we will never compromise on.
Far too often the labor of marginalized people is minimized and treated
as if it were of little value; meanwhile, those with vastly more privilege
go on to profit enormously from the resources they have derived from
those same seemingly “less valuable” people. Academics and professionals
amass a plethora of publications, enhanced research portfolios, and career
advancements on the backs of stakeholders whose only acknowledgment
is a gift card and a contrived one line “thank you” written in small print at
the end of their abstract or on their last presentation slide (or begrudgingly
acknowledged in public decades later after numerous lawsuits, as in the
case of the family of Henrietta Lacks).
We refused to be like that. We were not going to ask, nor expect Autistic
PoC to contribute to an anthology and not get fair market value for their
work. Marginalized people are frequently expected to possess a sense of
altruism that is not expected of more privileged people; we are guilted into
doing hordes of unpaid work to “help” our people, and/or told that we
are getting “exposure” in lieu of paid wages. Well, you can’t eat exposure.
Your landlord won’t accept exposure in place of a rent payment. Exposure
doesn’t buy diapers and milk. Meanwhile, others are paid for their time
248 M. Giwa Onaiwu

and effort. We respect and value the work of our people and if they could
not get paid then we were not going to go through with the anthology. We
researched market rates to determine what would be fair compensation
and we made sure that every single person—from the contributors to the
formatters to the attorney to the graphic designer, etc.—received payment
for their involvement with the anthology.
We were warned by several external parties that this was not “sound
business practice” and that our decision to do this was not recommended.
We were told that this would not be profitable. We chose to reject their
warnings as we believe in people over profit. Knowing the high rate of
unemployment and underemployment among Autistic adults and the
many challenges our community faces, how could we even conceive of
taking advantage of our own people and cheating them out of what they
deserve?
You Define You was a third guiding principle. Race is complicated and
messy. So is neurology. Although our requirement that all contributors
whose work was accepted for publication had to be Autistic PoC, we were
adamantly against “policing” people’s identities with regard to race and
being Autistic. Phenotype does not always equal genotype; we refused
to define race in a narrow, binary manner. ALL Autistic PoC, including
biracial, multiracial and “White passing but PoC identified” individuals
were welcome.
Additionally, Autistic PoC from any part of the spectrum were included,
regardless of whether a person had a “PDD-NOS” diagnosis, an “Autism
Spectrum Disorder” diagnosis, whether the person had self-diagnosed, etc.
We did not require any of our contributors to have to conjure up “proof ”
that they were enough of this category or that category. You define YOU.
We recognize that many barriers exist for Autistic PoC to obtain formal
diagnoses should they choose to do so and also acknowledge that for some
of our people it is neither advisable nor safe to do so.
For the anthology, we opted to accept the validity of people’s self-
identification as stated.
It’s Not a Term Paper was another guiding principle of ours, and one
that we have found to be somewhat controversial. We made the decision
that we were not going to edit our contributors’ pieces to death. Too
often rigorous, elitist Western standards are applied to PoC, especially
 18 “A Dream Deferred” No Longer … 249

disabled ones, when they are inappropriate for the context. We felt that
this would have been an instance where “standard” editing procedures
would have created more harm than good. Autism is, among other things,
a social communication disability; it is to be expected that there may and
likely are some differences in how things are communicated—and that’s
without taking cultural factors (because all of the contributors are PoC)
into account.
We preferred to prioritize retaining the true essence of what our con-
tributors were trying to say over chopping up and “white-washing” their
words for the purposes of ensuring they had perfect grammar, punctua-
tion, and spelling. Especially since the accepted pieces come from con-
tributors from a range of ages (one as young as five years old!), countries
(including countries where English is not a commonly spoken language),
backgrounds, and levels of schooling (from very little formal education
to graduate school). Unless there was a pressing need to make grammat-
ical corrections, we chose for the most part to capture our contributors’
intended meaning AND original wording as is.
This guiding principle applied to us as well, not just to the contribu-
tors; if you review my own preface to the anthology carefully, you might
see a word repeated twice accidentally. Other places in the anthology you
might find various colloquialisms, ethnic slang, misspellings, etc. Yes, we
saw them all—and yes, we left them there. Humans do not write per-
fectly; why pretend that we do? Why create a written version of a heavily
“PhotoShopped” image that barely looks like the real thing when we have
an opportunity to be authentic in our presentation? For us, there was no
valid reason why and were plenty of reasons not to.
Real Transparency was another guiding principle of ours in putting
together the anthology. We viewed this project as one that belonged to
the community. For before the anthology even had a name, before we
had even a single contributor, when it was just a dream floating around
in the cosmos that we were trying to make tangible…our community
backed us. It was they who provided the bulk of the money for us to pay
everyone involved. It was they who encouraged us when we hit snags in the
process (which happened more than we had anticipated, unfortunately).
It was they who shared with their friends, family, and coworkers about the
anthology that was underway to help us to get buyers.
250 M. Giwa Onaiwu

On our AutismAndRace.com website as well as on social media and

in other places we were open about timelines that we struggled with (not
surprising given that this was a new undertaking for all of us, we are
all Autistic people who struggle with executive functioning, and that we
were juggling this project among a number of other responsibilities). We
were forthright about delays, but also about successes and exciting devel-
opments that occurred along the way. We also regularly expressed our
gratitude for the support and encouragement we were receiving. Good or
bad, promising or disappointing, pretty or ugly…we kept it 100% real
with our followers the whole way through.
We’ve Only Just Begun is probably my very favorite of all of the guiding
principles of our anthology. Before the ink was dry on the first draft
paperback copy of the anthology, we were already making plans for what
we wanted to see happen next. The anthology alone was never intended
to be the “end” of this journey; it was our beginning.
This is NOT in any way to diminish the significance of the anthology. All
the Weight of Our Dreams is the first-ever anthology about and by Autistic
people of color; quite literally, it made history. It was an important start, a
groundbreaking milestone and we remain extremely proud of it. But there
is so much more that we want to do to with and for Autistic people of
color; the anthology helped us to realize that and to begin dreaming yet
again.
It’s hard not to feel heartbroken when you mail a contributor’s copy to
one of the brilliant writers in the anthology—and that copy comes back
to you in the mail undelivered because that writer, that amazing, talented
Autistic PoC, is now homeless. It’s hard not to feel frustrated when you
see yet another link to a fundraiser for an Autistic PoC who has been fired
from their job again due to racism and ableism and now they are struggling
to pay their rent. There are so many stories; there is so much need; there
are so many voices still unheard.
We’ve succeeded in capturing a snapshot of our reality as part of the
global community of Autistic PoC. One of its central themes is an illus-
tration of intersectionality. Not in the way it is frequently misunderstood
and misused, but as Dr. Kimberle Crenshaw, the Black scholar, attorney,
 18 “A Dream Deferred” No Longer … 251

and womanist (among her many honorifics) who is the creator of the term
[2], intended: a way of describing the overlapping effect of existing with
multiple oppressions/marginalizations—like Autistic PoC do. It’s never
“just” autism for us, and it’s never “just” race. Intersectionality, for us,
isn’t an intriguing concept to have philosophical debates about; it’s our
real lives.
And in these real lives, we face unique challenges, but also have unique
strengths. It is our hope to be able to impact individuals as well as our
community in a meaningful way through this anthology. We have already
started to do so, in fact: with a portion of the proceeds we have earned
from sales of the anthology as well as an external grant, in summer 2018
on the one-year anniversary of our anthology’s publication date, we have
launched the first-ever Fund for Community Reparations for Autistic
People of Color’s Interdependence, Survival, and Empowerment (https://
autismandrace.com/autistic-people-of-color-fund/). The fund, which is
operated by AWN Network and managed by the anthology editorial lead-
ership team, provides direct financial support to Autistic people of color
through individual microgrants of amounts between $100 and $500. We
have assisted individuals in purchasing medicine, food, assistive technol-
ogy, educational workshops, housing costs, legal fees, and more.
We also have plans to develop a few special editions of the anthology
in the future, including an audiobook version in as many of our own
voices (for speaking contributors) as possible and a version with full-color
artwork from the anthology. Additionally, we hope to be able to obtain
funding to help support Autistic PoC with scholarships, to help defray the
costs of presenting at conferences, and in other endeavors.
The more that I think about it, my involvement with the anthology
was no true accident. It was supposed to be this way, and everything is
unfolding the way it was designed. Just as I could not foresee becoming
part of it, now I can’t envision a future where I am not a part of this
life-changing project. It isn’t just a book; it’s truly a dream come true that
has the potential to change hearts, change minds, and hopefully continue
to change lives.
252 M. Giwa Onaiwu

References
1. Brown, L. X., Ashkenazy, E., & Giwa Onaiwu, M. (Eds.). (2017). All the
weight of our dreams: On living racialized autism. Lincoln, NE: DragonBee
Press.
2. Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A
black feminist critique of antidiscrimination doctrine, feminist theory and
antiracist politics. University of Chicago Legal Forum, 139, 139–167.

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 Part III
Entering the Establishment?
 19
Changing Paradigms: The Emergence
of the Autism/Neurodiversity Manifesto
Monique Craine

Throughout this chapter, I will be looking at the actions which led to the
development of the Labour Party’s Autism/Neurodiversity Manifesto in
the United Kingdom (U.K.). I will explain where we are currently with the
manifesto and what comes next. I will discuss why I chose the approach
I took and who was helpful in moving the cause forward and I will also
discuss some of the issues and barriers we encountered on our way. I will
also define the terms neurodiversity and neurodivergent but firstly I would
like to briefly introduce myself.

A Bit About Me
I am a fifty-year-old, married, mother of three; I am also a graduate and
am currently in the early stages of launching a new self-employed venture.

M. Craine (B)
Cwmtwrch, UK
e-mail: monique@mccas.co.uk

© The Author(s) 2020 255

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_19
256 M. Craine

Prior to embarking on self-employment (for a second time), I had been

employed in a variety of different job roles as well as having time at home
raising the children; I had worked in everything from waitressing and
sales, to running as a candidate for local elections and getting elected as
a Liberal Democrat Borough Councilor, with all the responsibilities that
go with that.
That’s the positive “sales” version of me. There is another side to me
which has coexisted alongside this resume version of me. During this time
I have battled low self-esteem, severe anxiety attacks, depression, and the
feeling that I just didn’t fit in since I was in my early teens. I left school
with hardly any qualifications, believing I had failed. I was faced with a
career advisor who told me I was officially classed as “less able” and that I
would never be able to gain a standard high school qualification; she told
me I would most likely not be able to continue with education past age
sixteen. I was basically told I was too stupid to ever learn. I was effectively
written off at school.
Back then it was just accepted that I was one of those “slow” children.
I often refer to my eleven years of compulsory schooling as an eleven-year
assault on my self-esteem. I tended to disconnect in class, to allow my
thoughts to focus on other more interesting details. The lessons did not
interest me, and I struggled with basics like spelling and reading aloud. I
knew I was different from the other children, not just in the way I thought
but also in the way I moved, my behaviors, and even in the way I perceived
the world around me.
From the age of five, I learned to mask (to pretend I was just like
everyone else). At school I became selectively mute for a while, as I knew
that if I talked people would call me weird; my solution was simple: “don’t
talk.” I knew that my school work was not as good quality as the children
who sat beside me so from age five I would hide my work so that the
teachers and other pupils didn’t notice my mistakes. I would then spend
hours rewriting it at home so that I wouldn’t be told off. In a way it is
no surprise that I went through school without being diagnosed with any
conditions. I did after all go out of my way to hide all my difficulties from
my teachers.
 19 Changing Paradigms: The Emergence … 257

Late Diagnosis—Diagnosing Difference

Although I was not diagnosed with any conditions as a child, I was finally
diagnosed with Dyslexia and scotopic sensitivity (light sensitivity), in my
late twenties while studying at university. The knowledge I gained about
how my dyslexic brain worked enabled me to stop punishing myself over
the things I couldn’t do and to instead discover new ways to work that
took my different neurology into account.
I found that by adapting the way I worked, I could achieve much
better results than I could while hiding my difficulties. I also found that
I started to appreciate the way my visual memory worked; I had never
realized that there were people who lacked my ability to visualize things.
The way my visual memory works may make it an issue when it comes to
interpreting two-dimensional letters on a page that represent a word, but it
is pretty awesome when you can visualize processes in high definition, slow
motion, and zooming into the detail. Once I realized that many dyslexic
people have this same kind of high-definition visual memory. I realized
that dyslexia gave me something awesome that I would not want to live
without. Although I still struggled with reading and writing consistently,
the simple truth is, I would rather have the amazing visual memory I have
than be able to read and write with ease. Thus I felt proud to be dyslexic;
I accepted I would need to put strategies in place to help me with the
difficulties, but no way would I want to trade it!
I was very positive about being dyslexic even though I do find it a
little embarrassing when my children by age six have found themselves
correcting my reading to them at night.
The simple truth is I have never overcome my dyslexia, I have never
learned to read accurately or consistently but I did learn to read slowly and
repetitively for accuracy. I prefer to use specialist software to read things
to me to ensure I am taking the correct meaning from text but given time,
I can read. I was very positive about being dyslexic and although I still
struggle with reading and writing, I am happy that with the right tech I
can perform certain roles just as quickly as someone who can read and
write fluently and is not dyslexic.
Dyslexia explained a lot in regards to the difficulties I encountered at
school, but it didn’t explain all my difficulties. After receiving my dyslexia
258 M. Craine

diagnosis in 1997 (age 27), I still continued to seek medical support

for my mental health issues. Anxiety was my “natural” state, and my
immune system was so low I would catch everything. I was prescribed
medication for the anxiety but it did nothing for me. I still struggled with
my coordination—I was falling over every day, I was banging myself and
breaking things constantly. I was struggling to maintain relationships that
had meant the world to me for much of my life and I was unable to keep
a job.
In 2012, I was diagnosed with dyspraxia/Developmental Coordination
Disorder (DCD). Finally, I understood where my coordination issues and
problems with movement came from. Again, post-diagnosis, I was able to
create strategies to help me manage some of my difficulties. As before, I
have not overcome being dyspraxic, I still have difficulties daily, but now
that I account for my dyspraxia I suffer with fewer injuries.
It was also around this time I became active on the internet. I wanted
to learn everything there was to learn about the way I functioned so that I
could get my life back on track. Dyspraxia accounted for so much but by
now I knew there was more than just dyspraxia and dyslexia going on, but
I could still get no guidance on how to proceed. In 2013 one of my family
members was put on the autism assessment pathway and once the doctors
realized that there were cases of autism within my family I was able to get
on the pathway for an Autism Spectrum Condition (ASC) assessment.

Blogging and Other Internet Activities

When I first started blogging in 2013 I was still pretty new to my own
diagnoses and I had not yet been diagnosed as autistic. Through my early
blogs I repeated what I had been told by professionals. I used their termi-
nology about the conditions but I focused on the positives. I had a “can
do” attitude and wrote about ways of improving areas we struggled with.
I believed that my dyslexia and DCD/dyspraxia were just down to the
way I was wired. I was always going to have to take my differences into
account but more often than not, the root cause of my difficulties were
social barriers and my own poor mental health as my anxiety was a constant
battle for me. I followed quite a few dyslexia groups on Facebook (FB),
 19 Changing Paradigms: The Emergence … 259

and would post supportive comments on parents’ posts who were asking
for help.
After getting my dyspraxia diagnosis I joined a few FB groups for dys-
praxia too. My favorite group was called “Dyspraxia - Dyspraxic adults
surviving in a non-dyspraxic world” (https://www.facebook.com/groups/
dyspraxiainadulthood). When I joined the group it only had about 400
members and it was very active as the founders had been using the group
as research for their book of the same title.
In this Facebook group, I was meeting people with multiple neurodevel-
opmental diagnoses. Hearing their stories made me realize that my mental
health issues, the burnout, the inertia, depression, and the constant anx-
iety I experienced, could have been brought on by other undiagnosed
co-occurring neurological differences, as opposed to being due to a men-
tal health illness. In the end I started my own blog site where I wrote
strategy guides so I could post them to the group.
It’s worth noting that when I started blogging it was mainly the adult
dyspraxic online community I was talking to. However, I soon realized that
my tips were not just relevant to dyspraxics, but to a lot of other groups too.
The members who had other co-occurring developmental conditions were
sharing my blogs in their other groups and similar feedback was coming
from them. It was when my blog post on “Cleaning Your Home Made
Easy” [1] went viral within the ADHD groups I realized our community
had been segregated by a medical model which insisted on separating us
from our natural peers and mentors.
The feedback I received for my blog surprised me because it had its
biggest success within the ADHD groups. Neurodivergent (ND) adults
were sharing it with “before and after” pictures of their houses. It was
amazing and to this day I still get comments on how it has changed
people’s lives. This is the main reason I started talking to and about the
Neurodivergent community instead of the segregated individual dyslexia,
DCD, ADHD, Autism, etc., online groups. It is why I work toward
unifying all the ND minority groups under one more natural banner.
By 2014 my blogs were really successful among the online ND com-
munities in general. I was a well-known figure in the Dyspraxia (DCD)
groups but my blogs were not going down as well with the autistic groups
260 M. Craine

as they were with other ND groups. I was constantly getting negative feed-
back from autistic individuals. In the main, they loved my content but
were frustrated by my terminology. Some of these people seemed unnec-
essarily aggressive over little things like my using person-first language or
my using pathologized language to describe neurodiversity. They objected
to my saying “person with autism,” and for incorrectly using the term
neurodiversity. A few even trolled me to some extent, posting every time
I used any terms incorrectly. Despite these issues, the autistic individuals
still seemed to like my content and as the general content was being well
received I continued to write my guides and opinion pieces, but if you
read my blogs in chronological order you will see how I slowly became
aware of the issues surrounding the terminology I had used and over time
totally changed the way I wrote about neurodiversity.
Although these autistic people were to some extent trolling me as they
would post comments in every group I belonged to, they were not being
nasty about it. They just felt the need to correct me every time they felt my
terminology ruined an otherwise excellent article. I now consider many
of these people among my best friends and am eternally grateful to those
who first linked me to the work of Nick Walker. As that was the first time
I came across a definition for neurodiversity which I actually understood
and agreed with.

Defining Neurodiversity
Walker explained the history of the Neurodiversity movement, he had
researched the subject in-depth and concluded that:

Neurodiversity is the diversity of human brains and minds – the infinite

variation in neurocognitive functioning within our species. [2]

Walker also describes “how an individual cannot have a neurodiver-

sity. That if someone’s neurology diverges significantly from the typical
majority, the correct term to use for them is neurodivergent.”
 19 Changing Paradigms: The Emergence … 261

Walker’s definition of neurodiversity made sense to me, it showed

that autism, dyslexia, Tourette’s syndrome, and other similar neurolog-
ical developmental conditions were naturally forming variations within
the human species and those of us with those developmental neurological
brain-types were simply neurodivergent. We weren’t broken or wrong, just
different and thus had very different needs from most.
Understanding the terms neurodiversity and neurodivergent myself was
only half the battle. I still had the problem that I wrote in person-first lan-
guage, “person with autism,” and I still used medical language to describe
our differences—in terms of deficits and impairments. It was again the
work of Walker who helped me understand why I struggled to convey a
positive message regarding my own neurology.
In another article written by Nick Walker they state:

When it comes to human neurodiversity, the dominant paradigm in the

world today is what I refer to as the pathology paradigm. The long-term
well-being and empowerment of Autistics and members of other neurolog-
ical minority groups hinges upon our ability to create a paradigm shift – a
shift from the pathology paradigm to the neurodiversity paradigm. Such a
shift must happen internally, within the consciousness of individuals, and
must also be propagated in the cultures in which we live. [3]

In my early blogs I had followed the pathology paradigm, defining our

differences by deficits and impairments. After reading the work of Nick
Walker I got it. The pathology paradigm relied on a medical model, a
system based on our (observable) presenting behaviors and which used a
tick box diagnostic system, depending on whether our issues are mainly
related to one cluster of ND-presenting difficulties or another. Having
become an active member of quite a few online ND groups it seemed
that the “main” diagnosis we got depended on the specialist we were first
sent to in order to have our neurological differences diagnosed. I found
that most of the group members in all the separate, segregated groups had
co-occurring conditions and overlapping qualities. One diagnosis alone
could not seem to define anyone’s particular developmental history or help
them find strategies suitable for their personal profiles.
262 M. Craine

In the UK all developmental ND conditions are usually diagnosed and

assessed by different specialists. Each specialist, be they a psychiatrist, edu-
cational psychologist, speech and language therapist, occupational thera-
pist, or other, assesses each condition in isolation. Their knowledge and
understanding of neurodiversity varies, and as a result we are not often
sent for follow-on assessments for other presenting ND differences.
My mission had been to find out as much as I could about the differ-
ent types of neurological development but I soon discovered that if you
have multiple diagnoses you have to join multiple charities and groups to
gain information relevant to you. I had by this point joined three leading
charities and at least twenty different Facebook groups. I wanted infor-
mation relevant to me in regards to my own dyslexia, dyspraxia/DCD,
and autism which I had now been put on the assessment path for. It’s a
maze just trying to find others who have traveled your path but through
the internet I was finding them, and they were finding me.
I stopped blogging for quite some time after discovering the work of
Nick Walker, as I tried to research more on the topic of neurodiversity and
the many different types of developmental neurodivergent conditions but
it was also around this time I joined Autistic UK (https://autisticuk.org/),
the leading autism organization in the UK that is run by, and for, autistic
people. Autistic UK was engaged in the wider ND movement beyond
autism. Although its main focus was in autistic rights, it was inclusive of
all the other conditions, whereas most organizations would only deal with
the one condition mentioned in their name. Autistic UK would look at the
whole person and the many different ways they might function to ensure
all their human needs were being taken into account. This was the main
reason I wanted to join Autistic UK, as I wanted to find one organization
who were keeping informed about issues affecting all ND groups.
By 2015 I had finally been diagnosed as being on the autism spectrum
myself. I was by now a prominent and active member within many of the
segregated ND online groups, sharing my blogs with each group separately.
My business was not very successful in monetary terms but it was highly
successful for my self-esteem, as I received comments and messages daily
from grateful readers. I had just been shortlisted for the National Diversity
Awards as a Positive Role Model for people with disabilities and it was at
 19 Changing Paradigms: The Emergence … 263

this point that I realized I needed to do more for the communities than
just post top tip guides and opinion pieces on Facebook.

From Dyslexia to Autism—Silencing Voices

Talking about my autism diagnosis had different consequences to talking
about my other ND differences. Autism was being seen differently to the
other neurodevelopmental diagnoses. I had always referred to myself as
being “dyslexic” but when I referred to myself as being “autistic” I was
told off by parents and professionals as they felt it was insulting to put
the condition before the person. Whereas I could talk positively about
dyslexia, when I tried to do the same with autism I was being told that I
was only a “self ”-advocate and was nothing like their child. I was seen as
an inspiration to the dyslexic and dyspraxic community but was shunned
within the autism community despite being popular among the actually
autistic group members.
In my eyes my autism was just a part of my individual brain wiring, no
different from my dyslexia or DCD; it just ticked different boxes. There
were many carers, parents, and others who worked with autistic people
who told me that I had no right to speak on autism because their experience
was of working with or raising autistic children who were also nonverbal
or learning disabled. I received abuse daily from individuals who felt that
I should shut up and not talk about autism positively, as in their view, it
was a disease similar to cancer or diabetes which needed to be eliminated.
I soon discovered how hostile the world is toward autistics and realized
that our voices are often silenced by people whose opinions seem to hold
more weight within society. I also began to realize why the autistic audience
had been so hard to please. They were fed up of being talked over.
I made many friends within the adult autistic online community as
we all banded together to stop the hate. I had discovered that conditions
like ADHD and autism were not seen as favorably as dyslexia, and hardly
anyone had even heard of dyspraxia. Despite all these differences being
natural forms of neurological development, it seemed as though autistics
and ADHDers were being talked over and denied the right to shape their
own futures, while dyspraxics remained invisible.
264 M. Craine

I had a newfound fame within the internet-based ND groups because

of my blogs and I had the ability to reach hundreds of people. I knew I
needed to do something more.

The Role that Shaped My Actions

In 2002 I had been elected to local government as a Liberal Democrat
Councilor and had been able to be part of the process for achieving positive
change, albeit at a local level. I saw firsthand how long projects can take
from conception to completion when they are done properly. During
my time as a councilor, I sat on a number of council committees, and
management boards for a number of external organizations. I worked
with the police and local communities and set up a number of resident
groups. I had gained valuable insight into how to give residents a voice
and I wanted to help get these groups a voice.
I couldn’t help but wonder whether I would have been elected back then
had I known I was autistic and had I disclosed that, but that is a question
for another day. The experience I took with me from having been an equal
and active member of many forums meant I knew how to speak to the
people at the top. Those in political office can really make a difference to
our lives, but by 2015 I had no political allegiance of my own so I felt free
to contact anyone and everyone that I thought would listen, no matter
what party they belonged to.

The Advocates Who Inspired Me

It seemed to me that every day more recently diagnosed dyslexic, dyspraxic,
and autistic adults were turning from using the internet to research their
own neurological profile, to advocating for others who encountered sim-
ilar barriers based on their neurology. From there some are unwittingly
becoming active frontline campaigners for neurodivergent rights. When I
was blogging for the dyslexic and DCD online community I worked with
advocates like Sarah Chapman, owner of Operation Diversity (https://
 19 Changing Paradigms: The Emergence … 265

operationdiversityacademy.co.uk/). Sarah champions neurodivergent tal-

ents and works hard to create a greater awareness of all developmental
neurodivergent differences through her social enterprise.
I also worked with a number of dyspraxic advocates but by far the largest
cohort of advocates was from within the autistic community. This seemed
to me to be because dyslexic adults were allowed to talk about dyslexia
even if they never mentioned any negative sides to it. For example, here
in the UK we have the business leader Sir Richard Branson, who speaks
openly about his dyslexia and how it helped him achieve greatness in his
field. Richard Branson is an inspiration to many dyslexics, but it’s harder to
find autistic people who can talk about their experience of autism without
others who claim to be part of the “autism” community shouting them
down or pointing out that the individual speaking cannot or does not
speak for their children who are in their views more seriously affected.
There seemed to be a barrier to actually autistic people standing up
and talking about the issues of importance to the autistic community. We
were not referred to as autism advocates, but as “self ”-advocates; denied
an opportunity to speak on topics of importance to us; and more often
than not, denied payment for delivering talks. There seemed to be two
communities at odds with each other where the autism community spoke
over the voices of the actually autistic community. This injustice meant that
autistic life coaches, bloggers, and advocates were used to being dismissed
and at times attacked simply on the grounds of their autism being different
to someone else’s, but there were also more serious issues affecting the
autistic community.
Through my online work I was introduced to individuals like
Emma Dalmayne, the founder of Autistic Inclusive Meets (https://
autisticinclusivemeets.com/), who has taken on the battle against quack
“cures” from individuals who claim they can help children “recover” from,
or be completely “cured” of their autism. These people pray on vulnerable
parents who do not understand autism and expose the autistic children
and adults to abusive practices, such as drinking bleach in the form of
MMS. Emma Dalmayne has led the fight to introduce specific legislation
to prevent these types of abusive practices from being sold and used in the
UK. Working with individuals like Emma also inspired me to do more
than just blog.
266 M. Craine

Internet-based groups like The Autistic Cooperative founded by Kieran

Rose (www.theautisticadvocate.com) have links with autistic campaigners
based all around the world. Neurodivergent community members are now
finding each other through groups like this, supporting and teaching each
other about how to campaign more effectively.
Many of these groups were being formed by autistic campaigners who
were also multiply ND, so they were inclusive of members with other
related conditions. A network of community leaders was forming on the
internet where group leaders were trying to allow neurodivergent voices a
safe space to talk. I saw and heard of many injustices through these groups,
so I wanted to do something positive. Belonging to all the different ND
groups guided my hand regarding how to take my activism out into the
real world. I was focused on doing something that would have lasting
positive effects for all our people so listening to who group members were
talking about was essential to me.
In September of 2015, there had been a shuffle in leadership in the
political parties and suddenly many in the ND groups were talking about
wanting to reach out to one person. That person was Jeremy Corbyn
Member of Parliament (MP), the newly elected Leader of the Labour
Party (then and at the time of writing in early 2019, the main opposition
party in the UK). In the autumn of 2015 individuals from all the ND
groups were talking about how Corbyn seemed different, how if anyone
was going to understand our plight it would be him. This intrigued me as
it was coming from people who claimed to have lost faith in our political
system, from supporters of other political parties as well as from Labour
supporters. Jeremy Corbyn seemed to be appealing to many within the
different ND communities, because he seemed to be approaching politics
differently, so I addressed an open letter to him.
In the open letter I spoke about the emergence of an online-based
neurodivergent community and stated that:

Although we are isolated within our geographical communities we have

found others like us and formed huge communities on the internet. We gain
support from each other and find ways to overcome hurdles together. [4]
 19 Changing Paradigms: The Emergence … 267

I congratulated Jeremy Corbyn for his appointment of a Shadow Min-

ister for Mental Health and asked:

Jeremy Corbyn, you have created a Minister for Mental Health and I
applaud you for that, it truly is an immensely important post in this era.
Can we ask that you also consider appointing a Minister for Neuro-
Diversity to work closely with the Minister for Mental Health? We are
in need of political representation. [4]

An open letter signed by just one person is just a letter, from one person.
I wanted to ensure I had the message right and that each of the different
ND communities backed my call for the creation for a Shadow Minister
for Neurodiversity.
The open letter received hundreds of comments in support in every
ND group I shared it in. The ND community then seemed to take own-
ership of it and started sharing and retweeting it to their own contacts. It
wasn’t long before the letter had gone viral. I wanted as many comments
as possible from members of the different neurodivergent communities
before sending it to Jeremy Corbyn MP. It was essential to me that he sees
it was the community speaking and not just me.
Between publishing the letter, coming out that I was autistic, my own
general incompetence at promoting my paid work, the exploitative nature
of the autism world, and my focus having turned to campaigning, I had
not been able to make a success of my business.
I felt as though I was being forced to close my business because I
could not make enough money, yet I was regularly being asked to attend
autism events and speak for free. I remember posting something on my
personal Facebook feed about how I was fed up of not having my time
valued and how I would no longer support charities and organizations
who claimed Autism in their title but who did not value our time enough
to pay us.
268 M. Craine

The Butterfly Effect: Reaching the Right

Person
A Facebook friend commented on my post, saying I should meet her
friend Janine Booth as she thought we had a lot in common. At this time
I was still not very good at introducing myself to new people through the
internet; my Facebook account was only used for my real-life family and
friends. Yet I was already aware of Janine, having preordered her book
“Autism Equality in the Workplace: Removing Barriers and Challenging
Discrimination” [5]. I had also seen her website and enjoyed some of her
poetry.
Janine was to my mind someone of note in the autistic community,
she was a well-known author, activist, and campaigner whereas I was just
a new internet blogger. I decided to private message Janine to introduce
myself. I attached a copy of the open letter I had published so she knew a
little about my own work and aspirations in the field.
Janine got straight back to me and asked that I forward the open letter
to the Shadow Chancellor of the Exchequer, John McDonnell MP, as she
felt he would be genuinely interested. The Shadow Chancellor is the direct
opposition to the Government-appointed Chancellor of the Exchequer,
the person responsible for the country’s treasury. Although not currently
in power having someone of this position on our side seemed essential if
we wanted to move forward, I did as Janine suggested.
McDonnell responded to me, genuinely inquiring more about the
request I had made in the open letter: the creation of a Shadow Minister
for Neurodiversity. From there things moved very quickly. I was invited
to meet John McDonnell at Portcullis House, in London to discuss my
proposal further but because of my issues traveling I was not able to meet
with him immediately. In the meantime Janine Booth had a book launch
which John McDonnell was attending and after she asked him if he would
support creating an autism manifesto, he announced his support for the
creation of a Minister for Neurodiversity and an Autism Manifesto [6].
I was blown away by the announcement and was excited that I would
soon be meeting with John McDonnell MP to discuss progressing matters.
To be able to attend a meeting in London I needed my daughter to be my
travel buddy. I had also asked Janine to come with me to the meeting for
 19 Changing Paradigms: The Emergence … 269

two reasons: one was because I was eternally grateful that she had pointed
me in the direction of John McDonnell and secondly because I was scared
to go in a building where I knew no one (although I had not physically
met Janine by now we had corresponded a lot and I felt familiar with her).

Conceptualizing an Inclusive Manifesto—The

Meeting
Our communal friend was right—we were certainly both on the same page;
our responses to the questions from John McDonnell seemed to be exactly
the same. During the meeting we discussed many areas of discrimination
for the different ND communities we were attempting to represent. John
McDonnell asked many questions. What he seemed to want to know was
whether a Ministry for Neurodiversity would be enough to achieve the
changes all the ND communities needed and whether an autism manifesto
alone would be inclusive of all ND groups.
After talking about a variety of different issues in some depth we agreed
that in reality much more was needed. We needed to combine my idea
with Janine’s and work toward achieving the best outcomes for all groups.
We discussed how Government policies affect members of the ND com-
munity in every aspect of their lives, from health and education to housing,
employment, and the judiciary system. By the time the meeting had come
to a close, McDonnell had tasked Janine and myself to put together a team
of ND individuals to start working on a fully inclusive manifesto to come
back and put before him. McDonnell not only supported the “Nothing
About Us Without Us” principle we desired, he put it front and center.

The Creation of the Manifesto—Steering

Group Actions
Janine and I then put together the Labour Party Autism/Neurodiversity
(LPA/ND) Manifesto Steering Group, made up of ND activists, advo-
cates, academics, and campaigners. Our remit was to go to all the ND
270 M. Craine

communities and with the communities’ help, design a truly inclusive

manifesto to present back to McDonnell.
Over the next few months we worked together to design a manifesto
which was felt could bring about the kind of structural changes needed
to create a more ND inclusive society. The Steering Group launched the
LPA/ND draft manifesto in September 2016, at a fringe event of the
Labour Party Annual Conference. McDonnell attended this event and
spoke about how he was supporting the creation of the LPA/ND mani-
festo. He also spoke about how he had first been introduced to the world
of autism through his constituency work, and about how he had been
challenged by Janine Booth to do something about autism in regards to
the workplace at a trade union event he had attended some years ago. My
impression was that McDonnell had been thrust into the autism world
through his political work long before my open letter arrived in his inbox.
You can view John McDonnell’s speech online [7].
Austin Harney (LPA/ND steering group secretary), spoke about his
own lived experience of autism and why he was fully supportive of the
manifesto. He stated:

When I received the diagnosis, the authorities recommended that I was

taken away from mainstream education against my wishes. The top profes-
sional medical experts stated that I had sub – normal intelligence that was
unfit for mainstream society, education and employment. I was sent to an
Autistic compound. [8]

Austin, like so many of us, was able to prove these doctors wrong and
is now a civil servant as well as being a member of the national executive
committee for its trade union, PCS (Public and Commercial Services)
Union.
Janine Booth spoke of the impact Neurodiversity training was having
in the workplace, how it was showing real benefits, not just to the ND staff
but to other staff and clients too. She then outlined the core principles:
the social model of disability, the neurodiversity approach, opposition
to austerity, socialism, democracy, solidarity, and the Nothing About Us
Without Us principles which had helped us construct the document we
 19 Changing Paradigms: The Emergence … 271

were setting out before the delegates. She then outlined the document in
full [9].
After the launch, we created a Facebook Page (https://m.facebook.com/
LPANDmanifesto/) so that the segregated online communities could add
their input easily through their Facebook accounts. Janine ran Neurodi-
versity training events and we attended meetings and ND events, so that
we could between us all obtain more feedback from the many varied,
segregated ND communities.
Joseph Redford had been involved in setting up or running many autis-
tic community-building events prior to joining the LPA/ND Manifesto
group. He had worked with Autscape, an event run for and by autistic
people. Joseph had also worked on Autistic Pride in Hyde Park, an event
which started in London and which in 2018 saw autistic people and their
families attend Autistic Pride events in cities all over the country. Joseph
was able to take the Manifesto and gather valuable feedback from many
within the autistic community through these activities and events.
Annie Morris facilitated all our meetings and also set up and mon-
itored the Neurodiversity Manifesto Website for the group (https://
neurodiversitymanifesto.com). We also were lucky to have noted aca-
demics available to the steering group. Dr. Damian Milton and Dr. Dinah
Murray were able to help us research any controversial issues in more depth.
In 2017 the steering group was in the process of gathering feedback to
ensure all issues had been considered in the draft document. We wanted
to ensure we had not left any groups unrepresented and we wanted to do
a good job. We were not due for a General Election in the UK until 2020
and we wanted to produce a document that was well-thought-out so the
Labour Party would have no problems adopting it before the next General
Election. But this all coincided with massive political change taking place
in the UK as the vote to leave Europe had taken place in 2016 and the
political landscape was changing. The Conservative Government changed
its leadership and Theresa May was appointed the new Prime Minister. In
June 2017 a snap General Election was called and we again found ourselves
at the ballot boxes.
When the election was called the steering group collated all the infor-
mation we had gathered. The draft manifesto was then adapted and sub-
mitted to McDonnell just before the official Labour Manifesto was itself
272 M. Craine

published. All of us on the LPA/ND Manifesto steering group knew there

was no time to have the full manifesto included in time for that election,
but as McDonnell had seemed to understand our issues and had attended
steering group meetings when he could, we hoped that some of our more
general aims would have been brought up.
The official Labour Party Manifesto 2017, “For The Many Not The
Few” [10], included some of the core principles requested in the draft
A/ND manifesto. The Labour Party Manifesto made it clear that the
Labour Party desired an autism-friendly UK, that they wanted to imple-
ment the social model of disability, and look to resolve disability issues
created by lack of accommodations rather than expecting the change to
come from the disabled person. It even mentioned neurodiversity.
In September 2017 we were ready to host the Autism/Neurodiversity
event at the Labour Party Conference. A copy of the drafted manifesto
was left on all the delegates chairs so they could refer to it throughout. A
copy of this can be found online [11].
I Chaired this event, and had the pleasure of introducing McDonnell,
who this time spoke of how proud he was of the work Janine and the
whole of the steering group had put into creating the Manifesto and again
stated his full support for it.
Emma Lewell-Buck MP, the only openly dyspraxic Member of Parlia-
ment then spoke about what it is like being a dyspraxic politician. Other
politicians and members of the steering committee also spoke about how
the Autism/Neurodiversity Manifesto would impact the different ND
groups and how that could benefit society.
We had talks by dyslexics, autistics, dyspraxics, and a very vivid and
powerful talk by Terry Laverty, a core member of the Steering Group, who
spoke on the topic of ADHD. Terry spoke about what it is like having a
mind that works so differently to most and the discrimination faced by
ADHD adults.
The event was very well attended and support for the manifesto was
unanimous. One of the comments from the delegates which stuck with
me was that they had never been in a room with so many neurodivergent
people in one place. It really was an amazing feeling to be in a room full
of our actual peers.
 19 Changing Paradigms: The Emergence … 273

Where We Are Now—The Present

In 2018 we ran another successful conference where we introduced our

critical appendix on Applied Behavioral Analysis (ABA) which was also
incredibly well received [12]. Shortly later Janine and myself reported back
to John McDonnell MP, to present the final manifesto to him in detail
[13]. John McDonnell fully supports the manifesto and is keen to see the
whole document officially adopted by the Labour Party and has explained
how we can now go through the right channels to get it approved by the
National Executive.

Launch of Neurodivergent Labour

I learned through my time as a borough councilor that all projects take
time: there is no guarantee that just because you start a project, you will still
be there when it is approaching completion. Therefore, the best projects
are the ones you can walk away from knowing that you have already got
the ball rolling in the right direction.
I feel proud to know that if I walked away soon I would have left behind
me a democratically formed organization who have pledged to promote
the A/ND manifesto and to fight for the rights of neurodivergent people.
I have faith in this organization being a force for positive change.
On February 9, 2019, I saw politics on the brink of a paradigm shift
as it opened the door to neurodivergent voices. John McDonnell again
spoke of his support for the work we had done and the ambitions we had
to make the Party more accessible to us. As the Disability News Service
later reported, John McDonnell said:

As I keep repeating, this is not about electing a group of MPs who will go
off and do it for us. That will never work, it never has and it never will. This
is about when we go into government, we all go into government, so we
draft our manifesto, we secure commitments from the bulk of the Labour
Party through the normal policy making process and then when we go into
government, we all work on the detail of the implementation itself. [14]
274 M. Craine

Hearing McDonnell speak filled me with confidence. Knowing that it

is no longer just individual voices trying to be heard, but a movement of
people who are uniting under the Neurodivergent banner.
I am eternally grateful that my open letter to Jeremy Corbyn, MP, fell
into the hands of Janine Booth. I’m so glad she had the political awareness
to make it much bigger than it was, by getting it to the best person to
read it, and for pushing for a manifesto. I am eternally grateful to John
McDonnell for understanding the need to create a ND inclusive manifesto
so we can all be supported, and for allowing us, the ND individuals, to
lead throughout the process of inception, construction, and delivery.
I hope that other ND advocates are writing to people they think might
help. Despite the internet trolls we have to contend with, there are actually
a lot of good people out there and there are some amazing allies still to
be made. It is amazing what a simple letter can lead to. My aim was to
start a ball rolling, to start something that I could eventually walk away
from knowing that the momentum alone would keep it going. I wanted
to start a conversation that included us at all levels. What I hadn’t realized
at the time, was that hundreds of ND advocates are out there doing the
exact same thing. One person at a time, perspectives are changing, and
paradigms are shifting. As more and more advocates find each other and
work together our voices are getting heard.

References
1. Craine, M. (2014, July 5). Cleaning your home—Made easy (Web
log post). Retrieved from http://needtosay.weebly.com/blog/cleaning-your-
home-made-easy.
2. Walker, N. (2014, September 27). Neurodiversity: Some basic terms & defi-
nitions (Web log post). Retrieved from http://neurocosmopolitanism.com/
neurodiversity-some-basic-terms-definitions.
3. Walker, N. (2013, August 16). Throw away the master’s tools: Liberating
ourselves from the pathology paradigm (Web log post). Retrieved from http://
neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-
ourselves-from-the-pathology-paradigm.
 19 Changing Paradigms: The Emergence … 275

4. Craine, M. (2015, September 16). An open letter to Jeremy Corbyn (Web log
post). Retrieved from http://needtosay.weebly.com/blog/an-open-letter-to-
jeremy-corbyn.
5. Booth, J. (2016). Autism equality in the workplace: Removing barriers and
challenging discrimination. Philadelphia, PA: Jessica Kingsley Publishers.
6. Weaver, M. (2016, May 31). Labour to appoint a shadow minister for neu-
rodiversity. The Guardian. Retrieved from https://www.theguardian.com.
7. McDonnell, J. (2016, September). LPA/ND launch speech [Video file].
Retrieved from https://videopress.com/v/5C8MnEvD.
8. Harney, A. (2017, June 3). A post from Austin Harney (Web log
post). Retrieved from https://neurodiversitymanifesto.com/2017/06/06/a-
post-from-austin-harney-a-member-of-this-steering-group.
9. Neurodiversity Manifesto. (2016, September 22) Neurodiversity man-
ifesto: Labour Party launch (Manifesto). Retrieved from https://
neurodiversitymanifesto.com/2016/09/22/neurodiversity-manifesto-
labour-party-launch.
10. Labour Party. (2017). For the many not the few (Manifesto).
Retrieved from https://labour.org.uk/wp-content/uploads/2017/10/labour-
manifesto-2017.pdf.
11. Labour Party Autism/Neurodiversity Manifesto Steering Group. (2017,
September 15). The Labour Party Autism/Neurodiversity Manifesto (V.2, 2017)
(Manifesto). Retrieved from https://neurodiversitymanifesto.com/2017/09/
15/the-labour-party-autism-neurodiversity-manifesto-v-2-2017.
12. Milton, D. (2018, September 15). A critique of the use of Applied Behavioural
Analysis (ABA): On behalf of the Labour Party Autism/Neurodiversity
Manifesto Steering Group (Manifesto appendix). Retrieved from
https://neurodiversitymanifesto.com/2018/09/15/labour-party-autism-
neurodiversity-manifesto-2018-please-see-our-final-draft-on-page-3.
13. Labour Party Autism/Neurodiversity Manifesto Steering Group. (2018,
September 18). Labour Party Autism/Neurodiversity Manifesto: Final draft
version (Manifesto). Retrieved from https://neurodiversitymanifesto.com/
2018/09/18/labour-party-autism-neurodiversity-manifesto-final-draft-
version-2018.
14. Pring, J. (2019, February 14). Launch of Neurodivergent Labour ‘could be
milestone in fight for rights and equality’. Disability News Service. Retrieved
from https://www.disabilitynewsservice.com.
276 M. Craine

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 20
From Protest to Taskforce
Dinah Murray

The National Autistic Taskforce’s (NAT) main focus is on autonomy and

justice for people who don’t use speech to meet their needs; that was also
the main focus of the APANA story, and that is where the next stage of
this narrative starts, as one of its key players is Virginia Bovell who was
on the parliamentary advisory group that learnt about neuroleptics from
Wen Lawson and myself. This section is about how the NAT came to be
and what lessons can be learnt.

Autistic Influence on the Emergence

of Autistica
At that All-Party Parliamentary Group on Autism (APPGA) meeting men-
tioned above, and after it, my concession that in some cases at low doses

D. Murray (B)
London, UK

© The Author(s) 2020 277

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_20
278 D. Murray

some people find risperidone helpful was clearly a vital step towards cred-
ibility (though not liked by the APANA parents at the time). Virginia,
founder of an applied behavioral analysis (ABA) school and achiever of
British version nicey-nice ABA, was also concerned about eugenics, so a
while later we met again to talk about that and I met her son Danny.
Some years passed, then one day in 2008 she and I did a double take in
the street and she asked me in for a cuppa (tea). We had a very pleasant
chat and exchanged phone numbers. Despite our very different views of
behaviourism, we had much common ground.
Just a week later I got a very disturbed phone call from Virginia. A new
CEO of her school (Treehouse), unaware of their bad name had invited
Bob Wright, founder of Autism Speaks, to launch a new series of annual
lectures on autism. To many people it was already clear how distorted their
deeply medical model of autism was, with its analogy to cancer as a problem
to be wiped out as soon as possible, including by genetic intervention. So
Treehouse needed help and we built on our common ground despite a
difference of view that could have ruled that out.
The solution I proposed was to: establish a creative autistic presence; give
autistic people a chance to say what people most need to hear about autism;
have the widest possible exposure; rebalance the specific event to dimin-
ish Autism Speaks’ impact. This created alliances and generated obliga-
tions. Treehouse gave me funding for a professional editor, for two-minute
videos from the Autistic Self Advocacy Network (ASAN), members of my
Posautive Youtube group, and Autscape (see Buckle, Chapter 8) members
as well as from personal contacts.Two thousand Something About Us DVDs
(Something About Us [1] were made and distributed—free and copyright-
free (now part of the exhibition at RightfulLives, www.rightfullives.net/
Community-of-Perspectives.html). At the event in London’s City Hall,
everyone including the visiting Wrights was asked to flap not clap. An
autistic woman, Anya Ustaswewski, cogently responded, and an audience
with many invited autistic people (see the videos at RightfulLives). There
was a small demo outside with these signs (see Figs. 20.1 and 20.2).
Another result was that people were indebted to the autistic input and
Virginia introduced me to key people who recognized the debt (I was not
paid myself ). Those included Hilary Gilfoy of whom more below.
 20 From Protest to Taskforce 279

Fig. 20.1 Anti-Autism Speaks Logo designed by Dinah Murray

Fig. 20.2 Another Anti-Autism Speaks Logo circulating in 2008, anonymous

This event strengthened my standing as a reasonable person (not all may

agree) again because I had conceded some ground myself, i.e. that the UK
behaviorists were not themselves devil’s spawn. The whole ghastly visit—
perhaps with a bit of help from our well-found critique—contributed to a
painful and difficult process as the UK organization that had been paired
with the US Autism Speaks severed the partnership and reinvented itself
as the strictly British Autistica (which now has a Director of Science who
is autistic himself ). I kept up good relations with Hilary Gilfoy in person
280 D. Murray

over the next years as she seemed to me a fair-minded person who was
going to some lengths to distance and separate her organization—funded
by Dame Stephanie (Steve) Shirley in the UK—from the Americans.

Autistic Input into the National Autism

Project
A few more years passed and in 2014, Dame Steve, who had used her
unexpected great wealth (see her autobiography, Let It Go [2]) to give
very many millions of pounds toward fathoming what autism is all about,
decided to commission the “National Autism Project” (NAP) to study
whether anything useful had emerged from all these decades of autism
practice and research, much of it funded by her.
Thus, in 2015 Ian Ragan and Elizabeth Vallance (from the original
Autism Speaks UK) approached me to join the NAP Strategy Board. I felt
honored, but it mattered to me that if I said yes I wouldn’t just be there
as “window dressing.” As I explained, my experience as a trophy autistic
person at the National Autistic Society had been recent and bruising. I also
did some agonizing over the generous benefactor’s past involvement with
Autism Speaks and her own attitude to autism; but she had funded the first
online autism conference, in 1999, to which I’d contributed with Mike
Lesser and the Webautism course which I helped develop and taught on
at Birmingham University—and Autistica was being transformed. Also,
they agreed to everything I asked for.
I asked for: communication support for attending Board meetings (in
the shape of Damian Milton), as I knew my ability to speak up in a
timely manner was limited at best; I was also concerned that I needed my
own ‘sounding board’ and input from beyond my own limited perspective.
Happily both these ideas were accepted and I constructed a strong advisory
panel with a wide range of both academic and practical knowhow, and I was
able to come to Strategy Board meetings with the unfailingly articulate
(and like-minded) Damian. Hilary Gilfoy, who had guided Autistica’s
disentanglement from Autism Speaks, was not technically on the Board,
but took excellent minutes at Board meetings and was perceived as a
 20 From Protest to Taskforce 281

supportive presence by both Damian and myself (and, I think, by her old
friend Dame Steve) owing to her calm friendliness.
Having someone as steady as Damian by my side, who also had a
fantastic grasp of all the key issues, transformed my capacity to be of some
use at the meetings. Eventually everyone was treating us both as equal
Board members, and he was contributing freely on the spot in a way I
cannot perform myself. There were few occasions when our views diverged,
which obviously helped—and at the final Board meeting Damian couldn’t
attend and I managed to contribute quite fluently myself as I had learnt
to trust the people there. How did that happen?
It didn’t start too well. A lot of work had been done and decisions taken
before the first Board meeting took place—that included drawing up a
list of Experts, all of them professionals from academics to psychiatrists to
charity bods. I queried why the Autistic Advisory Panel (AAP), who I knew
to be deeply knowledgeable in the field, did not also count as “experts.”
I went and met and talked to the report researchers Professor Knapp and
postgraduate Valentina Iemmi quite early on, and I think opened their eyes
to how much disability can be created by a hostile environment and what
that might mean vis-à-vis autism. They appeared genuinely interested.
Even so, by the summer of 2015 I was beginning to think of resigning
because of the way the AAP members were lumped together as “Dinah’s
panel” and their individual great expertise disregarded. However, Damian,
AAP member Catriona Stewart, and I had a chat at Autscape and Catriona
argued for the Panel to have a face-to-face meeting, which we later did,
with the NAP Project Leader, the NAP Chair, and Hilary in attendance.
That was the beginning of the real listening.
Gradually all the people on the Panel became distinct and valued con-
tributors to the NAP. The interesting and open-minded other members
of the Strategy Board began to hear favorable things about us. Two of
the AAP members were turned from pawns to queens and added to the
Experts list—Drs Yo Dunn and Catriona Stewart. Cat was their Scot-
tish specialist and Yo was far the most effective and knowledgeable expert
they had when it came to calling the Government out on its own laws.
In effect she became the NAP’s warhead, wheeled into many discussions
with senior civil servants to blow them away with her detailed and accurate
legal knowledge.
282 D. Murray

By the time the Project report, The Autism Dividend , was launched
in early 2017, the large contribution of members of the Panel as well as
our “experts” was being explicitly recognized. The report was repeatedly
revised and improved by our critical input—and saved from some seri-
ous failings—which resulted in Damian and myself being honored at the
report launch in a House of Lords venue, as “Productive Irritants” by its
lead author, Martin Knapp. Some fundamental differences from his ear-
lier report on “the cost of autism” were that the burden/disease concept
had been replaced by explicit recognition of autistic potential and of the
varied barriers that prevent it from being realized; it also highlighted a very
poor evidence base for most practice, resulting from widespread very low
research standards (see autistic researcher Michelle Dawson on Twitter,
@autismcrisis, for much more about those).
At that year’s Autscape (see Buckle, Chapter 8), five members of the
AAP were there, and the National Autism Project’s willingness to listen
and take us seriously was feted and rejoiced in: the final report is much
admired. We are all proud to have contributed to its excellence. Widely
seen as the highlight of the 2017 Autscape, Yo Dunn gave a stunning,
passionate talk about what she called “The Other Half ” and what is more
fluent autistic people can and should do about the vast numbers of autistic
people who are not articulate but depend on frequent or full-time support.
Privately we discussed the idea that if some sort of future for the AAP was
going to emerge, its point could be to focus on the Other Half.
In parallel with these discussions, unknown to us, Dame Steve was
having some thoughts of her own. Those led her to entrust me with the
generous sum of £100,000 to fund a continuation and transformation of
the NAP’s AAP. She was clearly pleased we chose to focus on people, like
her late son, Giles, who need the most communication support. The new
body was named the NAT and acquired the strapline: Bolder Voices—
Better Practice.

The National Autistic Taskforce

With Damian Milton as project leader, we conceived the Taskforce’s main
practical aim to be to turn more of the promises encoded in weak and
 20 From Protest to Taskforce 283

toothless legislation into realities, for people who are poorly placed even
to recognize let alone defend their own rights and interests and whose
parents are often cut out of discussions when their offspring are teenagers.
We are identifying specific targets and crucial steps along the way, as
well as potential obstacles and ways to get around them. We have small
focused working groups (GNATs, or Groups of the NAT) on changing
practice in the target areas. We are also building up a wider network of
autistic individuals and groups across the British Isles so we can draw on a
wide range of expertise with as broad and well-informed views as possible.
Thanks to this terrific bunch of committed and knowledgeable people, we
have been already able to interact constructively with agents of government
and other stakeholders, and thanks to Yo Dunn in particular, the Taskforce
has drafted several well-supported and closely argued responses to relevant
government consultations on behalf of NAT (see nationalautistictaskforce.
org) and created the NAT Independent Guide [3].
We think we are well-placed to be seen as carrying some weight, with an
executive made up of Kabie Brook, Leneh Buckle, Yo Dunn, and Damian
Milton as project leader; and the NAT’s history and status mean we have
some enviable introductions and contacts. We think our connection with
the National Autism Project means that, from an establishment position,
we are seen from the start as both credible and significant. Big charities
that say they are speaking for autistic people always have their own survival
as top priority.

Lessons Learned
What lessons can we learn from this narrative, stretching from the mid-
90s to the present day? The process involved creating, discovering, and
using community of interest—i.e. shared values and passions—among
a diverse range of people whose interests and views outside our specific
common purposes often differed widely. Working alongside other autistic
people may take quite a lot of additional work (by all concerned) to ensure
that communication is effective and perceptions of all sorts are factored
in, allowed for and not seen as insuperable barriers, even if there’s some
284 D. Murray

potentially painful cognitive dissonance. That said, having autistic com-

rades along when entering any lions’ dens can in my experience make all
the difference between being able or not able to communicate effectively.
Our impact partly depends on pragmatic adaptation, but our strongest
suit is being people with the passion and commitment and indifference
to hierarchy to persevere obstinately against the odds. Be an opportunity
hound, don’t miss a chance!
I have always made a point of assuming everyone has a good heart,
as Kabie Brook of Autism Rights Group Highlands (ARGH) recently
pointed out to me in relation to the NAT—only once or twice has this
precept let me down. In every campaign I found that goodwill, fellow
feeling, and knowhow were freely shared, and personal connections were
crucial. Expecting and also returning tolerance, understanding, and accep-
tance from others has worked well to further aims. I found it’s best to
expect mistakes, delays, miscommunications, so as not be “thrown” by
these: they are inevitable and it is usually pointless or harmful to attach
blame (of self or others) to any of them. If at all possible, stay polite, work
on the common ground and remember that though changing practices
and attitudes can take decades, lots of small changes really can add up to
big ones.
On a more cynical note, remember that when reputations are at stake
the power imbalance shifts if those with least power have a voice that can
be heard. That’s why digital inclusion is so vital and a strategic goal of the
NAT. On we go.

References
1. Murray, D., & Benstock, J. (2008). Something about us [Documentary].
2. Shirley, S., & Askwith, R. (2012). Let it go: The memoirs of Dame Stephanie
Shirley. UK: Andrews UK Limited.
3. National Autistic Taskforce (NAT). (2019). An independent guide to qual-
ity care for autistic people. https://nationalautistictaskforce.org.uk/wp-content/
uploads/RC791_NAT_Guide_to_Quality_Online.pdf.
 20 From Protest to Taskforce 285

Open Access This chapter is licensed under the terms of the Creative Commons
Attribution 4.0 International License (http://creativecommons.org/licenses/by/
4.0/), which permits use, sharing, adaptation, distribution and reproduction in
any medium or format, as long as you give appropriate credit to the original
author(s) and the source, provide a link to the Creative Commons license and
indicate if changes were made.
The images or other third party material in this chapter are included in the
chapter’s Creative Commons license, unless indicated otherwise in a credit line
to the material. If material is not included in the chapter’s Creative Commons
license and your intended use is not permitted by statutory regulation or exceeds
the permitted use, you will need to obtain permission directly from the copyright
holder.
 21
Critiques of the Neurodiversity Movement
Ginny Russell

Preamble
I am going to recount some of the main reproaches to the movement,
as I understand them, and show how these are sometimes answered or
addressed by our contributors.This does not claim to be a “comprehensive”
account of critiques, as my knowledge of the movement is incomplete, and
like others’ understandings, my writing is situated by and limited by my
own reading and experiences [1]. Nevertheless, I believe it is important to
be aware of critiques, to engage with criticism, and openly debate, defend,
or modify one’s position, in both the political and academic spheres.
The start of my chapter concerns critiques that apply to identity poli-
tics more broadly: that they dichotomize allied groups into factions (this
prevents smaller identity groups from linking up, causing rivalries and
discord). Sociologist Charles Derber asserts that identity politics does not
include a broad critique of the political economy of capitalism, instead

G. Russell (B)
College of Medicine and Health/College of Social Science
and International Studies, University of Exeter, Exeter, UK
e-mail: g.russell@exeter.ac.uk
© The Author(s) 2020 287
S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_21
288 G. Russell

focusing on reforms. In a version of “divide and rule” argument he sug-

gests that fragmented and isolated identity movements have allowed for a
far-right resurgence [2]. There is also friction within identity politics over
definitions of who is included as “in” a particular group. The main cri-
tiques of the neurodiversity movement are then listed as follows: first, the
movement has been accused of being unrepresentative of all people who are
“neurodivergent,” and specifically unrepresentative of more impaired peo-
ple on the autism spectrum (a criticism made by some clinicians, autistic
people, and parents). Second, it is said arguments made by the move-
ment are reductionist, promoting a genetic/brain-based understanding of
autism (a critique made by academics in social sciences, history, and phi-
losophy of biology). This may deflect attribution of personal responsibility
for behavior to the brain. Third, there is a criticism along the lines of the
well-known declaration that “the master’s tools will never dismantle the
master’s house” [3].

How Identity Politics Dichotomizes

Would-Be Allies
Throughout this collection, contributors use the terms “neurotypical” and
“neurodivergent” to denote two distinct groups. Accounts in this collection
by Garcia, Neumeier and Brown, and Arnold, amongst others, utilize both
terms. Disability scholar Runswick-Cole [4] has pointed out these terms
can be divisive, fostering an “us” and “them” mentality. She denounces a
dichotomized view of the world where you are either “in” or you are “out”.
As we know from many studies of autism and other neurodevelopmental
conditions, autism and other diagnostic classes are psychiatric constructs
that denote a spectrum: a series of interrelated multidimensional traits.
These extend into the subclinical population, therefore many people who
do not have an autism diagnosis have autistic traits. This is known by
researchers as the “broad autism phenotype” [5–7]. It means there is no
clear bimodal distribution separating people with and without autism, so
in reality there are not two distinct populations, one “neurotypical” and
one “neurodivergent.” Instead autistic traits are distributed normally in
the whole human population [8], as are ADHD traits [9].
 21 Critiques of the Neurodiversity Movement 289

In addition, the tendency to dichotomize runs contradictory to the

inclusive definitions of neurodiversity given in the book. DaVanport
(Chapter 11) talks about neurodiversity thus: “Neurodiversity soon
became something that I intimately understood as the all-inclusive accep-
tance of every neurological difference without exception. I further came
to appreciate that neurodiversity didn’t leave anyone out.” Greenburg
(Chapter 12) defines neurodiversity: “Neurodiversity in my world, is the
unquestioned right for all, whatever their neurological makeup, to express
what they need or want.” She writes: “While I can’t define the totality of
Neurodiversity even for myself, much less anyone else, I know spaces where
I can see it.” At another point in her text, Greenburg puts the emphasis on
difference, describing “non-autistics whose brains and experiences differ
from ours so much” (Chapter 12).
“Neurotypical” (NT) is never used pejoratively in this collection. But in
autism online commentaries and debates it has been suggested such crit-
ical language is justified by the poor treatment meted out to the autistic
community (as well documented here). Tisoncik discusses “autistic supe-
riority” (Chapter 5) which is the tendency to claim autistic people are
in some way superior to NT people. She writes, “I am not upset about
claims of autistic superiority,” explaining that although this is not her
position, “we don’t need to worry about oppressed groups with little to no
power singing their own exclusive praises.” An example of such a claim
comes from description of NTs from the forum Quora: “I’m being cruel
I know. It’s okay though they have all the power and they have discrim-
inated against me all my life. I’m allowed to make fun of their innate
stupidity…they expect everyone to know it because they are the center of
the universe. Their hypocrisy on this is near universal” [10].
The issue with this is common to all identity politics and best explained
by alluding to another movement—the feminist movement. The argu-
ment made is that it is fine to be pejorative about, or insulting to, people
that profit from the status quo. But this is the same as a feminist saying
pejorative things about men e.g. “all men are <insert pejorative/offensive
word here>”: a blanket dismissal of all men. Clearly, there are some men
who are feminists and sympathetic to the aims of the feminist movement.
Plus, many men have characteristics that mean they too are discriminated
against: gay men, disabled men, migrants, and so on. To dismiss them all
290 G. Russell

in a blanket way will have the effect of alienating them from the cause. To
effect societal change, solidarity between such groups is vital, and those
on the left seeking to rebalance the status quo need to support each other’s
struggles. In addition, “all men are <insert pejorative term here>” is itself
a sexist statement. It is discriminatory to make offensive statements about
the “out” group, where the struggle should be against discrimination and
prejudice.
The true target for righteous anger, Runswick-Cole [4] and others have
argued, should be discriminatory and disabling societal structures, norms,
and practices. It is an issue many activists writing here seem well aware
of. Seidel, for example, writes: “I felt that needless discord, demagoguery,
and polarization could only exacerbate tensions and undermine advocacy
efforts” (Chapter 7).
Standpoint theorists support the idea that people with lived experience
have expertise in their own area [11]. This is the theoretical epistemic
stance that underpins this volume. It assumes standpoints are relative and
cannot be evaluated by any absolute criteria, but makes the assumption
that the oppressed (autistic people) are less biased (or more impartial) than
the privileged (NT people). This idea that people with lived experience
should be given more authority to speak, and make decisions about their
own futures, i.e. their voices should be given more weight than others, has
been criticized. To illustrate, take the example of female genital mutilation
(FMG), a practice widely abhorred. The main promoters of such practices
are often the grandmothers of the girls involved who themselves have
been subject to FGM. According to standpoint epistemology, such voices
(calling for FGM) should trump those of Western medical experts.
Another critique of the NT/ND divide is that “Neurotypical” is a very
dubious construct, and by default then so is “Neurodivergent.” Is there
anyone who is really, truly neurotypical? As Armstrong writes:

There is no such standard for the human brain. Search as you might, there
is no brain that has been pickled in a jar in the basement of the Smithsonian
Museum or the National Institute of Health or elsewhere in the world that
represents the standard to which all other human brains must be compared.
Given that this is the case, how do we decide whether any individual human
brain or mind is abnormal or normal? [12]
 21 Critiques of the Neurodiversity Movement 291

Of course, you do have to draw a line in the sand when you are demark-
ing yourself into a politically mobilized group. That is, for the neurodiver-
sity movement to exist there has to be a banner “Neurodivergent” under
which people can rally. That is required by any group—that you can argue
for rights for some people and not others, make the case for services for
some people and not others. I will drop the quote marks around “Neu-
rodivergent” for the remainder of this piece, as it is impossible to define
an identity-based movement without having a group identity. In order to
promote a positive self-identity too, you first need a group-based identity.
I understand that. But it is helpful to be aware, in tandem with this, that
dichotomizing can also cause difficulties.

Defining Who Is “In”: Who Is

Neurodivergent?
Another issue that applies to the whole of identity politics is the problem of
definition of people in the category. It is not always clear from accounts in
the book who is neurodivergent, and who is not. However, this is a crucial
issue. If you are advocating for legal protection against discrimination, or
arguing for support and accommodations, it is really important to be able
to define who that group actually are. If you are not clear who exactly you
are fighting for, those rights cannot be operationalized in law.
The nature of brain differences between autistic and non-autistic people
is not well-established or well-replicated [13], and many neuroscientific
studies of ADHD, Tourette, autism, and other neurodevelopmental con-
ditions have mixed results that are not well-replicated. The reality is that
most of these conditions are diagnosed via observation, cognitive testing,
or self-report, and not via neurological anatomy or physiology. Not many
diagnoses involve brain scans, so the neurological differences of neurodi-
vergent people are not seen but inferred.
Perhaps who is “in” as neurodivergent (ND) could be decided by a
medical diagnosis of a neurodevelopmental disorder, or a mental health
condition that is thought to be underpinned by neurophysiology, like
autism or depression? Neumeier and Brown seem to suggest this when
292 G. Russell

they write that “neurodivergence [includes] psychiatric disability or men-

tal illness” (Chapter 14). But the neurodiversity movement rallies against
the “medical model” as Arnold describes it, explaining his journal’s aim
to “embody a questioning and examining of the prevailing paradigms of
autism research” (Chapter 15). Then it is perhaps inappropriate to have
group inclusion criteria defined by medical diagnosis. Such a definition
would return the epistemic authority to define the group to medics, thus
rescinding the notion of “Nothing About Us Without Us” quoted exten-
sively by many contributors. Moreover, some people considered ND may
not yet have been diagnosed.
Perhaps, then, self-identification as ND is less problematic? Giwa
Onaiwu opted for this approach, “to accept the validity of people’s self-
identification as stated,” when compiling her intersectional anthology (see
Chapter 18). Self-definition certainly avoids the problems listed above, but
has caused huge divisions in other areas of identity politics. Arguments
between radicals in the feminist movement and the transgender activists
again provide an example. Some radical feminists have argued that being
a woman should be defined by biological sex and being bought up female
from birth, whereas the transgender activists have argued that anyone who
self-identifies as female is female. The trans-excluding radical feminists
assert that decades of rights they have fought for to have women-only
safe spaces are now being undermined, if (wo)men who self-identify as
women are now allowed into them. This issue was satirized in the UK by
a Labour party member who previously made it onto the list of candidates
for women’s officer because he “identifies as a woman on Wednesdays,”
under Labour’s “self-id” rules [14]. The man has now been suspended
from the party.
Self-definition may also exclude some people, who may be part of the
“in” group, but may not be aware of being in the group at all. For example,
ND people with late-stage dementia, or profound intellectual disability.
Others who may be ND don’t want to be labeled as such. Activists writ-
ing in the collection seem aware of the potential complications arising
from dividing people into well-defined groups, and several try to address
the problem. For example, Buckle explains the decision for no inclusion
criteria whatsoever at Autscape thus:
 21 Critiques of the Neurodiversity Movement 293

Having inclusion criteria, e.g. “autistics only” creates suspicion about

whether those in the group are really “us” or may be “them,” whether delib-
erately (infiltrators) or by mistake (falsely identifying as autistic). Exclusivity
also lends itself to the spread of prejudice and misinformation about the
excluded group. (Chapter 8)

Even having read this collection and others, I still am unclear about who
exactly is “in,” how widely the neurodiversity movement casts its net in
defining ND. Does it include just people with autism and other neurode-
velopmental conditions like “people with autism, dyspraxia, ADHD,” as
Garcia states (Chapter 17), or does it further include people with depres-
sion, schizophrenia, Tourette’s, psychopathology, as Neumeier and Brown
suggest in Chapter 14? In this case neurodiversity should be inclusive
of neurodegenerative conditions like dementia, and Parkinson’s too. The
problem is the boundary around who is “in” the ND class and who is
“out” is currently not transparent or well-defined.

Representativeness
Several vocal autistic people and parents have complained that the move-
ment is made up mostly of less impaired individuals who do not represent
people with more severe problems [15]. I have also heard people comment
at autism conferences that persons in the movement are not representa-
tive of most ND adults or children, and are not well-appointed to speak
for them. My understanding is that the argument is, broadly, parents of
more severely disabled children are keen for treatments to ease their chil-
dren’s condition, whereas the neurodiversity movement is seen as anti-cure
[13]. Activists counter that the movement does advocate for supports that
mitigate weaknesses associated with autism, arguably focusing more on
improving access to reliable communication and certainly more on essen-
tial services (which mostly go to those with the highest needs) than most
organizations and individuals interested in curing autism.
Those parents supporting more medically-oriented models identify the
distress and difficulties associated with neurodevelopmental conditions
as impairments [16]. Such difficulties lead to problems in functioning
294 G. Russell

and lower quality of life. From this point of view, the conditions that
are encompassed by neurodiversity are medical conditions that can and
should be cured if possible. Autistic people have also spoken in favor of
this more pathologized view: “Many of us aren’t high-functioning enough
to benefit from depathologizing autism…I still feel autism keeping me
from achieving my potential” [17].
It is important to note, however, that many parents are in the move-
ment, including some writing here. The movement allows space for parents
and other allies. Sometimes their children, as in the case of Des Roches
Rosa, don’t have the language skills to engage in conventional activism. So
parents are another way in the movement that those who cannot directly
represent themselves in formal activism are represented.
Academics have made similar critiques. Ortega [18] argues that so far
the movement has been dominated by people diagnosed with Asperger
Syndrome and other forms of “high-functioning autism.” I have heard
a pediatrician-academic dismiss the movement using the same criticism.
Casanova, a prominent neurologist writes: “the records that we have at
present on neurodiversity are the records of an elite, those that stand at
the top…misrepresentation of opinions of the pro-neurodiversity elite as
being representative of those at the bottom” [19]. This forms part of a
vitriolic attack that claims, “the only thing they have accomplished is the
creation of a split in the autism community that allows for themselves
and nobody else…Neurodiversity is a social club where many of its par-
ticipants are non-autistic individuals claiming to be autistics.” In another
article (also condemned by members of the movement) Jaarsma and Welin
make the case that that the neurodiversity doctrine is sensible if it is only
applicable to this narrow group “only a narrow conception of neurodiver-
sity, referring exclusively to high-functioning autists, is reasonable” [20].
Activist blogger Hiari, who herself has been given a diagnosis of autism,
writes for the critical psychiatry site Mad in America. She issues another
stinging critique of the neurodiversity movement [21], writing that the
movement amounts to no more than:

A public relations campaign that emphasizes the many positive qualities

associated with some presentations of autism—creativity, increased toler-
ance for repetition, enhanced empathy, superior ability to master content
 21 Critiques of the Neurodiversity Movement 295

in specific subject areas, and exceptional memory—while erasing or mini-

mizing the experiences of autistics who are severely disabled.

People at the vanguard of the neurodiversity movement have often

been autistic, as this volume testifies, and they have mobilized through
making contact online or on email lists, InLv, and autistics.org being prime
examples.The main method of mobilization of the autistic/neurodivergent
community therefore inadvertently excludes people who are unable to
make contact with each other on computers: “Many on the spectrum can’t
speak or use a computer” Mitchell asserts [15]. In the current volume,
Buckle discusses the efforts that have been made to be as inclusive as
possible at Autscape: “we have tried to include some activities that are
more accessible to people who don’t handle words as well as most of us,
with mixed success.” She also touches on the practical barriers to achieving
full inclusivity and provides a fantastically practical guide to designing
autistic-friendly events.
Parents point out that as young children and those with profound intel-
lectual disability cannot advocate for themselves, they as parents must.
Activists in the movement counter that parents may have a different agenda
to those with lived experience. Activists have stated the case for first-person
representation: that elsewhere in society we accept the idea that anyone
who speaks for a group should be a member of the group, and by that rea-
soning any spokesperson for autistic people should be autistic. There are
some prominent advocates who themselves or whose child have been diag-
nosed with intellectual disability or who are non-speaking, some of whom
have contributed to this collection. Baggs, who is non-speaking, writes
“I’d far rather have Michelle Dawson, Cal Montgomery, Laura Tisoncik,
Joelle Smith, or Larry Arnold, speaking on my behalf than these parents”
(Chapter 6).
The implication of several writers in the collection is that they are
related to other autistic people. Garcia writes of “my autistic brethren”
(Chapter 17), and daVanport, “we are linked by a familiar neurology”
(Chapter 11). Such statements create a kinship argument: that all autistic
people are somehow of one tribe and genetically related, or neurologically
similar, so are best qualified to talk about issues that affect the autism
community.
296 G. Russell

The Science and Technologies scholar Silverman critiques the kinship

argument in her book Understanding Autism [13], explaining that autis-
tic advocates’ predicate their claim to represent the autism community
in “presumed neurological and genetic likeness to other autistic people”
(p. 142). Silverman argues such presumed relatedness lends ethical legiti-
macy and entitlement to be representatives of the whole group, but points
out a contradiction if the group embrace genetic and neuro-explanations,
but reject genetic research.

Reductionism
Ortega [18] assesses many of the critiques raised here, and points to the
rise of neurological and biologically based explanations for behavior, which
replaced the dominant psychoanalytic models of the 1970s. For autism,
the “refrigerator mother” theory was interpreted to mean that autism was
a reaction to an emotionally deprived upbringing. The shift to a primar-
ily genetic and neurological understandings of autism in the 1980s was
ushered in by the pioneering twin studies that provided conclusive evi-
dence of the heritability of autistic traits [22]. The history of autism and
how children’s mental health and deviance has been variously conceived
is covered in many excellent texts, all worth reading [13, 23–25].
There is also bio-medicalization [26]. This process is defined by Con-
rad as virtually the reverse of neurodiversity: the transformation of every-
day human conditions and behaviors into diagnosable, treatable disorders
that come to fall under medical jurisdiction [27]. Silverman has cited
the increasing diagnosis of autism as an instance of medicalization [13].
Hedgecoe [28] has written about the process of geneticization, through
which a condition comes to be understood primarily as genetic. Bumiller
has written about this with reference to autism [29].
The rise of neuro-understandings is another example of the way behav-
iors are now framed as having biological underpinnings. Satel and Lilien-
field [30] call this process “Neurocentrism”: that is, the tendency to use
neurological explanations to explain aspects of a person’s behavior, e.g.
Shannon Rosa’s account of her son: “he was born with his autistic brain”
(Chapter 12).
 21 Critiques of the Neurodiversity Movement 297

Both neurocentrism and geneticization have been critiqued as forms of

biological reductionism, partly because they de-emphasize the complexity
through which behaviors are shaped. A reductionist account would see
psychological facts as reducible to neurological facts, which is in turn are
reducible to biological facts. One consequence of labeling with a diagnostic
category like autism is that autistic people’s behavior is attributed to brain
difference, rather than being under their control [31, 32]. The philosopher
of biology Dupré argues against such reductionist accounts of human
behavior [33], and opposes the use of causal language.
That genes “cause” autism can be critiqued on many levels. First, behav-
ioral traits which identify autism are exacerbated by the social context and
they change over a child’s development, so do not imply a fixed state. Some
children classified as having autism outgrow their diagnosis, so autism is
not necessarily a stable neurological difference throughout the lifecourse
[34]. Second, genetic association studies show there is a multi-factorial,
complex, genetic predisposition to autism which interacts with epigenetic
factors. Third, the environment may alter the development of a person’s
neurology throughout the lifecourse, whatever their genetics. Fourth, neu-
rology is not fixed but constantly adapted through learning. Dupré argues
a better model would be probabilistic causality, where nothing “causes”
something else but instead increases the chances of it happening.
Although some activists writing in this collection adopted sim-
pler reductionist models, others show their knowledge of complexity:
“Genetic research indicates that at least twenty different genes can sig-
nal a predisposition to autistic development” (Seidel, Chapter 7); “the
genetic factors involved in autism [are] very complex” (Evans, Chapter 9).
Embracing a more nuanced understanding may be a better reflection
of reality, but perhaps neglects the impact causal models can have on the
real world. For parents of autistic children, for example, the geneticization
of autism has meant thousands of mothers escape the guilt and blame
that “refrigerator mother” theory engendered. For neurodiversity activists,
neuro-models can be a potent instrument to securing accommodations,
services, and rights, and gaining political recognition [18].
298 G. Russell

Medicalization and the Master’s House

More widely, medicalization has been defined as the process through
which normal behaviors come to fall under medical jurisdiction [27].
In this sense, the neurodiversity movement seeks to de-medicalize autism,
because members have argued that autism is a part of normal human
variation and should not be considered as a disorder or in medicalized
terms. But at the same time, underpinning these arguments are very
biologically/neurologically-grounded models of understanding of differ-
ence (e.g. “neuro”-differences, “neuro”-diversity). Arguably, these are part
of the medicalized framework. The neurodiversity activists therefore co-
opt parts of the medical model, whilst espousing broad opposition to the
medical model of autism. The whole volume illustrates how a medical-
ized understanding of autism as a diagnosis of autism spectrum disorder
differs from the understanding of autism in the accounts of neurodiver-
sity activists. Contributors describe the medical framework as tending to
pathologize people:

We were so used to being misunderstood, patronized and pathologized

(Dekker)
The dangers of using a selective pathological description (Baggs)
Undue pathologization of their traits (Seidel)

More general resistance is expressed, e.g. “our community had been

segregated by a medical model which insisted on separating us from our
natural peers” (Craine, Chapter 19). Such accounts show opposition to
medicalization, yet sometimes deploy medicalized rhetoric. In this sense
the NDM can be interpreted as using the Master’s tools medical narratives]
to tear down the Master’s house [the medical taxonomic framework], a
euphemism used by Lorde [3], a black lesbian feminist.
Lorde’s reference to the inability of “the Master’s tools to dismantle the
Master’s house” [3] is a critique of utilizing the rules of those in power.
Lorde is arguing that playing their (the Master’s) game cannot bring about
genuine revolutionary change. ASAN’s input into DSM-5, which defines
how autism is understood and identified (Chapter 13), was to gain reform
not revolution. ASAN chose to engage with the psychiatric system and play
 21 Critiques of the Neurodiversity Movement 299

the rules—adopting the language of science and using scientific citations

to communicate their political points to represent the best interests of
the autistic community. Kapp and Ne’eman thus provides an excellent
counter to the “Master’s tools” argument in Chapter 13, showing how
ASAN brought about meaningful change. Their tactic of engagement
with the establishment is reminiscent of the AIDS activists’ strategy of
becoming proficient with and co-opting scientific empiricism to become
scientific experts and communicate with the scientific establishment [35].
At the same time, they argue that the DSM should openly acknowledge
that diagnosis is partly shaped as a political, as well as a scientific process, a
point made by others in the academic literature. Aronowitz, for example,
argues that symptoms become “a disease” through social and political
processes [36]. Acknowledging and encouraging the socio-political nature
of psychiatric taxonomy of DSM underlines that autism is an entity that
is both constructed and is a neurodevelopmental difference.
It can be pathologizing to be given a diagnosis of disorder. At the same
time, the medical diagnosis can act as an explanation of the experience of
difference, a rallying point for political action, a tool to unlock resources
and services, and a first step in moving toward entering a community. Kapp
and Ne’eman acknowledge there is a need for a diagnosis but suggest a
middle way might be possible: “We believe that identification of autism
should transition to a non-pathological system.”
I have questions about one’s responsibility for behavior and the way
diagnosis (or a diagnostic category) excuses deviant (or poor) behavior as
a form of sickness [37]. The problem is a “born this way” narrative de-
emphasizes personal responsibility, which can be tremendously helpful,
but can sometimes be used as an excuse to avoid culpability. If a person
was diagnosed with Tourette’s, their swearing would be seen as an invol-
untary aspect of their condition, promoting tolerance and acceptance. On
the other hand, what about a psychopathic person who manipulates and
exploits others? This behavior also seems to fall under the wider neurodi-
versity banner, so does the neurodiversity movement require acceptance
that the person can’t control their behavior, and therefore not culpable
or responsible for their behavior? Should neurodivergence be more often
considered as a legal mitigating factor? ADHD is strongly associated with
300 G. Russell

criminal behavior, for example [38]. Again, perhaps a more nuanced ques-
tioning of repercussions of these concepts may be necessary.

Group Think
A final critique is the accusation that the movement requires conformity.
Some complain the movement may engender social conformism through
doctrinal thinking that excludes autistic people with diverse viewpoints.
Hiari asserts that “The neurodiversity movement epitomizes groupthink”
[21], and cites the expulsion of autistics like pro-cure Mitchell and Google
engineer Damore (who wrote that male/female disparities can be partly
explained by biological difference). I am not sure of the legitimacy of these
arguments if Neurodiversity is considered as a political ideology. If it is
thought of this way, the neurodiversity movement operates more like a
political group, and is entitled to throw out members who express views
contrary to the party line. Just because you are female does not make you
a feminist.

Conclusion
These are some of the critiques faced by the neurodiversity movement.
Whilst the movement seeks a non-pathologizing form of identity and the
autistic activist community and allies have made a unique contribution
toward this, this aim may sometimes sit uncomfortably with pragmatic
forms that their activism takes.

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 22
Conclusion
Steven K. Kapp

In less than 30 years of organized activity, the autism rights branch of the
neurodiversity movement has progressed from the fringe to the edge of
the establishment. As it has matured from a mainly socio-cultural scope
to an active part of a cross-disability rights coalition, the neurodiversity
movement has shifted increasing focus toward not only what it opposes,
but also what it supports. Increasing engagement on practical issues from
the balance between safety and autonomy to reproductive and parenting
rights have made the boundaries of activists’ positions clearer and offered
practical support in areas, such as through toolkits and multiple book
presses owned by autistic and other neurodivergent people. Autistic people
(and our organizations) have become increasingly included and recognized

S. K. Kapp (B)
College of Social Sciences and International Studies, University of Exeter,
Exeter, UK
e-mail: steven.kapp@port.ac.uk
Department of Psychology, University of Portsmouth, Portsmouth, UK

© The Author(s) 2020 305

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0_22
306 S. K. Kapp

in autism advocacy, for example we have been consulted (alongside parent-

led organizations) on matters from Hillary Clinton’s 2016 presidential
campaign [1] to an autistic Sesame Street character [2], producing results
that pleased the autism community generally.
This concluding chapter will summarize the stories of events told by
leaders of the autistic community and neurodiversity movement in this
book and provide context to their significance in the broader political and
social world. It will also address some of the critiques of the movement
and suggest avenues where activists can make further progress.

The Story so Far

The neurodiversity movement has had overwhelmingly positive influence
on clinical and scientific directions in the autism field. Interventions and
supports have increasingly adopted approaches and goals more aligned
with the neurodiversity framework (e.g. building from strengths and inter-
ests to develop useful skills rather than normalization; den Houting [3]). A
growing number of leading scientists, beginning mainly in the U.K., have
become openly interested in the movement and do work with relatively
high compatibility with the neurodiversity perspective [4]. Research (e.g.
in the U.S.) has moved toward the neurodiversity movement’s research pri-
orities, with a much higher proportion of funding awarded for studies on
services, adults, and underserved populations [5]. Similarly, studies have
increasingly recognized autism’s complexity to the point that recognition
that traits which may be advantageous have become part of the state of
the science, and autistic adults have demonstrated the most expertise in
autism according to the latest scientific understanding [6]. Many years
after autistic individuals like Temple Grandin (followed by the organized
autistic community) influenced the autism field to incorporate atypical
reactions to sensory input in the diagnostic criteria, participatory research
partnerships with autistic people have finally become a popular trend
(especially in the anglophone world; Nicolaidis et al. [7]; Silberman [8]).
Autistic community and neurodiversity movement leaders, especially
the contributors to this book, have driven this shift toward inclusion
 22 Conclusion 307

of autistic people and their goals. Autistic voices have raised the pro-
file of harms against autistic and neurodivergent people and a sense
of autistic identity, such as Sinclair’s essay “Don’t Mourn for Us” (see
Pripas-Kapit, Chapter 2) and websites or webpages autistics.org (Tison-
cik, Chapter 5), Getting the Truth Out (Baggs, Chapter 6), and “The
Autistic Genocide Clock” (Evans, Chapter 9). As an autistic-led scholarly
journal within critical autism studies, Autonomy has helped to preserve key
autistic writings like “Don’t Mourn for Us” and demonstrate the exper-
tise of autistic people in shaping academic and lay ideas about autism
(Arnold, Chapter 15). Autistic-led organizations that meet in cyberspace
such as InLv (Dekker, Chapter 3) and physical space such as Autscape
(Bucker, Chapter 8) have provided acceptance for fellow autistic people,
further building autistic community. Active efforts to include autistic peo-
ple who share other marginalized identities, such as who have an oppressed
gender (daVanport, Chapter 11) or race (Giwa Onaiwu, Chapter 18),
have helped advocates represent and strengthen autistic community and
activism. Allies such as Seidel of neurodiversity.com (Chapter 7) and the
non-autistic editors working alongside autistic editors of The Thinking
Person’s Guide to Autism (Greenburg and Des Roches Rosa, Chapter 12)
have helped the neurodiversity movement gain the credibility, channels,
and power to spread the pro-science, pro-autism acceptance agenda to
non-autistic relatives, professionals, and researchers. Campaigns led by
autistic and other disabled people against medically and legally sanc-
tioned abuses such as chemical restraint through overmedication (Murray,
Chapter 4) and institutionalized electric shock therapy (Neumeier and
Brown, Chapter 14) have raised awareness of these practices and gathered
momentum against them. Meanwhile, organizations and individuals have
incorporated the neurodiversity framework into their everyday work out-
side of formal activism. These include the AASPIRE community-based
participatory research project that has attracted federal funding and inter-
national acclaim as a model for including lay and scientific autistic people
alike in every phase of academic studies (Raymaker, Chapter 10), and Eric
Garcia’s journalism that positively and accurately publicizes autism and
disability in news and analysis (Chapter 17).
Now the neurodiversity movement has arguably arrived at the threshold
of the autism establishment. Autistic activists advised the revision of their
308 S. K. Kapp

own diagnosis in the DSM-5, achieving significant success (although short

of our goals), but this happened on an ad hoc basis rather than as part
of full and systemic inclusion (Kapp and Ne’eman, Chapter 13). The
creation of Neurodivergent Labour in connection with the U.K.’s Labour
Party (Craine, Chapter 19) and the National Autistic Taskforce as an
outgrowth of the National Autism Project (Murray, Chapter 20) have
shown an investment in the neurodiversity movement for research, public
policy, and practice in the U.K. for autistic people and beyond, although
due to their recentness a fuller assessment of their impact awaits. As the
movement has become more mainstream activists have tended to maintain
their principles, and abandon counterproductive attempts to moderate
activists who antagonize autistic people, as Robison did when he resigned
from advising Autism Speaks (Robison, Chapter 16). This action propelled
that exceptionally powerful organization to begin to make reforms [9],
which suggests the movement may become a more dominant force in
autism advocacy while staying true to itself.

Inclusion of Autistic People with Higher

Support Needs
While the neurodiversity movement has become more representative
of autistic people’s developmental and cultural diversity through autis-
tic members and both autistic and non-autistic parents or relatives, the
most persistent critiques about it tend to claim that it only serves the
needs of autistic people with low support needs—sometimes inaccurately
and offensively called “high-functioning”. As unfortunately this book’s
design did not enable autistic people lacking verbal fluency to contribute
(although it does have a non-speaking contributor, Baggs), I will attempt
to address these concerns in this section.
While the autism rights movement has welcomed autistic people regard-
less of support needs—as well as non-autistic relatives, support people,
or friends as allies—from the beginning (Pripas-Kapit, Chapter 2), the
fluidity and complexity of autistic people’s support needs make classify-
ing them by functioning levels or labels inaccurate. Speech, language, and
 22 Conclusion 309

communication all differ from one another, and verbal tests tend to under-
estimate the cognitive abilities of autistic people with little expressive lan-
guage [10–14]. Reasonable accommodations such as allowing extra time
[15] and visual supports [16, 17] support many such autistics to reveal
their verbal comprehension and cognitive capabilities. Not only do many
such individuals perform as “untestable” on standard IQ tests, but they
tend to poorly relate to functioning in autistic people generally [18]. Fur-
thermore, the autism field has failed to identify valid subtypes within the
autism spectrum, or any consensus on how to measure autism severity
or support needs. This contributed to the decision of the DSM-5 work-
group—influenced by the Autistic Self Advocacy Network to oppose the
imposition of a severity scale and frame it as about “support needs” to
protect access to services (Kapp and Ne’eman, Chapter 13). Many autis-
tics perform well because of the social contexts and supports, and struggle
when their enabling environments and services disappear (e.g. after leaving
high school; Kapp [19]).
These difficulties with conceptualizing and measuring autistic peo-
ple’s developmental diversity include that autistic people typically have
uneven skills (American Psychiatric Association [20]; Kapp and Ne’eman,
Chapter 13), and large disparities in our cognitive profiles [21]. The
same autistic individuals’ behavior [22] and perception [23] has demon-
strated exceptional variability to the same task or stimuli over time. Even
so-called talents or gifts (where present) vary in their presentation as
strengths or weaknesses [24], depending on factors such as the social con-
text [25]. Autistic-typical strengths such as pattern recognition tend to
exist across the spectrum, including in minimally verbal children classi-
fied as “untestable” [10].
Autistic people also tend to gain skills across our lifespans (APA 2013),
and the same activists parents might claim as unlike their child may have
presented more severely as children. For example, Sinclair, the main “fa-
ther” of the neurodiversity movement through their work with Autism
Network International (see Chapter 2), noted of ANI co-founders “we
had all fit descriptions of ‘low functioning’ autistic people when we were
younger” [26]. All had speech delays as children, such as the onset of
semi-reliable independent speech at age 12 for Sinclair, yet their access to
speech and functioning continued to vary in daily life as adults [27]. Many
310 S. K. Kapp

non-speaking autistic people participate in the neurodiversity movement

today, including serving on the board of organizations like the Autistic Self
Advocacy Network and Autism National Committee, authoring papers
in a special issue on the movement in a major disability studies journal,
writing blogs, co-editing or contributing to books, and (co-)directing or
participating in documentaries. Many members have significant impair-
ments and support needs, such as long-time activist Cal Montgomery, one
of the most widely cited autistic leaders in this book (by Laura Tisoncik
[Chapter 5], Mel Baggs [Chapter 6], and Shain Neumeier and Lydia X. Z.
Brown [Chapter 14]), who said, “I am incontinent and cannot live alone,
cannot bathe myself, etc.” (personal communication, February 22, 2019).
From the movement’s beginnings, non-autistic family members have
advocated alongside autistic activists to fight for the rights of their rel-
atives, many of whom would struggle to engage as social activists even
as everyone self-advocates and communicates through behaviour or other
forms of communication [28]. For example, disability rights activist Diana
Pastora Carson does not identify as neurodivergent but managed her fam-
ily’s successful fight to remove her significantly impaired autistic brother
Joaquin (Carson) from an institution, led by Joaquin’s expressed desire to
leave that she explained. After a life of enforced behavioral compliance
training, chemical and physical restraints, and banishment to an institu-
tion, Joaquin settled in his own house of his choosing in the community
with the full-time support of publicly funded alternating staff, where he
has the support of and friendships with neighbors; contributes to events;
and walks, runs, and bikes in the peaceful surrounding countryside. He
enjoys work, frequent visits from his close relatives, expanded access to
communication (through words, typing, and a board), and attending uni-
versity courses [29].
Nevertheless, movement activists arguably do often have skills more
developed in key areas than most people in a population, including in
communication. The neurodiversity movement is no different in that
regard, and all parts of the autism community leave room for improve-
ment in making their organizations, work, and activities more accessi-
ble and inclusive. While autistic-led events such as Autreat in the US
(Pripas-Kapit, Chapter 2) and Autscape in the UK (Buckle, Chapter 8)
have developed tools, activities, and schedules in chosen venues to try to
 22 Conclusion 311

reconcile competing access needs, they have encountered limits to accom-

modating everyone. While the movement may underrepresent the most
profoundly impaired autistic people with the highest support needs, the
broader autism community and autism field share that challenge. Autistic
people with ID and high “severity” have become increasingly excluded
from autism research [30, 31] .

Serving the Interests of Autistic People

with Higher Support Needs
The neurodiversity movement seeks to safeguard and fight for the provi-
sion of “the full set of human rights” to all neurodivergent people [32],
in all major life domains such as “accessing communication, education,
employment, competent medical care, the right to make our own decisions
and live on our own terms, friendship, romantic relationships and sexual-
ity, freedom from abuse, or the basic premise of our lives being acceptable”
[33]. These rights apply equally to people with higher support needs, and
those less empowered suffer the most vulnerability to violation of their
rights. For example, autistic people with less recognized or reliable com-
munication may risk greater abuse and neglect from so-called caregivers,
with less access to legal recourses. While the right of people with disabil-
ities to exist may strike some as uncontroversial, I have observed even
disabled activists express understanding of and advocacy for parents who
murder their disabled child, with no one but me speaking to the plight
of the child, while serving in the capacity of a public U.S.-based body
intended to protect the human rights of people with disabilities. Disabled
people would not be tortured with electric shock “treatment” in the Judge
Rotenberg Center (Neumeier and Brown, Chapter 14) were it not for pro-
tection from parents who influence politicians. These sorts of actions have
generally not received the same level of priority from parent-led advocacy
organizations, if not condoned by them. When people working for those
organizations commit abuse, the workers often experience a metaphori-
cal slap on the wrist rather than prosecution, such as recently a relatively
modest fine against a “care” home run by the UK’s largest autism orga-
nization [34]. As autistic activist Crow [35] argued, “we should not have
312 S. K. Kapp

our humanity be devalued on whether or not we are nonverbal or need

24/7 care for rest [sic] of our lives” (pp. 5–6).
Within the autism community autistic adults and the neurodiversity
movement place the highest priority on systemic, practical needs such as
services, a more immediate and arguably effective focus than the biological
and causation studies that consumes most autism research funding [36].
The neurodiversity movement emphasizes increasing literacy and access
to reliable communication, as declared by Ne’eman [37], who imple-
mented this priority while serving on the U.S.’s steering body for funding
autism research through successfully pushing for research on augmenta-
tive and alternative communication. This is echoed in the U.K. where
the members of the National Autistic Taskforce exercise their verbal and
other privileges to prioritize the needs of more disabled autistic people.
A foundational focus on policy for the most politically mobilized autistic
people, like the broader disability rights movement, has helped preserve
access to hard-won rights and services while extending others. In the U.S.,
examples include protecting healthcare and community living through
developmental disability services, while raising the minimum wage for
workers with disabilities (previously paid as little as pennies on the hour)
to parity with the raise for other federally contracted employees [33]. A
stronger collaboration in the autism community on supporting the right
(and funding) for autistic people to live in their own place with the support
needed would enable families to not need to serve as primary caregivers
for autistic adults, or at least shifting greater priority to family services
could provide relief for familial caregivers.
Parental acceptance of their child’s autism helps the parents’ under-
standing of their child, well-being, and the parent–child relationship. This
parental acceptance of autism does not relate to the “severity” of the child’s
externally measured “symptoms” (e.g. by trained observers based on cod-
ing of elicited behaviors and semi-structured interactions), but only relates
to (fewer or less pronounced traits) according to parental self-report [19].
These findings suggest the attitudes against the neurodiversity movement
for autistic people with higher support needs only hold for subjective per-
ceptions of autistic people’s differences and impairments.
Similarly, external and self-acceptance of autism helps support autistic
adults’ well-being [38], as it likely does for younger autistic people. While
 22 Conclusion 313

the autism research field lacks analysis of autistic people’s views on the
core claims of the neurodiversity movement according to their supposed
level of support needs, autistic people’s functioning has a complex rela-
tionship with their core traits and abilities, and one should not make the
dangerous assumption that more impaired individuals would more likely
oppose the neurodiversity framework. While autistic people with higher
support needs undoubtedly face greater risks of denial of basic rights such
as autonomy and inclusion, research indicates that autistic people with
subtler manifestations of autism and higher cognitive abilities experience
more peer bullying, distress, internalized ableism, and exclusion from ser-
vices [19].
Furthermore, while a study reporting that the social factors related to
discrimination and stigma accounted for 72% of the distress experienced
by autistic adults had a highly verbal sample [39], this may apply across
the autism spectrum. For example, statistical studies have failed to explain
self-injury, with little to no relationship to IQ and even anxiety [40];
review and research by Dempsey et al. [41]. Yet this may result from the
studies’ reliance on parent report; only autistic people have direct access to
our emotions, and reporting on autistic children’s anxiety has fared better
by self-report than parent report [42]. Aggressive behaviors (including
against the self ) may stem largely from failure of the social environment
to meet autistic people’s needs, as autistic neurodiversity activist Ballou
[43] argues.

Final Thoughts
This book has attempted to document the actions of leading autistic
activists in the neurodiversity movement, covering the history at a time
when it has undergone different waves in its development, yet not too late
to attract most leaders from the countries where it has become most estab-
lished. It has also sought to explain the concepts of neurodiversity and the
beliefs and work of the neurodiversity movement, engaging with critiques
at a time when misunderstandings linger. “Neurodiversity-lite” has seeped
into autism culture (adopting some of the rhetoric of the movement but
not truly implementing the principles: Neumeier [44]), perhaps mainly
314 S. K. Kapp

due to ignorance but also co-option of the movement’s strengthening force

(e.g. changing an organization’s name but not its practices—“On Autism
Orgs” [45]).The movement has made great progress and has begun to enter
politics, yet unless the movement further coalesces in a broader coalition
in more regions of the globe, its impact on combating the growing aus-
terity in a global competitive economy may be limited. Future books and
works of scholarship and activism may further shed light on the current
status of the movement beyond its origins (beyond autism and well beyond
mainly anglophone countries), and deconstruct paths forward for helping
neurodivergent people receive the support and respect we need.

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 Index

A and Judge Rotenberg Center, 204

AAP (Autistic Advisory Panel), neurodiversity, 35, 134–141, 155,
National Autism Project 281, 294, 300, 305
282 political, 65, 72
AASPIRE (Academic Autism Spec- scientific, 138
trum Partnership in Research social justice, 150
and Education) 13, 133–142, adaptive functioning 7, 185, 187
307 ADAPT, National 199
ABA (applied behavioral analysis) ix, ADHD (Attention-Deficit Hyperac-
158, 273, 278 tivity Disorder) 259, 263, 272,
ableism 67, 152, 160, 197, 250, 313 288, 299
accessibility 114 ADH-L (Academic Dick Heads List)
activism 5, 10, 14, 148, 266, 314 78
autistic, 46, 75, 116, 131, 133, advocacy
134–141, 307 autism. See autism advocacy
and autistics.org, 65, 67, 68 neurodiversity 155–165
and disability rights, v AFF (Aspies for Freedom) 126–127,
and electric shock “treatment”, 128, 131, 201
201, 203
intersectional, 152

© The Editor(s) (if applicable) and The Author(s) 2020 319

S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,
https://doi.org/10.1007/978-981-13-8437-0
320 Index

All the Weight of Our Dreams: On Aspergia 125–126, 131

Living Racialized Autism 243, “Aspie Supremacism” 171
250 assault, medical treatment as 59. See
American Psychiatric Association 9. also electric shock “treatment”
See also diagnosis/Diagnostic AutAdvo 92, 93
and Statistical Manual (DSM) AutCom 97
Americans with Disabilities Acts #autfriends/#autism 70–73
(1990 & 2008) 151, 172–173, autism
198, 235 diagnostic criteria for 167–189,
Ammerdown Centre 110 306
Andrews, David 54, 215 politics of, 237
ANI (Autism Network International) as response to trauma, 188
2, 23, 42, 109, 136, 216, 309 severity scale for diagnosis of,
“An Anthropologist on Mars” 89 167, 175, 177, 179, 183–185,
“anti-cure” perspective on autism 293 183–184, 187, 309
anti-Judge Rotenberg Center activism single unified diagnosis of, 169,
204 171, 180
antisocial behavior 117 as social communication disability,
APANA (Autistic People Against 249
Neuroleptic Abuse) 12, 51–61, and vaccines. See vaccines, and
278 autism
APPGA (All-Party Parliamentary Autism Acceptance Day/Autism
Group on Autism) 57–58, 277 Acceptance Month 12
ARGH (Autism Rights Group Autism Act (2009) (UK) 15
Highlands) 284 autism advocacy 11, 14, 24, 98, 157,
ASAN (Autistic Self Advocacy 306, 308
Network). See Autistic Self and Autism Speaks, 221, 228, 230
Advocacy Network (ASAN) AutismAndRace.com 250
“ASD in DSM-5: What the Research autism-as-tragedy paradigm 26–27,
Shows and Recommendations 28, 30, 33, 34, 91, 229
for Change” 181 Autism Awareness Day 239
Ashkenazy, E. 243, 244 autism diagnosis 23, 90, 167–189,
Ashton, Karen 59 263, 296
“Ask a Neurotypical” panel, at Autreat Autism Dividend, The 282
35 “autism epidemic” 92, 94, 223, 238
#asperger Internet Relay Chat Autism Every Day 95, 130, 148
channel 47 Autism Hub 97, 126, 129–131
Asperger’s Syndrome 46, 124, 169, Autism in Adulthood 140
214, 216, 233, 294
 Index 321

Autism/Neurodiversity Manifesto 3, autistic spectrum (InLv), independent

15, 255–274 living on the 41–48, 109, 110
autism policy 221 Autistics Speaking Day 12
autism quackery 156 “autistic superiority” 73, 289
autism research 151, 224, 229, 311, autistics.org 12, 65–75, 134, 295,
312 307
and dehumanization, 73 autistic traits 26, 70, 91, 120, 126,
ethical concerns with, 7 288, 296
participatory, 13, 133, 139 and DSM-5, 172, 176, 185, 187,
problematic, 135 189
autism rights v, 1, 2, 8, 14, 305, 308 autoethnography 216
Autism Society of America 12, 83, autonomy 2, 8, 58, 198, 206, 246,
95, 180 277, 305, 313
Autism Speaks 130, 131, 221–231, Autonomy (journal) 14, 211–219,
278, 279 307
autism spectrum 9, 169, 170, 180, Autreat 12, 13, 24, 30, 35, 36, 48,
185, 248, 298 97, 216, 310
autism therapy ix, 6, 60 and Autscape, 109, 110, 112–114
autism-vaccine disinformation 158 Autscape 13, 48, 109–121, 282, 292,
autism-vaccine litigation 96 295, 307, 310
Autistica 277–281 aversives 200, 203, 205, 206
autistic activism 46, 75, 116, 131, “awareness” 83, 198, 238
134–141, 307 AWN (Autistic Women and Non-
autistic culture 1, 35–37 Binary Network) 13, 147–154,
“Autistic Distinction, The” 92–93 157
Autistic Genocide Clock v, 13,
123–131, 307
autistic identity 134, 158, 201, 306 B
Autistic Passing Project 174 Baggs, Mel 57, 98, 158, 198, 295,
Autistic Pride Day 12 298
Autistic Self Advocacy Network Bartak, Lawrence 27
(ASAN) 9, 130–131, 136, BBS (bulletin board systems) 41, 43,
148–150, 158, 231 44
DSM-5 lobby- behaviorism 58, 175, 195–196, 198,
ing/recommendations by, 279
167–189, 309 Berkowitz, Lori 151, 246
autistic space 4, 13, 35, 111–114, Bettelheim, Bruno 68, 68n2
117, 118, 120, 121 biology 3, 5, 46, 225, 228, 288, 297
bio-medicalization 296
322 Index

biomedical model, Western 8 environmental, 3, 6, 8, 96

Birmingham, University of 57, 60, CBPR (Community Based Partic-
215, 218, 280 ipatory Research) 134–137,
blogging 129, 134, 161, 201, 140
258–260 “challenging behaviors” 52
Blume, Harvey 45, 47, 90 chemical restraints 237, 307
Booth, Janine 268–270, 274 chronic illnesses 3
Bovell, Virginia 58, 277 civil rights 41, 126, 127, 129, 134,
Bowen, Paul 59, 60 136, 234
Breakstone, Savannah Logsdon 150, civil rights movements 10, 66, 72,
151 147, 152
Bridging the Gaps 31, 32 class 3, 5, 67, 167, 171, 187, 197
broad autism phenotype/broader clinical practice 183, 189
autistic phenotype 91, 288 Clinton, Hillary 237–239, 306
broader autism community vii, 15, cognitive abilities/cognitive capabili-
311 ties 185, 309, 313
Brook, Kabie 283, 284 cognitive demands 172, 178
Brown, Lydia X.Z. 243, 310 cognitive differences 29, 92, 93, 99,
bullying 67, 69, 70, 119, 313 309
Burns, Charles 110 cognitive impacts 172, 178
“butterfly effect” 268–269 cognitive profiles 309
cognitive variety 29, 92, 93, 99, 309
Colley, Mary 214
C communication 3, 11, 26, 61, 98.
CAFETY (Community Alliance for See also Social Communication
the Ethical Treatment of Youth) Disorder (SCD)
202 assistive, 97
Cal (Cal Montgomery) 65, 73, 78, nonverbal, 91
83, 198, 199, 295, 310 social, 183, 185, 186
CARD (Center for Autism and Communication Shutdown 12
Related Disorders) ix communication support 280, 282,
caregivers/caregiving 6, 311, 312 312
Carley, Michael John 170, 181 compensatory model 10
Carlock, William 26 compliance training 198, 310
CAS (Critical Autism Studies) 9, 211, conformism, social and political 47,
219, 307 300
catatonia 42, 47, 52, 55 context-dependence, of autistic
causation, of autism 25, 26, 95, 149, functioning 184
155, 238, 312 co-occurring conditions 9, 259, 261
 Index 323

Cook, Ian 203–204 and critiques of the neurodiversity

coping mechanisms/coping movement, 295, 298, 299
skills/coping strategies 6, 8, disability
172, 177, 178 developmental 11, 65, 82, 83, 85,
Corbyn, Jeremy (MP) 266–267, 274 180, 312
cross-disability matters 1, 2, 4, 13, medical model of. See medical
131, 200, 305 model, of disability
Cure Autism Now ix social model of, 7, 11, 32, 125,
cure movement, of autism ix–x, 8. See 212, 217, 270, 272
also “anti-cure” perspective on Disability Community Day of
autism; “pro-cure” perspective Mourning 12
on autism disability rights 3, 13, 127, 130, 196,
199, 203, 212
and Autistic Women and
D Non-Binary Network, 150–152
Dalmayne, Emma 265 disability rights activism v
DANDA (Developmental Adult disability rights motto 2, 187, 214,
Neuro-Diversity Association) 217
214 disability rights movements ix, 3, 7,
Dawson, Geraldine 224–226, 228 11, 68, 85, 141, 234, 312
Dawson, Michelle 83, 90, 95, 98, and Autistic Women and
295 Non-Binary Network, 152
DCD (Developmental Coordination disability rights paradigm 136
Disorder) 258, 259, 262–264 disability rights principle 2, 187, 214,
deficit model, of disability. See 217
medical model, of disability disability studies 3, 11, 46, 211
deinstitutionalization 195 discrimination 8, 15, 95, 153, 180,
Dekker, Martijn 2, 12, 109, 298, 307 200, 313
dementia 292 and Autism/Neurodiversity
Derber, Charles 287 Manifesto, 268, 272
Des Roches Rosa, Shannon 155, 162, and critiques of the neurodiversity
294 movement, 290, 291
desegregation 66 dispersed venues 114
developmental disability (DD) 11, Divergent: when disability and
65, 83, 85, 180, 312 feminism collide 152
developmental diversity 309 “Don’t Mourn for Us” 12, 23–37,
diagnosis/Diagnostic and Statistical 219, 307
Manual (DSM) 9, 23, 42, 90, “Don’t Speak for Us” 130
167–189, 263, 308
324 Index

DSM (Diagnostic and Statistical Exploring Diagnosis: Autism and the

Manual) 185–189, 216 Neurodiversity Movement vii–ix
Du Bois, Terri 204
Dunn, Dr. Yo 119, 281, 282–283
Durbin-Westby, Paula 174 F
dyslexia 257–258, 259, 261, 263, face blindness 45
265 Facebook 258–259, 271
dyspraxia 258, 259, 263, 293 Fair Housing Campaign 65–67
Dyspraxia Foundation 214 FDA (Food and Drug administration)
73, 203, 205
female genital mutilation (FGM) 290
Fidonet 41, 44
E “For The Many Not The Few” 272
electric shock “treatment” 196–197, “foundation documents” 217
205, 307, 311 Frith, Uta 215
emancipatory research 135 Fund for Community Reparations
Emergence: Labeled Autistic 24–25, for Autistic People of Color’s
27–30 Interdependence, Survival, and
empathy 43, 45, 148, 174, 294 Empowerment 251
empowerment 11, 97, 130, 148, 261, fundraising 5, 115, 224, 229,
311 243–244
and AASPIRE, 134, 136, 137,
140, 141
“entrapment” paradigm 28, 35 G
environmental causation, of autism 3, Geier, Mark and David 95, 97
6, 8, 96 gender/gender identity 5, 112, 134,
environmental toxins, as risk factors 151, 152, 243, 292, 307
for autism 6 and DSM-5, 168, 171, 174, 187
“epidemic, autism” 92, 94, 223, 238 Generation Rescue ix
epigenetics 297 genetics 93, 127, 225, 228, 296, 297
ethics 97, 217 Gernsbacher, Morton Ann 93
eugenics 7, 13, 125, 128, 131, 278 “Getting the Truth Out” website 12,
“Everybody Gets Paid” principle” 83, 85, 307
247–248 “Getting the Word Out” 12, 83
exclusion/exclusivity 12, 41–48, 93, Giggleswick School 113
117, 125, 216, 293, 313 Gilfoy, Hilary 278, 280
Expanding the Promise for Indi- Grandin, Temple 23, 24–29, 30, 34,
viduals with Autism Act 306
237 Grant, Kathy Xenia 30, 214
 Index 325

GRASP (Global and Regional Autistic Women and Non-Binary

Asperger Syndrome Partner- Network (AWN), 150
ship) 136, 170, 181 and Autscape, 109, 114, 115, 117
Greenburg, Carol 157, 159, 289 and Independent Living on the
Gross, Zoe 12, 174 Autistic spectrum, 46, 47
group think 300 and neurodiversity movement,
292, 293, 295
independent living 85, 224
H Independent Living on the Autistic
Haley, Boyd 93, 96 Spectrum (InLv) 41–48, 110
Hatch, Senator Orrin 235 individual model, of disability. See
health and safety 55, 61 medical model, of disability
Hiari 294, 300 injustice 8, 12, 69, 71–72, 149, 266
“high-functioning” autism 184, 294, “In My Language” 85, 98, 158
308 INSAR (International Society for
Hippocratic Oath 59 Autism Research) 229
human rights 1, 4, 59, 82, 134, 164, institutionalization 78, 93, 135,
311 195–207, 307
and electric shock “treatment”, institutions, mental 77, 78
202, 203 intellectual disabilities 5, 32, 60, 141,
292, 295
interaction badge system 112
I Internet 41–43, 45, 258–260, 266
IACC (Interagency Autism Coordi- intersectional activism 152
nating Committee) 95, 139, intersectionality 4, 251
140, 175, 230 intervention ix, 7, 8, 57, 93, 127,
ideasthesia 147 206, 278, 306
identity politics 288–290, 291 and DSM-5, 175, 185, 189
I Am Autism 131, 226, 227 IRC (Internet Relay Chat) 47, 69, 70,
impairments 7, 114, 118, 163, 261, 109
293, 310, 312 ISNT (Institute for the Study of the
and origins of neurodiversity, 28, Neurologically Typical) v, 12,
32, 35 73, 90
inclusion/inclusivity viii, 2, 4, 7, 13, isolation 26, 27, 31, 71, 169, 197,
306, 308–311, 313 198, 262
and AASPIRE, 137 Israel, Matthew 196, 202
and Autism/Neurodiversity “It’s Not a Term Paper” principle
Manifesto, 255 248–249
and Autistic Genocide Clock, 131
326 Index

J malpractice 89, 202

Jordan, Rita 57 marginalization 5, 91, 251
Judge Rotenberg Center (JRC) 3, 72, “masking” 6, 162–163, 172, 177,
195–197, 311 178, 184, 256
justice, social 4, 10, 35, 134, 137, “Master’s house”/“Master’s tools”
141, 150, 212 288, 298–299
MCA (Mental Capacity Act (2007))
60
K McCollins, Andre/McCollins, Cheryl
Kapp, Steven 168, 299 196, 202, 203
King, Jr., Martin Luther 65–67 McDonnell, John 268–274
medical experimentation 197
medicalization/medication 8, 9, 82,
L 296, 298–300
Labour, Neurodivergent 271–274, and neuroleptic abuse, 51, 52, 54,
308 56, 60–61
Labour Party (UK) 15, 116, 255, medical model, of disability 1, 7–10,
266, 270, 271–274, 308 188, 211, 278
Lawson, Wenn 54, 57, 277 and Autism/Neurodiversity
learning disabilities 52, 60 Manifesto, 259, 261
legal protections 3, 168, 169, and critiques of the neurodiversity
171–173, 183, 188, 291 movement, 292, 298
Leitch, Kevin 97, 126 medical treatment 59
Letter from a Birmingham Jail 72 mental illness 61, 199, 292
lived experience, of autism 6, 31, 33, Miller, Gregory 202
46, 233, 246, 270 Milton, Damian 218, 271, 280, 282,
Look Me in the Eye 221, 223 283
losing, but having important effects misinformation
77–85 about autism 89, 97, 128, 155,
Louder Than Words 223 158
Lovaas Institute/Lovaas, Ole Ivar ix, about disability, 158
91, 189 and exclusivity, 117, 293
“low-functioning” autism 83, 309 mission statements 91, 138, 226
“Lupron protocol”/Lupron therapy 7, mistreatment 2, 7, 80, 81
95, 96 mobilization, of the autis-
tic/neurodivergent community
viii, 10, 295
M mother-blame 11
mad pride movement 4 movement disorders 51, 52
 Index 327

MR (mental retardation) 29, 32, 79, neurotypical privilege 3, 290

80 Nicolaidis, Christina 134
Msumba, Jennifer 203, 204 Nobody, Nowhere 25, 27–29
Murray, Dinah 12, 218 “Nothing About Us Without Us”
Myers, Jennifer Byde 156, 162 principle v, 2, 158, 187,
246–247, 269, 292
and Autistic Self Advocacy
N Network (ASAN), 130
National Autism Project (UK) 15, and Autonomy (journal), 215, 218
280–283, 308
National Autistic Taskforce (UK) 15,
277, 282–283, 308, 312
National Insurance Disability Scheme
O
(Australia) 185
Oliver, Mike 7
National Journal 233, 235, 236
Open Journal Systems platform 217
Ne’eman, Ari 36, 98, 129, 131, 151,
oppression 4, 70, 135, 137, 200, 251
238, 299, 312
OSR (industrial chelator) 96, 97n2
neglect 80, 196, 222, 311
“Other Half, The” 282
Nelson, Amy and Gareth 12, 126
overmedication 4, 307
neurocentrism 296
“own world” paradigm 27, 29, 34
Neurodevelopmental Disorders
Workgroup 168, 170, 182
neurodivergences 3, 8, 10, 15, 159,
292, 299
neurodiversity P
origin of term 47 paradigm
philosophy of, 35 autism-as-tragedy 26–28, 30, 33,
politics of, 233–239 34, 91, 229
neurodiversity activism 35, 133–141, disability rights, 136
155, 294, 300 “entrapment”, 28, 35
neurodiversity advocacy 155–165 neurodiversity, 47, 261
neurodiversity.com 12, 89–99, 307 “own world”, 27, 29, 34
neurodiversity paradigm 47, 261 pathology, 261
Neurodiversity Weblog 95–99 “trapped”, 28, 35
“neurodiversity-lite” 313 Paradiz, Valerie 230
neuroleptic abuse 12, 51–61 parental grief/parental mourning 30,
neurological disabilities 4, 12, 261 33, 34. See also “Don’t Mourn
NeuroTribes 156 for Us”
neurotypical, meaning of 12 parenting practices, positive 6
328 Index

participatory research 137, 141, 306, psychogenic theories 6

307. See also CBPR (Com- psychotropics 8, 52, 54, 59, 60
munity Based Participatory PTSD (Post-Traumatic Stress
Research) Disorder) 149, 158, 204
“passing” 172 Public Knowledge Project 217
“Past, Present, and Future” 83, 85 Pukki, Heta 110, 215
pathologization 12, 99, 298
pathology paradigm 261
personal experience, of autism 6, 31, Q
33, 46, 233, 247, 270, 290, quality of life 7, 55, 95, 172, 185,
295 294
personal responsibility 288, 299
person-first language 37, 260, 261
“Petition to Defend the Dignity of R
Autistic Citizens” 94 race 4, 135, 152, 167, 171, 174, 307
physical restraint 4, 310 and first autism and race anthology,
PoC (person of color) 246–248, 250 248, 249, 251
political activism 65, 72 racism 67, 197–199, 250
politics, of autism and neurodiversity “Real Transparency” principle 249
233–239 reasonable accommoda-
polypharmacy 52 tions/reasonable adjustments 8,
“Positive Behaviour Support” 60 178, 180, 309
prejudice 96, 99, 117, 290, 293 “recovery” 25, 172, 176, 183. See also
prenatal testing, for autism 127–128, Emergence: Labeled Autistic
131 reductionism 288, 296–297
“pressure points” analysis 173 “refrigerator mother” theory 29, 296,
primary sensory disabilities 3 297
privilege 25, 27, 67, 72, 74, 165, 247, “regression”, into autism 26
312 rejection 28, 43, 198
neurotypical, 3, 290 Rimland, Bernard 25, 27, 31
“pro-acceptance” 5, 12 risk aversion, “health and safety” 55
probabilistic causality 297 risk factors, for autism 6
“pro-cure” perspective on autism 5, 9, Robertson, Scott ix, 136, 174
300 Roll Call 236, 237
proprioception 162–163 Runswick-Cole, Katherine 288, 290
prosopagnosia 45
psychiatric matters 3, 54, 65, 199,
201, 292, 298 S
psychoanalytic child psychology 11 Sacks, Oliver 89
 Index 329

Saint John’s Autism Listserv 78 single unified diagnosis, for autism

Schwarz, Phil 75, 92, 95 169, 171, 180
scientific activism 138 Skinner, B.F. 196
sedation 52, 53 social communication disability,
self-acceptance 23, 30, 312 autism as 249
self-advocacy 5, 10, 85, 131, 148, Social Communication Disorder
164, 180, 238, 310. See also (SCD) 180, 185
Independent Living on the social communication domain, in the
Autistic Spectrum (InLv) DSM-5 176, 181, 183, 185,
and AASPIRE, 138, 140 186
and electric shock “treatment”, social conformism 300
196, 199 social environment 7, 10, 313
self-definition 292 social model, of disability 7, 11, 32,
self-determination, right to 4, 7–8, 125, 212, 217, 270, 272
142, 207 social networks 11
self-diagnosis 292, 294 social norms 7
self-discovery 42, 46 social oppression 4
self-identification 292 Something About Us 278
self-improvement 222 special education 32, 180, 184
self-injury 313 “special interests” 175, 183, 185
“self-narrating zoo exhibit” phe- standpoint epistemology v, 290
nomenon 37, 215, 216 State Hospitals/State Schools (US)
sensory disabilities/sensory sensi- 79, 81
tivities 3, 26, 30, 215, 222, stereotypes 84, 125, 128
224 Stewart, Dr. Catriona 281
“severe” autism 172, 184, 309 stigmatization viii, 2, 158, 170, 186,
severity scale, for diagnosis of autism 313
167, 175, 177, 179, 183–185, and AASPIRE, 135, 140, 141
187, 309 and Neurodiversity.com, 94, 98,
service provision 167, 168, 171, 177, 99
180, 183, 185, 188 “stimming” 6, 8, 175, 185
Shattock, Paul 53 strengths, of autism viii, 8, 9, 114,
Shirley, Dame Stephanie “Steve” 280 184, 189, 307, 309
Shoemaker, Clifford 96 support needs 15, 170, 199, 308–313
Shore, Stephen 35, 214, 218, 230 Sykes v. Bayer 95
Silberman, Steve 156 “symptoms”, of autism 1, 7, 176,
Sinclair, Jim 11, 23–37, 219, 307 184, 185, 312
Singer, Alison 148 synesthesia 147
Singer, Judy 2, 46, 213
330 Index

T V
Talking About Curing Autism Vaccine Court Chronicles 96
(TACA) ix vaccines, and autism ix, 7, 8, 54, 155,
Tammet, Daniel 223 158, 223, 238, 239
thematic analysis viii and Neurodiversity.com, 93, 94,
therapy ix, 7, 60, 230, 307 96–98
Thompson, Vilissa 244 Ventura33 story website 123,
Tisoncik, Laura 83, 90, 289, 295 127–129
torture, in name of treatment Vivian, Amanda 174
195–207, 311
TPGA (Thinking Person’s Guide to
Autism, The) 13, 155, 156, W
158, 162, 163, 165, 307 Wakefield, Andrew 54, 238
tragedy paradigm, autism-as- 26–28, weaknesses, in autism viii, 7, 245,
30, 33, 34, 91, 229 293, 309
transgender 204, 292 “walking while autistic” 70
“trapped” paradigm 28, 35 Western biomedical model 8
trauma “We’ve Only Just Begun” principle”
autism as response to 188 250–251
parental, 33 “What Are the Stakes?” 180–181
suffered by autistic people, 43, WHO (World Health Organization)
134, 195, 198, 203, 212, 222 229
suffered by Judge Rotenberg Why I Dislike Person First Language
Center employee, 202 37, 219
treatment Williams, Donna 214, 223
autism 74, 96, 99 and history of neurodiversity, 23,
psychiatric, 54, 201 24, 27, 28, 29–31, 32, 33, 37
torture as, 195–207, 311 Wing, Lorna 31, 55
Treehouse 278 workplace bullying 70
Trump, Donald 238 World Autism Day 151, 239
twin studies 296 World Wide Web 42, 68, 214
Worlds of Autism 137, 139
Wright, Suzanne and Bob 227–230,
U 278
United Methodist Church 95
universal rights principles 4
Y
“You Define You” principle 248