Journal of Autism and Developmental Disorders (2020) 50:3071–3077

https://doi.org/10.1007/s10803-020-04399-2

BRIEF REPORT

Health Disparities Among Sexual and Gender Minorities with Autism

Spectrum Disorder
Jean P. Hall1,2 · Katie Batza3 · Carl G. Streed Jr.4,5 · Brian A. Boyd2,6 · Noelle K. Kurth1

Published online: 13 February 2020

© Springer Science+Business Media, LLC, part of Springer Nature 2020

Abstract
We explored the health and health care experiences of people with autism spectrum disorder (ASD) who identify as lesbian,
gay, bisexual, transgender, or queer (LGBTQ+) using data from a national, internet-based survey of adults with disabilities
supplemented by focused interviews. LGBTQ+ respondents had significantly higher rates of mental illness, poor physical
health days per month, and smoking compared to straight, cisgender respondents with ASD. LGBTQ+ respondents also
reported much higher rates of unmet health care need, inadequate insurance provider networks, and rates of being refused
services by a medical provider. Examining the intersection of LGBTQ+ identity and ASD reveals compounded health dis-
parities that insurers and medical providers are not adequately addressing, particularly as individuals transition to the adult
medical system.

Keywords Health disparities · Autism spectrum disorder · LGBTQ+

People living with disabilities, including autism spectrum bisexual, transgender, or queer (LGBTQ +)] similarly face
disorder (ASD), experience multiple, systemic barriers to multiple, systemic and long-standing barriers to appropriate
accessing appropriate health care, including lack of provid- health care (Batza 2018; Streed et al. 2019). Access to health
ers knowledgeable about ASD and fear of stigmatization, care and health disparities for people with combined ASD
which consequently contribute to poorer health outcomes and LGBTQ+ identities, however, are not well understood.
(e.g., increased morbidity and early mortality) (Krahn et al. To better understand the health and health care access
2015; Nicolaidis et al. 2015; Bishop-Fitzpatrick and Kind experiences of all adults living with disabilities after imple-
2017). Sexual and gender minorities [i.e., lesbian, gay, mentation of the Affordable Care Act, two of the authors led
the development and administration of the National Survey
on Health and Disability (NSHD) (Hall and Kurth 2019). In
* Jean P. Hall exploring respondent demographics, the authors noted a high
jhall@ku.edu rate of self-reported LGBTQ+ identities among people with
1
Institute for Health & Disability Policy Studies, University ASD. This co-occurrence has been noted by other research-
of Kansas, 1000 Sunnyside Ave, Lawrence, KS 66045, USA ers, especially internationally and among adolescents with
2
Department of Applied Behavioral Science, University ASD (e.g., Turner et al. 2017). Given the health disparities
of Kansas, Lawrence, KS, USA for LGBTQ+ individuals and those with ASD, we sought
3
Department of Women, Gender and Sexuality Studies, to explore whether the intersectionality of these two groups
University of Kansas, 318 Blake Hall, 1541 Lilac Lane, was associated with poorer health than seen among people
Lawrence, KS 66045, USA with ASD alone. Therefore, this paper reports preliminary
4
Boston University School of Medicine, 72 East Concord St, results from the first administration of the survey in 2018,
Boston, MA 02118, USA focusing on findings related to respondents with ASD who
5
Center for Transgender Medicine & Surgery, Section reported being LGBTQ+ as compared to respondents with
of General Internal Medicine, Boston Medical Center, ASD who were not LGBTQ+.
Boston, MA, USA
6
Juniper Gardens Children’s Project, University of Kansas
Life Span Institute, 444 Minnesota Ave, Ste 300,
Kansas City, KS 666101, USA

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3072 Journal of Autism and Developmental Disorders (2020) 50:3071–3077

Methods with ASD who identified as LGBTQ+ experienced worse

health and health care access barriers compared to straight,
The NSHD is a national, internet-based survey fielded cisgender respondents with ASD (Table 2).
between February and June 2018. Participants were LGBTQ+ respondents with ASD were more than twice
recruited through more than 50 national and state disability as likely to self-report a mental illness/psychiatric condi-
organizations, multiple national listservs and newsletters, tion and reported twice as many poor physical health days
national disability conferences, and social media. Respond- per month compared to straight, cisgender respondents
ents represent Americans with a wide variety of disabilities with ASD. LGBTQ+ respondents with ASD also reported
between the ages of 18 and 62 years-of-age. The total sample smoking rates almost ten-times those of straight, cisgender
size was 1246. Quantitative data were analyzed using SPSS respondents with ASD (26.3% versus 2.9%, respectively,
version 24. p < 0.05). At the same time, LGBTQ+ respondents with
The survey includes questions from other national public ASD reported significantly higher rates of college com-
and private survey instruments such as the Behavioral Risk Fac- pletion. While all LGBTQ+ respondents with ASD and
tor Surveillance System (BRFSS), the National Health Inter- most straight, cisgender respondents with ASD reported
view Survey (NHIS), the Health Reform Monitoring Survey having health insurance, LGBTQ+ respondents with
(HRMS) and questions previously used by the authors (see ASD reported much higher rates of unmet health care
Table 1). The entire survey was pilot-tested by people with a need, including seeing a doctor or specialist and obtain-
variety of disabilities. For most respondents, the survey took ing prescriptions. LGBTQ+ respondents with ASD were
about 20 min to complete, but skip patterns can result in vary- also significantly more likely to report that their insurance
ing numbers of questions for respondents and overall time to provider network was inadequate. In turn, they were sig-
complete. The inclusion criteria for participation in the survey nificantly more likely to report that a doctor/provider did
included: (1) giving a “yes” response to the question, “Do you not accept their insurance. More troubling is the fact that
have a physical condition, mental illness, impairment, disability 35.7% of LGBTQ+ respondents with ASD reported being
or chronic health condition that can affect your daily activities refused services by a medical provider (compared to 20%
or that requires you to use special equipment or devices, such of straight, cisgender respondents with ASD). Refusal of
as a wheelchair, walker, TDD or communication device?”; (2) services by a provider was reported separately from non-
being ages 18–62; and (3) residing in the United States. coverage by insurance or providers not accepting insur-
Additionally, we conducted five semi-structured tel- ance (see Table 1); the majority of LGBTQ+ respondents
ephone interviews to better understand experiences of peo- who reported being refused services by a provider did not
ple with ASD who identify as LGBTQ+ and to contextual- report that insurance did not cover the service or that the
ize survey data. This interview sample was part of a larger provider did not accept the insurance. This finding regard-
sample of working age adults with all types of disabilities ing refusal of services was affirmed by interview partici-
recruited through the same disability organizations as for pants, without direct prompts.
the survey (Hall et al. 2019); interview participants may or
may not have completed the survey. Content analysis (For-
man and Damschroder 2007; Hsieh and Shannon 2005) was Interviews
conducted to identify major interview themes from the larger
interview sample (Hall et al. 2019). Themes for the ASD Content from interviews with individuals identifying as
and LGBTQ+ subsample were derived separately using the LGBTQ+ and having autism was used to better understand
same methods and are reported here. The average length of and augment the quantitative findings from the survey.
the five interviews was about 37 min (range 22–47). Themes arising from the interviews included inadequate/
The University of Kansas IRB approved all survey and inappropriate care from the medical system, with three
interview data collection and study procedures. All partici- interviewees reporting being refused medical services
pants in the study provided informed consent. outright. Four interviewees reported deciding not to dis-
close their diagnosis of ASD and/or sexual orientation or
gender identity due to previous negative experiences; and
Results one contrasted how access to services differed with private
insurance versus Medicaid. Selected quotes from inter-
Survey viewees are included below by theme.

A large proportion of respondents who self-reported ASD

also identified as LGBTQ+ (35%, 19/54). Respondents

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Journal of Autism and Developmental Disorders (2020) 50:3071–3077 3073

Table 1  Survey and interview items utilized in this study

Interview items Prompts, as needed

Please tell me about your current health insurance coverage • How long have you had this coverage?
• What kind of insurance did you have before, if any?
• Does this coverage have a deductible, co-pays, co-insurance, other out-of-
pockets costs?
Please tell me about any challenges or barriers you have encountered in getting the • How is the provider network?
health care that you need • Do you have visit limits on any services?
• Do you have coverage for prescriptions you need?
• Do you use personal assistance services?
• Is transportation ever a barrier?
Have your employment or decisions about working or how much you want to work
been affected by your health insurance or access to care? How so?
What one service of support is most important or crucial for you to have in order to
maintain or improve your health so you can live independently and do the things
you want to do in your community?
What information do you need regarding health insurance options? And/or where
do you get information about your current coverage?
What would you like to tell policy-makers about access to health insurance and
health care services for people with disabilities?
Survey items Possible responses

Health ­statusa
In general would you say your health is… Excellent; very good; good; fair; poor
Thinking about your physical health, which includes physical illness of injury, 0–30
for how many days during the past 30 days was your physical health NOT
good?
Thinking about your mental health, which includes stress, depression, and 0–30
problems with emotions, for how many days during the past 30 days was your
physical health NOT good?
Access to health ­careb
In the past 12 months have you been able to get all the prescription medications Yes; No; I don’t know; I do not take any prescription medications
you need with your health insurance plan(s)?
A specialist is a doctor who focuses on a specific disease, such as heart disease Yes; No; I don’t know; I do not need to see any specialists
or cancer, or a particular technique, such as surgery or gynecology
In the past 12 months have you been able to see the specialists you need to with
your health insurance plan(s)?
In the past 12 months, have you been able to get the dental services you need Yes; No; I don’t know; I do not need to see a dentist
with your health insurance plan(s)
Preventive health services are procedures and tests that can detect certain condi- Yes; No; I don’t know; I choose not to get preventative health services
tions or diseases and should be conducted regularly. Examples of preventive
services include mammogram, bone density, colorectal screening, pap smear,
PSA blood tests, etc
In the past 12 months, have you been able to get all the preventive health services
and tests that you need?
A provider network is a list of the doctors, hospitals, and other health care pro- Yes; No; I don’t know
viders that an insurance company uses to provide medical care to its members
In the past 12 months has the provider network for your health insurance plan(s)
been adequate enough to meet all your needs?
You reported that you were not able to get some of the medical services or equip- Could not afford it/too expensive; my insurance would not approve or pay for
ment that you have needed in the past 12 months. What are the reasons for this what I needed; doctor/provider would not take my insurance; problems get-
unmet need(s)? ting to the doctor/provider’s office; language/communication barriers; could
Mark all that apply not get time off work to go to the doctor/provider; I don’t know where to go
to get services; I was refused services by a provider; I could not get child care
so I could go to appointments; did not have enough time or it took too long to
get the needed care; I don’t know; other reasons (if selected, open-ended text
box provided for response)

a
Behavioral Risk Factor Surveillance System (BRFSS), CDC
b
Health Reform Monitoring Survey (HRMS), The Urban Institute

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3074 Journal of Autism and Developmental Disorders (2020) 50:3071–3077

Table 2  Survey respondent demographics, insurance coverage and unmet needs experienced by adults with autism spectrum disorder by
LGBTQ+ identity
Characteristic LGBTQ+ (N = 19) Non-LGBTQ+ (N = 35) pa

Respondent demographics
Mean age (range), years 31.1 (20–49) 30.2 (18–58) 0.747
Gender, %
Female 36.8 40.0 < 0.001
Male 26.3 60.0
Other 36.8 0.0
Education Level, % with college degree 68.4 35.5 < 0.05
Race/ethnicity, % non-white 31.6 20.0 0.342
Disability ­typeb, %c
Autism spectrum disorder 100.0 100.0 1.00
Mental illness/psychiatricd 78.9 34.3 < 0.01
Chronic illness/diseasee 47.4 31.4 0.247
Physicalf 21.1 5.7 0.087
Neurologicalg 10.5 22.9 0.265
Intellectual or d­ evelopmentalh 5.3 25.7 0.105
Sensoryi 0.0 2.9 0.475
Smokes or uses tobacco products 26.3 2.9 < 0.05
Days physical health not good out of last 30, mean 11.1 5.1 < 0.05
Days mental health not good out of last 30, mean 17.7 14.0 0.236
Insurance ­coveragej
No insurance coverage, % 0.0 8.6 0.171
Employer-sponsored insurance, % 38.9 42.9 0.781
Through family member’s employer, % 57.1 66.7 0.254
Marketplace purchased insurance, % 15.8 0.0 0.001
Medicare, % 10.5 20.0 0.282
Medicaid, % 47.4 55.9 0.552
TRICARE/VA, % 10.5 5.7 0.0519
Unmet need with ­insurancek
Unable to see a doctor, % 47.1 12.5 < 0.01
Unable to get needed prescriptions, % 38.9 10.0 < 0.05
Unable to see necessary specialists, % 40.0 12.5 < 0.05
Unable to get preventive health services, % 35.7 11.1 0.059
Inadequate provider network 56.3 22.2 < 0.05
At least one unmet need of those listed above, % 73.7 43.8 < 0.05
Reasons for unmet needk
Too expensive/couldn’t afford, % 57.1 60.0 0.407
Insurance would not cover/approve service, % 50.0 73.3 0.540
Doctor/provider would not accept my insurance, % 50.0 20.0 < 0.01
I was refused services by a provider, % 35.7 20.0 0.058
It took too long to get needed services/care, % 21.4 40.9 0.283

a
p value calculated using chi-square and ANOVA
b
Respondents self-reported their disability or chronic health condition in their own words. These data focus on those who reported autism spec-
trum disorder with additional conditions listed by respondents being categorized into 6 additional types by two of the authors
c
Total does not equal 100% due to respondents reporting more than one disability or health condition
d
Mental Illness/Psychiatric category includes conditions such as bi-polar disorder, schizophrenia, major depression, disassociate identity disor-
der, anxiety, etc.
e
Chronic illness or disease category includes conditions such as cancers, diabetes, COPD, Ehlers-Danlos syndrome, cardiovascular disease, HIV/
AIDS, etc.
f
Physical category includes conditions such as muscular dystrophy, achondroplasia, osteoporosis, arthritis, limb loss or amputation, etc.
g
Neurological category includes conditions such as multiple sclerosis, cerebral palsy, spinal cord injury, Parkinson’s, spina bifida, ADHD, trau-
matic brain injury, paraplegia, quadriplegia, epilepsy, stroke, etc.
h
Intellectual or Developmental category includes conditions such as Down Syndrome, Fragile X syndrome, and other intellectual disabilities

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Table 2  (continued)
i
Sensory category includes conditions such as deafness/hard of hearing, blindness/low vision and/or partial blindness or deafness
j
Total does not equal 100% due to multiple response, as some individuals reported more than one type of insurance coverage
k
Valid n varies due to skip patterns based on responses to earlier questions, i.e., if respondent reported being able to get all needed services, he or
she was not asked reasons for unmet need

Inappropriate Care Non‑disclosure

• “If I’m just a queer disabled person and I’m just going to • “I have a much worse quality of care if a medical pro-
my regular provider, not only are they going to assume vider knows that I’m autistic, so none of my providers
that I’m not having sex, but they’re also not going to know… There is a… difference in… how I understand
provide any accurate information there.”—gay, white, my peers have been treated, my siblings, how my younger
cisgender male, age 32 brother is treated. So, when I was a teenager and had my
• “I’ve actually, literally, never had an OB/GYN exam and parents with me, health care providers refused to speak
I need to, and I think one of the reasons I’ve never had with me, to give me any information.” gay, white cisgen-
one done is because I was fucking seeing a pediatrician der male, age 32
[at age 23]… because didn’t you know that autistic peo-
ple become adults?… It’s also really difficult even for Insurance Coverage
assigned female at birth nonbinary to be able to access
gender affirming OBGYN, that’s why I’ve been putting • [after obtaining Medicaid] “I’m getting better health-
off finding an OBGYN for so long. Because I know that care than I was [with employer-based coverage] by far.”
it’s going to be really fucking difficult to find an OBGYN transgender African American, age 39
who is affirming of my nonbinary identity, and who is
not going to, like that nurse practitioner [they had seen With regard to insurance and access to services, the sur-
earlier], just keep referring to me with highly female gen- vey findings indicate that LGBTQ+ respondents with ASD
dered language. Um, which is really dysphoric for me were more likely to have private insurance (i.e., employer-
and makes seeing the provider at best a very unpleasant based or ACA Marketplace) while straight, cisgender
experience. And at worst like actively kind of traumatiz- respondents with ASD were more likely to have public
ing.” —non-binary, Asian, age 25 insurance (i.e., Medicare or Medicaid). In combination, the
• “They [medical providers] need to listen to disabled peo- survey data and interviews suggest private insurance less
ple but respectfully with an open mind. And they need adequately covers the medical needs of LGBTQ+ persons
to not do things like assume that just because someone’s with ASD, who reported much higher rates of unmet need
autistic that they don’t understand their gender iden- and inadequate provider networks than did other respondents
tity, that they can’t be like, oh you can’t be transgender with ASD. Findings could also suggest that providers who
because you’re autistic.”—genderqueer, African Ameri- accept Medicare and Medicaid are better prepared to care
can, age 40 for people with ASD alone, given this group’s lower rates
• “The questions they [medical providers] ask you are of unmet need and refusal of services.
still very hetero-normative, are still very cis-normative.
And you aren’t receiving health care as a queer or trans
person, you’re treated as you appear to be. And so even Discussion
though there are queer people within the system, it’s still
not set up to address those issues.” non-binary, white, age While prior studies have found high rates of people with
32. ASD identifying as LGBTQ+, these studies were primar-
ily conducted outside of the US, focused on children and
adolescents, and rarely considered barriers to accessing
Refusal of Care appropriate health care for this age group (Turner et al.
2017; Glidden et al. 2016; de Vries et al. 2010). Further,
• “They actually do cover trans healthcare here in [state], while other studies have noted worse health for LGBTQ+
but it varies, the scope of who you can see, the doctors people who also have disabilities, none have focused spe-
are flooded because there are only 1 or 2 doctors in the cifically on LGBTQ+ people who have ASD (Burgwal
entire region. You can go to a regular doctor and they’ll et al. 2019; Fredriksen-Goldsen et al. 2013). Indeed, a
refuse your care.” transgender African American, age 39 recent scoping review of health disparities for people with

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3076 Journal of Autism and Developmental Disorders (2020) 50:3071–3077

ASD (Bishop‑Fitzpatrick and Kind 2017) specifically a possible limitation of the study is that it relies on self-
noted the dearth of research on health disparities for this reported disability types, including self-reported ASD.
intersectional population. While most research on sexual orientation and gender
Together, the survey data and focused interviews make identity for people with ASD focuses on youth, respondents
a compelling case that American adults with ASD who to this survey are adults and utilizing the adult medical sys-
also identify as LGBTQ+ lack adequate health care ser- tem. Insurers and medical providers have a responsibility to
vices and experience worse health than their straight, cis- continue meeting the needs of this intersectional group into
gender peers with ASD. Despite having higher educational adulthood even as the fraught historic relationship between
attainment, the ASD/LGBTQ+ group reported greater medical providers and LGBTQ+ people, with and without
rates of mental illnesses and smoking and poorer over- disabilities, makes it more challenging. Medical profession-
all health. These findings are in direct contrast to a large als should be mindful of the challenges that adults with ASD
body of work demonstrating better health and lower rates encounter in accessing health care services and seek to make
of depression and smoking among individuals with more their practices welcoming and inclusive (Warfield et al.
education (e.g., Conti et al. 2010). Drilling down into the 2015). Health disparities for the newly recognized intersec-
data, we found that four of the ASD/LGBTQ respondents tional group of people with ASD who are LGBTQ+ will
(21%) and 1 of the ASD-only respondents (3%) reported only improve if such changes to the adult medical system
having post-traumatic stress disorder. Given the docu- are made.
mented higher rates of PTSD among sexual and gender
minorities (e.g., Roberts et al. 2012), it seems likely that Acknowledgments The National Survey on Health and Disability
(NSHD) and national interviews are part of the Collaborative on
at least some of the greater incidence of mental illnesses Health Reform and Independent Living (CHRIL). CHRIL is funded
in the LGBTQ+ sample is related to their LGBTQ+ status. by a 5-year Disability and Rehabilitation Research Program (DRRP)
Overall, however, it is difficult to disentangle which factors grant from the National Institute on Disability, Independent Living, and
specifically and directly contribute to worse self-reported Rehabilitation Research (NIDILRR, #90DP0075-01–00). The contents
do not necessarily represent the policy of NIDILRR, ACL, HSS and
health and access to care for this small subpopulation of you should not assume endorsement by the federal government.
LGBTQ+ people with ASD.
At the same time, interview findings suggest that reluc- Author Contributions Study conception and design as well as data col-
tance to seek health care by this population may be linked lection, analysis and interpretation were performed by JPH and NKK.
to previous negative experiences and attitudes of providers. The first draft of the manuscript was written by JPH and all authors
read, edited, and approved the final manuscript.
Interestingly, some interview participants felt that medical
providers were more accepting of gender and sexual minori-
ties, “I would say it’s harder to find a provider who is sensi-
Compliance with Ethical Standards
tive to disability,” while others felt that their providers were Ethical Approval All procedures performed in this study involving
more accepting of people with disabilities, “medical profes- human participants were in accordance with the ethical standards of
sionals and those within the health community are way more the Institutional Review Board at the University of Kansas (Study#
aware of disability issues because it is all so health-related.” 00004253) and with the 1964 Helsinki declaration and its later amend-
ments or comparable ethical standards.
Sometimes, though, the issues were inextricably linked, such
as providers doubting whether a person with autism could
truly understand his or her sexuality. Overall, the interviews
suggest there is inadequate training of health care profes-
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