Spectrum

Produced by and for Autistic people

The

Edition 104 October 2020

 The Spectrum

The Spectrum is run by and for autistic adults This magazine was founded as Asperger United
(although some parents subscribe on behalf of in 1993 by Pamela Yates and Patricia Howlin,
their under-sixteens). The magazine aims to in association with the Maudsley Hospital,
connect autistic people through their letters and and Mark Bebbington and Judy Lynch of the
articles and to share information so that they can National Autistic Society.
lead more independent lives.
This was in response to a recognised dearth
Please note that the Spectrum receives many of services for people with Asperger syndrome
letters each quarter so it is not possible to and the potential for self-help and networking as
respond to every one, nor for every contribution a means of support for this group.
to be printed. Discussions on editorial choices
will not be entered into. The magazine protects The provisions for editor’s and sub-editor’s
the identity of contributors by not printing full post was to develop a publication that was truly
names unless the writer asks for their full name to the voice of the people it was aimed at. This post
be used. also provided the possibility of work experience
and responsibility and has benefited those who
The Spectrum is available at have held the position. These are Richard Exley,
www.autism.org.uk/thespectrum David Wright, Martin Coppola, Ian Reynolds,
or by paying a subscription. To subscribe you, we John Joyce and the current editor, the Goth (who
need your postal address. Please subscribe online does not wear black).
or contact the Goth for a subscription form.
All contact details are below. Organisations Pamela Yates provided support and advice to
requiring multiple copies: please get in touch. the editors until the publication was handed over
to the National Autistic Society in 2000.
Editor: the Goth
The name Asperger United was chosen
National Autistic Society production support: by the group of original readers as the most
the Content Team “appropriate name” for the publication.
This was suggested by Anna Kaczynski. The
NAS phone support: the Supporter Care Team
name the Spectrum was suggested by dozens of
NAS database support: the Data Services Team people and chosen in an online poll in 2018.

Please send all correspondence and subscription requests to:

Email: the.spectrum@nas.org.uk All we need is your email address and we will

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The Goth
c/o The National Autistic Society Please note that the views expressed in the
393 City Road Spectrum are not necessarily those of the editor,
London the National Autistic Society or those involved in
EC1V 1NG the publication of the magazine.

Tel: 0808 800 1050 (free from most landlines) or Tel: 020 7923 5779 (geographical charges apply)

The Spectrum is available inlarge print on A3 sheets (double the size of this page). If you need
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Contributions for the next issue should reach the Spectrum by 9 November 2020
2
 editorial

Welcome to the October edition of the (needing an outlet for feelings?) have been
Spectrum. submitted since the pandemic hit. And more
nostalgic pieces, such as appears on the back page
It’s possible that all aspects of the lockdown here.
will have been lifted by the time you read this,
but while I am writing, things are still fairly Face masks are clearly a problem for many
restricted around me. people with anxiety, whether or not they are
Autistic, so do let me know about any coping
Most — perhaps all — of us have had strategies you use. As I mention on page 10,
difficulty coping with the lockdown: this was it is likely to be a year or more before a stable
evident from the very stressed submissions I “new normal” develops. In the mean time I will
received for the July edition, but I am pleased to continue to struggle to buy everything I need in
see that some much brighter pieces were again just one shop a week, how about you?
being submitted for the October issue.
Yours,
I also noticed that more long pieces (more
time at home?), more art, and more poetry the Editor

the lockdown edition — suggestion for next issue on page 9

Contents

Third eye. . . . . . . . . . . . . . . . . . . . . . . . . . . . . cover Dogs’ walks – article by David . . . . . . . . . . . . . . 11

art by Taylor Garland
www.graygarland.com How canals helped me to recover from. . . . . . . . . 12-13
clinical depression and helped me to cope with
What do you see in a cloud? . . . . . . . . . . . . . . . . . 4-6 a diagnosis of Asperger syndrome
feature by the Pixidustlady article by Tim Price

Pen pals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7-8 Book review by Kayleigh . . . . . . . . . . . . . . 14-15

Daring greatly by Brené Brown
To mask or not to mask . . . . . . . . . . . . . . . . . . . . . 9
. . . that is the question! Change in the workplace . . . . . . . . . . . . . . . . . . . . 15
article by Kayleigh article by Andrew

Letters to the Editor . . . . . . . . . . . . . . . . . . . . 10 How I learnt to stop worrying and . . . . . . . . . . 16-18

one about coronavirus and love lockdown
also about masking from article by Daniel
Tom, and
one about exhaustion from Rachel The rules of the Spectrum . . . . . . . . . . . . . . . . . . 19

Poem with accompanying letter . . . . . . . . . . . 11 Asperger United delivery day . . . . . . . . back cover
by Zimin poem by Matthew
3
 feature

What do you see in a cloud?

by The Pixidustlady

© The Pixidustlady 2020

Change is the only true charity shop. I loved it, and and then proceeded to ignore
constant in life. Recently, two really invested in my new life: all the recommendations that
innocuous, unrelated things things were going really well. were made. I carried on for a
happened to me on the same Until it all changed. while, but it was obvious they
day. They collided in my mind, wanted me out, so I handed in
creating a cusp that I’m now Head office brought in a my notice. I’d lasted nineteen
teetering on the edge of. A new retail manager. There was months, which was actually a
cloud and a questionnaire have all sorts of extra paperwork. personal best for me.
forced me to reconsider how I New competition opened
define myself as a person. I’ve up next door, affecting After six months off my
tried to record my experience donations and takings. Within savings have run out: I’m
of this change in the hope it three months I’d lost all my re-entering the workforce.
might help me connect with autonomy and was under I like work. It’s good to be
you now. constant pressure to increase busy and feel useful. But my
sales. I got stressed, flustered new job comes with a lot of
Four years ago, when I got and short-tempered. I couldn’t paperwork, contracts and proof
my Asperger’s diagnosis, it felt sleep, compounding my of my eligibility to work in the
like the conclusion of a lifelong constant worries. I felt like UK. There’s also a medical
quest: I’d always known I was I was drowning, trying to questionnaire for HR. It
different, and now I knew why. keep up with everything and feels intensely invasive, but I
I had my answer, my reason. everyone. I hated myself for answer with my usual candour.
I was relieved, but also afraid. failing. My mind was chaotic: Then I reach a section about
I didn’t see myself as I was on edge all the time. disability. I’m struck by two
disabled at all, but I knew The tiniest problems would questions: “Are you registered
people without experience reduce me to floods of tears. disabled?” and “Do you
or understanding might see In the end I was completely consider yourself disabled?”
Asperger’s as a label and make overwhelmed and just shut Both questions deal with one
assumptions. down: locking my door, issue, but they approach it from
turning off my ’phone and different perspectives. The
At the time I made only hiding from the world in bed. first asks how society sees you:
one change: I moved from an external view. The second
crowded London back to The doctor signed me off asks how you see yourself: an
rural Scotland to be near for three weeks with anxiety internal view. Like the two
family. This simplified life, and doubled my medication to faces of a coin, these two
but otherwise, I carried on as help me sleep. I had calmed perspectives are inextricably
normal. I tried different things down, but all my joy and attached, yet opposite at the
for work, short-term temporary enthusiasm was gone. When same time.
contracts, before landing a I went back to work,
dream job I thought I’d keep head office insisted on an “You’re disabled under the
until retirement, in a local occupational health assessment Equality Act 2010 if you have a
4
 feature (continued)

physical or mental impairment strips of sky, clouds became Fluttering leaves in the
that has a ‘substantial’ and unremarkable; just scudding foreground of my garden broke
‘long-term’ negative effect on between buildings, like a TV the spell. There was wind,
your ability to do normal daily on in the background while which ignited my curiosity: how
activities.” you do something else. Until could the cloud be so still in the
that morning. presence of a breeze?
Reading this definition I simply had to reconcile this
planted a seed of doubt in I’d sat down in my question: I’m compelled to
my mind. I begin to question armchair to drink my morning figure out how things work in
my definitions. Could my coffee. Directly in my eye-line, order to feel satisfied and calm.
being unable to maintain framed by the central section I needed more information,
regular employment without of my window, was a beautiful more clues to solve this
succumbing to crippling stress great cloud. I could only stare. mystery. I wanted a better view
be classed as a “substantial The longer I did, the more the of my cloud in its wider context.
negative effect”? My bright sunshine illuminated
propensity to dissolve into every detail of its boundary My usual walk takes me
tears as a coping mechanism in space. A heap of bulbous down to the beach, but this
has always become an issue billows seemed to emerge time I turned the other way.
in every job, no matter how from the cloud’s fluffier, wide- I climbed to the crest of the
hard I work to make up set base, captured like the hill, revealing my favourite
for it. Persistent emotional beginning of an explosive dust vista. I could see our house
breakdowns due to stress have cloud frozen in time. Different nestled amongst its trees in
become “normal” for me over shades of white and grey the village, the beach curving
the last twenty-five years. The resolved to purples and yellows below, the sea and more islands
older I get, the more “long- before my eyes as I studied its beyond, hazily stretching all
term” this situation becomes. textured surface. the way to the horizon. The
I’m suddenly confronted by the landscape was lush: green
fact that my “normal” doesn’t Most striking, however, fields, hills purple with heather,
match most other people’s. was its absolute stillness. the sea a deep blue. The white
Could there be a possibility It was as though it had been sand of the beach was marked
that, by this definition, painted straight onto the by tide lines of black seaweed.
wider society might class my glass, to be curated into this Wind turbines were spinning;
experience of Asperger’s as a sublime gallery experience, a red tractor ploughed in the
“disability”? Could they be especially for me. I couldn’t fields. Grey stone houses
right? look hard enough as my gaze punctuated the landscape,
was transformed into that of with the occasional window
The only reason I was even a great painter: I could feel a reflecting a flash of sun.
entertaining these notions was work of art straining to burst
the riddle of a cloud I’d solved forth from my talentless heart. From my lofty vantage
a few hours earlier. Living The cloud almost filled the point, right up under the flat
on the edge of the Atlantic restricted field of the frame, bases of the clouds, their
means I’ve experienced some hanging so utterly motionless shadows were clearly visible
serious weather: the wind it began to seem solid, across this familiar patchwork.
here can be epic. Growing up and immovable. The inert My cloud still hung like a crisp
in this environment nurtured crispness of its distinct form meringue in the uninterrupted
my love for endless skies and gave it an uncanny weightiness, expanse of the sky. I could
vast cloudscapes. Later, years even as my mind told me it hear the birds chattering their
of city living dampened my was just water vapour. I was songs, a bumblebee buzzing
appreciation. With only narrow enchanted. about his business with the
5
 feature (continued)

dandelions, the slow steady From an external never managed it yet, so maybe
whirring of more windmills perspective though, other now it’s time to admit I never
turning behind me. The Sun’s people have a clear view of me. will.
warmth and this soft drone of They can see I have a distinct
life soothed me into a state of form and plenty of edges. I see now that the potential
meditative contemplation. My They can see me coming. ramifications of my diagnosis
cloud seemed to loom large My presence sometimes have been gradually moving
over me. The threshold of its casts a shadow and leaves towards me for a long time,
shadow had advanced across them cold. Sometimes I can looming ever larger in my
the landscape. Thus, the penny blot out their sunshine with consciousness. Maybe it’s time
dropped! my grey mood. Sometimes to make a real change. Maybe
I can be thunderous and I’m ready to see myself from
I had been facing into stop a heart with one bolt an external perspective, just
the lightest, gentlest wind the of lightning. Sometimes I like I saw that cloud. Maybe it’s
whole time: the cloud was blanket them in a thick layer time to define myself in a way
moving directly toward me. of frost and snow so my heart other people can recognise and
This fluke of trajectory had can hibernate beneath, just understand by accepting a label
disguised its stately progress to survive. Eventually, I rain I wouldn’t choose for myself.
through the sky. My relief was tears over everything to relieve Maybe acknowledging the
instant and palpable. Trust in the pressure that has built reality of how people perceive
my own senses was restored. up inside me. Neurotypical me from a neurotypical
A single cloud had shown people have a way to describe perspective will turn out to be
me that only by changing my people like me that makes the key to striking a balance
perspective and taking the sense only to them: mentally between my internal and
time to really observe life was disabled. external struggles, as I continue
I able to solve the riddle of its trying to connect with people
imperceptible movement. I’m not here to argue for or and participate in life.
against whether their label is
This lesson was still fresh fair or accurate. But if they’re The concept of
in my mind as I came to fill going to make me tick a box synchronicity allows for people
in the medical questionnaire and choose, just so that they to find meaning by connecting
later that day. I didn’t expect can feel more comfortable, random events. Seeing that
to find an existential crisis in maybe there’s something in it cloud on the same day I read
some routine paperwork, but for me. By realising there’s a those two questions was just
the cloud and the combination stark difference between how a coincidence. But it was my
of the two questions met in I see myself and how others Asperger’s brain that linked
my mind and got me thinking. see me, I’ve discovered that the two things in such a way
That cloud was a metaphor my diagnosis is not the ending as to find a valuable insight in
for me, for my life. Internally, I thought it was. It turns out their combination. Adopting a
living with Asperger’s is I didn’t complete a race: it label and admitting I need help
like existing inside a cloud. was just the first stage of a to function in a society geared
Everyone and everything they triathlon. I became so good towards neurotypical minds is
do is confusing, I’m totally at performing “normal” for not me moving into what some
surrounded, without any everyone else, masking my might consider the shadow of
reference points, or anything to true self, that I tricked myself disability. This change is me
anchor to. I’m lost in my own into believing it was true. stepping out into the light so
grey fog, with no idea where Work has always proved it’s everyone can see who I really
my boundaries are, or what impossible for me to maintain am, and all the beauty I hold
shape I am. that façade permanently: I’ve within my form.
6
 pen-pal page

Pen pals
How to place a pen-pal
advert
> All you need to do is send your advert along with
your name and address (and email address if you
want) to this magazine. You can use the Royal
Pen pal number 321 Mail or email. The next pen-pal number will be
given to your advert when it arrives.
Hi everyone, my name is Brandon.
> Please note that this magazine does not print dating
I am 21 years old. I was diagnosed with adverts, as it is unable to provide suitable support.
autism when I was 5 years old.
> Those under the age of sixteen must have parental
I am currently doing an apprenticeship at permission before placing a pen-pal advertisement
LearnPlay Foundation, in media. in this magazine.

My interests are going to the cinema,

> If you get no replies, please don’t take this personally.
watching films, playing video games, going
on my computer and spending time with my How to reply to pen pals
family.
> Please remember to let us know the name and
Thank you for reading this and I hope to number of the person whom your letter is for. (All
hear from you. pen pals are numbered by the editor, not the person
who sends in the advert.)
> Please remember to put your address on your letter.

Pen pal number 322 > To contact a pen pal, please send your letter to
the Goth, c/o The National Autistic Society, 393
Hi, my name is Martha, I’m 20 and I’ve City Road, London, EC1V 1NG, or email
been diagnosed with Asperger’s recently. the.Spectrum@nas.org.uk
> We will pass your letter on to the person you wish
I’m interested in science, particularly to contact. However, we cannot guarantee the
biology and specifically ecology. I love person will reply as that is entirely their decision.
animals and have three dogs, two tortoises
and a fish tank. > Please note that all pen-pal letters sent via this
magazine are opened before being passed on.
I love animated shows and movies,
particularly stop-motion animation and **Important notice —
­ please read**
cartoons. I also like to collect antiques and
interesting vintage things, and I’m currently This magazine is happy to publish pen-pal
at university. advertisements but we must stress that we are not
a pen-pal or introduction organisation. We do not
Contact me if you’d like to talk! match people up and we cannot monitor letters
(other than the first letter, that is sent via us) so
please be cautious when releasing personal details
in your letters. The National Autistic Society / the
Twenty-four pen-pal adverts have been held over for Spectrum cannot intervene or be held responsible for
publication in the next five issues, Editor. any ensuing correspondence between letter-writers.
7
 more pen-pal adverts

Pen pal number 323 Pen pal number 324

I’m Adeinne, 28 years old with Asperger Hello! I’m Lisa! I am from Wales and I have autism.
syndrome from Scotland and am hoping
by placing this advert in the Spectrum that I see the world in colour, from touch to sounds
somebody will have similar interests as to tastes, and especially music. Every letter and word
myself, then hopefully they will reply has a colour. I can never get away from it. It’s called
then we can hopefully form a friendship synaesthesia, a “disorder”. I don’t like to think of it as a
which would be lovely, especially as I find disorder: autism isn’t a disorder either. That’s just what
it challenging to make friends and I don’t they call people they don’t understand. It makes it hard
mean to be rude or that but I think for me to learn because I think differently and I have
I would prefer email rather than letters. to unjumble patterns and colours in my head to make
sense when I speak, which can make me appear slow
My interests range from watching when I actually think very fast. Memories and smells are
TV — especially quiz shows, the Simpsons, in colour too, and when the patterns and colours don’t
documentaries, crime/police/ambulance make sense I can have sudden mood changes until it’s
shows, and I enjoy watching Hollyoaks too. right in my head again. I can get so angry or so, so sad
I also have a huge passion for animals, because of it and it’s destroying my life because people
as they are such great creatures, so I don’t understand and think it’s aimed towards them. But
enjoy spending time with them or just this is something I could never just explain to someone
watching a cat or even just birds from so quickly as I’m still trying to understand it myself.
the window. I enjoy watching videos on
YouTube, which I do nearly every day, as Basically I’m looking for someone else who has
I probably spend way too much time on synaesthesia and how they manage daily life, as I find
the Internet in general but it is something it quite a struggle sometimes. And incredibly lonely.
I enjoy. I enjoy playing video games too Because I’ve never been able to just talk to someone that
on my Nintendo Switch and Playstation 4 understands why I feel blue with purple stripes or why
consoles, especially racing games, Mario someone’s voice is in Eь major. I just want someone that
games, Overcooked 2, puzzle games or understands and won’t dismiss me like everyone else does
just even the Sims 4, which I play on my just because I’m different. I wish more than anything that
computer. I really enjoy adult colouring I wasn’t, but I am, and I’m happy. I would love to make
books, as I find it very relaxing to do, friends with anyone really. I hope this doesn’t sound
although I do want to try adult dot-to-dot desperate — I’m actually usually a happy, bouncy person!
books too as I haven’t done a dot-to-dot It’s just that I’ve recently been told that I have autism,
puzzle in years. I enjoy puzzles from a although not properly diagnosed yet as I have been on a
simple word-search, crossword or a simple waiting list since I was 11 and it’s made such a difference
word game I can play on my computer. and makes so much sense. (Like my hypersensitivity to
One of my big passions is going to the things.) I would love to find someone like me.
theatre, where I’ve seen some amazing
shows, such as Hairspray, Joseph and the I love music, and I play piano. It’s all so colourful and
amazing Technicolor dreamcoat, Cats, We will how the notes blend together, it’s like painting! I love
rock you and Annie. I enjoy Disney as to read and am currently rereading the His dark materials
well, from collecting the merchandise to trilogy. Spongebob was my childhood, haha. I love
visiting the theme parks or just watching a nature and the outdoors, and animals! I love animals —
movie, of which my current favourite has I guess that’s why I’m studying zoology! I’m at university
to be Toy story 4 that I saw in the cinema. now, and just getting used to it, although it’s hard.

Thank you and have a lovely day. I would love to hear from someone!

8
 an article and a notice

To mask or not to mask . . . that is the question!

by Kayleigh

For the disabled community there are many I feel as though we are given a lose-lose
continuing problems with the pandemic, even as decision to make: either we don’t wear a mask
lockdown lifts. The one I wanted to talk about and receive disgusted looks, judgement and
today is masks. ableist comments, or, we wear a mask and feel
uncomfortable, distressed and overwhelmed just
Masks for me are a nightmare: they give me for the sake of avoiding the first choice. (This
sensory overload, panic attacks, communication can apply to both physical mask wearing and
struggles, and depth-perception problems. It just metaphorical masks, both of which can be awful
isn’t working out. I work in a Post Office, so it experiences for a lot of us!)
has been quite controversial; I also take a train to
work, which is double trouble. I also can’t wear Initially I did try wearing a mask, only on the
visors for almost all the same reasons. train to and from work but I decided it wasn’t
worth the distress and implications, especially as
For any of you that have the same sense of we are exempt due to government guidelines.
distress over it as I do, please check out Hidden I have had to face a lot of challenges with people
Disability website, they have some lanyards that judging me for it. Some don’t think I’m disabled
are nationally recognised so you don’t have to enough; some don’t think it’s fair that they have
disclose your disability all of the time. to, and I don’t; some think I am risking everyone
else and should be forced to. Why should I wear
It is frustrating and it feels very ableist when a mask on top of my metaphorical one when that
you are questioned about why you aren’t wearing already causes me so much distress that I can’t
a mask because for most of us it isn’t obvious cope with it?
from the outside and I am also finding that, as
an Autistic person, it is extremely difficult to Maybe try and contact the NAS Helpline
explain as I get easily overwhelmed and become for advice — it is natural to feel anxious and
mute at times. Especially as people ask in a very conflicted about this topic. We are all in this
invasive and judgemental way. I have found that together, we all understand the struggles you face
people don’t believe Autism is a disability and is with this and are here for you. I hope that those
a valid reason to not wear one. I have received strong, brave, influential Autistics (and anyone
comments from people complaining that they else that supports us) will stand up with us and
“don’t like” wearing them either so why should help spread the word that we are not like others,
they have to and not the disabled community. the playing field is not even, and we need extra
Which just brings a whole new level to ableism support and accommodations to march through
and frankly it is exhausting trying to educate life at a similar pace to everyone else. Stay safe
everyone. out there.

If sufficient material is sent in, the theme for will be the theme. Writing on any subject is
January will be the new normal, after the still welcome as are ideas for new themes, and
pandemic. Vote with your contributions: the artwork. Remember, if you want to see different
more submissions on a subject sent in (from content in the Spectrum, the best way to change it
different people) the more likely that that subject is to send something in!
9
 letters to the Editor

Hello Goth, (Partly) in response to Lauren

please find below thoughts on the coronavirus and It’s one of the most insidious aspects of
a thought (partly) in response to Lauren (from the being autistic in an un-autistic world:
previous issue). people don’t see you trying and assume
you’re lazy (keep in mind that uninformed
It doesn’t seem to me that the coronavirus crisis assumptions say everything about the
is over: the number of infections and hospitalisations person making the assumptions and
will likely continue to fluctuate, creating a state of little, if anything about the person the
uncertainty that the whole world is now feeling. In assumptions are about). This is repeated
a sense everyone else is experiencing what it is like so often and from such an early age that
to be autistic in a “normal” world. Unfortunately we internalise it and start seeing ourselves
the uncertainty (and sometimes confusing rules and as lazy. We are not. You are not, Lauren.
regulations) affect us even more — well, me anyway. We do try, and sometimes, just sometimes,
you meet someone who understands that.
Where would we want to be in a post-coronavirus I think you’ve “met” quite a few of those
future? I think the lockdowns revealed that being people here, people who read the Spectrum
cooped up in a small, noisy apartment is very different with your article and thought, “Yep, I
from being cooped up in a roomy house with a garden. know how that feels.”
Living in such an apartment is rarely a choice if you’re
low income. Some people manage nicely, but many
don’t, so one change I would very much welcome would Hi,
be to make it possible for people of all incomes to seek
out people of similar dispositions and have them create I have Asperger’s syndrome. When
a living environment that suits them. Not necessarily I get home from work or another social
bigger houses, but a grouping of people of similar setting, I feel mentally exhausted that I
dispositions: quiet people with quiet people, loud people need a short nap to rejuvenate my system.
with loud people, people who like to do DIY when I usually avoid socialising because I am
everyone else is forced to be at home with similarly not good at such. Is my mental exhaustion
antisocial people. caused by information processing or
is it also a result of sensory issues? Do
For another thing, let’s hope that, after being other people with Asperger’s syndrome
collectively and indiscriminately cooped up like this, experience the same? If I don’t have a
there will be more attention paid to the variety of short nap when I get home after being
humanity: diversity in inclination, skin colour, gender, in a social setting, I tend to get irritable.
neurotype, sexual preferences, and so on. Humanity I fall asleep really quick when mentally
comes in so many forms, let’s hope that the fact that exhausted and I feel energised again when
the virus doesn’t discriminate between people (unlike I awake after an hour or so. I am a single
protective measures and access to testing) contributes parent and my child is designated a young
to a world where these diverse forms can be celebrated carer to me because she is affected by my
instead of suppressed. diagnosed Asperger’s syndrome (and other
conditions) — it’s been tough but we have
Tom managed to cope and manage the best as
we can since we have no other support
To give you more certainty, please note: local lockdowns and other from anyone else.
restrictions will very likely continue well into 2021. “The new
normal” gets mentioned, because it is possible that things will never Sincerely,
quite return to the old normal. Many of us will find these changes
stressful, Editor. Rachel
10
 a poem and an article

Dear Madam or Sir,

Dogs’ walks
I’d like to submit a poem to the next Spectrum issue but am
unclear of the rules. Can it be on any topic? by David
I’ve written about my devastating experience of being
excluded from my church for two years due to my autism and I am “walked”. I do not have
comorbid anxiety and depression, although the poem is much autonomy. The halter is placed
subtler. It is however rather religious. Is that allowed? It is only around my neck, and I am
five stanzas long. The epigraph can be omitted. “walked”. I do not have a say in
the matter. I have as much say in
Thanks for your kind help and clarification. the matter as the halter, which, I
understand, was placed around the
Zimin necks of miscreants, those who
transgressed, and who were then
Any topic is allowed, although some readers object to religious pieces, pulled up before finally falling
especially things that can be construed as proselytising. As many people have down never to rise again.
turned to the church for solace during the pandemic, I feel that including this
now is very appropriate, Editor. And when it comes right down
to it, should we also be used in
figures of speech, metaphors,
The LORD is a God of judgment: blessed are all they that wait allusions, proverbial ___ bite, ___
for him. (Isaiah, chapter 30, verse 18) bark, sleeping ___, “let slip the
____ . . .” All right. I’ll let that go
— it was, after all, the top dog of
Sweet promise! All I now desire literature who coined it.
For will, for cause, for light.
For evil hearts why fret and tire It started with the dawn of
When God dost fight my fight. — what? Human understanding
in . . . oh, can we put a number
The Lord a God of judgement is: to it? When were we kidnapped
All they that wait are blest, from our wolfish beginnings and
E’en they that glean not what they sow; then forcibly adapted to be canine
His justice is my rest. chums?

Vestured in still mightier seats, There has been, however, a new

These boast Thy pride and favour. development of which you should
Yet Thou their flood, my quiet ark all be aware. I refer, of course, to
Art, through my meek endeavour. The call of the wild, which we now
hear once more, as in the recent
What greater sorrow than His Son case of Chernobyl. The Worker
To crucify again Town has become a sarcophagus.
By men who once prostrate did vow to We are now strays. You can adopt
By His sheep remain. us, if you like. We were left behind
when you left us, or, as you call
Fret not thyself, my sinful soul; it, abandoned the site for safety
Thy Father dear dost weep reasons. You can no longer spey,
Where’er His child her brother rents neuter or vaccinate us. We are
From His loving mercies deep. rabid. We are also radioactive.
11
 an article

How canals helped me to recover from clinical

depression and helped me to cope with a diagnosis
of Asperger syndrome

by Tim Price

When my brother and I were young, my mum Our first cruise on a hire boat
and dad used to arrange holidays with our
friends from Sussex. During one of these The first narrowboat we went on was called the
holidays we decided to try a walk along the canal Windsor Castle. It was ten-berth, built by David
at Tyrley Locks, just south of Market Drayton, Piper, although that did not mean anything to us
because this had been recommended to us (and then. We shared the boat for a holiday from the
was free!). Peak Forest Cruisers base on the Macclesfield
Canal.
We went in our cars to Tyrley Locks and we
were impressed with the canal although we knew There were two families, the Jarvis family and
very little about it. the Price family: we were children, aged between
six and ten. The Prices had the front of the boat
We started to walk down from the top lock and the Jarvis family had the back; there was a
towards Market Drayton when a long narrowboat, galley (kitchen) in the middle. It was an ideal
which we subsequently discovered was the old, layout for two families with young children.
converted, working narrowboat boat, Beatty, was
working down the locks (a famous boat in canal We all got on very well indeed, we had a great
circles). time on the canal system. The Windsor Castle was
a 62-foot narrowboat which we booked again in
The people were very friendly and they 1982, the following year.
offered us a lift on the boat: my brother went on
Beatty but I did not want to go on it. The first The bridge holes and especially the locks
experience of a boating trip was in 1979; it was seemed very narrow but we learned to steer
very different from a working narrowboat: it had reasonably well — there was a good deal of
a rabbit in a hutch at the front. “poling off” when we got stuck on the bottom.

The boat was travelling to the IWA (Inland We did the Four Counties Ring as
Waterways Association) National Rally at recommended by Mr Palmer, the owner of Peak
Northwich. We went to the Festival on Saturday Forest Canal Cruisers.
and we saw Beatty again. It was quite exciting
because there was a bomb scare during the The weather was glorious, hotter than our
afternoon. friends from Sussex expected, and we really
enjoyed the holiday.
We were able to go on several boats, including
hire boats. We were amazed at the spaciousness We went on three more canal holidays, two on
of them. the Macc and one on the Oxford (Mum and Dad
also went with other friends on the Lancaster).
We really were keen to find out more about
canals from there on and decided that we must This was getting expensive so we decided to
hire a boat. buy a boat.
12
 an article (continued)

I would really recommend a boating holiday In 1993, just after I came out of hospital,
to other people. The canals are very different my mum and dad bought a forty-foot, David
from 1979 or even 1981 and 1982: there is less Piper, narrowboat called Slowcoach. They bought
boating traffic and there are less working boats it so that the three of us could all go on holiday
on the canal. together in a good environment. I really like the
wildlife on the canals and I have learnt how to do
the locks.
1984 Picador
We went to Worcester and I had a big steak-
Our first boat was a 24-foot canal cruiser called and-kidney pie in a pub, and I ate it all: people
Picador, which was very small. It was all steel with clapped when I finished it. I would not be able
an inboard, single cylinder, Petter Diesel engine, to eat it now because I am older and don’t eat
built by Black Bull Engineering, no shower, no so much. I find it very nice to have meals on
stove, but it got us along the cut. It had wheel the boat but I also enjoy pub meals. We went
steering which took a bit of getting used to at on many cruises with our friends. They bought
first. It was moored on the Peak Forest Canal at a boat called Florence Rose. I haven’t been for a
Furness Vale. holiday on the boat for a few years but I’m hoping
to go again soon. The last time I went was on the
Our first cruise along the Peak Forest, Ashby canal.
down the Macc, the Trent and Mersey and the
Middlewich branch to Venetian Marine was Some years ago we went along the Leeds and
interesting, we turned 360 degrees in the wind a Liverpool Canal to Burscough. I had a pint of
couple of times. beer called Old Peculiar which was five per cent
in alcohol, very strong for me. I liked it so much
We stayed at Venetian Marine for a while and I went back for another pint. My dad called the
then got a mooring nearer home at Middlewich. beer “Wobbly Tim”!

We often went past the pub called the Big Nowadays I write books which are published
Lock and we went along the Middlewich branch by chipmunka, the mental health and wellbeing
and had days out with friends during the early publisher.
years of owning a boat.
I have now had ten books published by
When we had Picador it was very different
from the Windsor Castle which we hired for the chipmunkapublishing.co.uk
first two canal holidays. It was much smaller and
had fewer facilities but we loved it and enjoyed They are:
taking friends and family out for the day.
How to improve mental health (this can be ordered
We explored the local canals and went to from any bookshop, worldwide)
Chester and on the Caldon canal. My Middlewich
My insight into the world of computers
The Olympic Games, London 2012
Slowcoach
My memories of Manchester United
After I left school I went to college in Crewe, but The World Cup, 2018
found it very difficult to adapt to a new routine. The changing world of mental health
I became clinically depressed and had to spend Olympic Games, Rio 2016
time in hospital. Eventually the doctor found a My view of mental health services
suitable medication for me and I was able to come Improving care in the community (this can be ordered
into the community and cope with life again. from any bookshop, worldwide).
13
 a book review

Daring greatly

by Brené Brown

published by Penguin Life

ISBN: 978 0 24125 740 1

£9.99

review by Kayleigh

Brené Brown challenges believes we need to cultivate the issue, but not forget that
vulnerability and bravery. She shame resilience and be achievements are important
proves how it is a strength vulnerable instead. too and it is helpful to express
to be vulnerable and how that appreciation or support.
to incorporate a little more Her research proves that Otherwise the receiving party
vulnerability into our daily vulnerability isn’t weakness feels they cannot be vulnerable
lives. She uses twelve years and that it takes courage to be and ultimately feels inferior,
of research across home, vulnerable. She defines it as as though their hard work isn’t
relationships, work and uncertainty, risk and emotional appreciated.
parenting. She drew the exposure. Being vulnerable
phrase “daring greatly” from is sharing creativity, loving My mentor recommended
Theodore Roosevelt’s speech someone, trying something this book to me: she knows
in 1910, “If he fails, at least new. Being vulnerable means I am a very anxious person
he fails while daring greatly”, to dare greatly and let yourself and I like to celebrate the
which means to be bold, brave be held up to a magnifying small achievements and each
and subsequently vulnerable. glass, allowing yourself to time I handle something that
She breaks down vulnerability be put up for the judgment makes me uncomfortable, it
from all stages of life and of others. I really liked the really is the perfect book for
teaches what she calls “shame section about “sitting on the someone like me. It helped me
resilience”. same side of the table”: she to understand how vulnerable
explains how feedback needs I can be on a daily basis and
This book is incredible, vulnerability and that both how others struggle to be.
I highly recommend. It is parties need to be vulnerable I have been trying to rebuild
one of the best books I have in order to have a successful my self-esteem (which some
read in the last decade. She outcome. She explains that days is easier than others) and
explains how to be vulnerable only criticizing someone or I have found it challenging
we have to deal with our leaning into anger because each time I have been told I
shame to develop “shame it is far easier than being did something wrong or
resilience” because we can’t vulnerable is unlikely to have I am not appreciated because
be ashamed if we want to be a positive outcome, whereas if someone thinks what they’ve
vulnerable. She breaks down you “sat on the same side of done for me is more valuable
perfection and how it is an the table” and took the time to I beat myself up about it and
unattainable goal. Instead she both listen and communicate let myself shoulder blame and
14
 a book review (continued) and an article

misdirected anger from others, at things in my own way and them fascinating, like I do) give
causing more anxiety. I am successful because I this a read: it’s a really good
I know I have grown up trying manage the difficulties no one insight into how other people
to live up to everyone else’s else can see while soldiering might think without even
ridiculously high standards, on every day. I hope one knowing it!
but as an Autistic woman day people will learn to be
I know that I shouldn’t be vulnerable enough to treat me I rate this book ten out of
put up to the neurotypical as equal while also respecting ten, absolutely fantastic:
standard. I took away from and listening to the things I am so grateful for my mentor
reading this book a new-found I find challenging. recommending it to me! Each
self-respect, I am not perfect, day try to be vulnerable, try
and I have tried all my life to If you are Autistic and you something that scares you,
be as good as everyone else, struggle to understand other tell someone you love them,
but in actual fact I am good people (or maybe you just find express yourself! Dare greatly!

Change in the workplace

by Andrew

There is a misconception about autistic people making arbitrary last-minute decisions with the
that we don’t like change. Whilst this may sole purpose of getting irrational meltdowns.
apply to some of us at different degrees, such This can happen at any size company, so please
as a spectral condition allows for, this does not speak up if this approach is taken at yours.
apply to everyone. For me, change is something
that is multi-faceted: what the change is, when A workplace’s attitude to change, especially
the change happens and why the change has with respect to their autistic communities, is
happened (and to whose benefit) are always absolutely essential for any company. Foremost,
something that pops to mind in the split-second it is important to acknowledge that a change has
that I detect a difference. taken place and, if it has caused upset, that the
employer asks themselves what they have done
The “old” stereotype is that autistic people to mitigate its impact. This lies with all parties,
are very rigid, and why only 15% of us can get from managers to those affected by the change to
work. They cannot adapt to new norms, such those who wish to get to the root of a problem.
as workplace or organisational restructuring. If a change is needed, the culture and values
Unfortunately, according to my own personal of the organisation should first be considered.
experience, this stereotype still persists. Change is a good thing, but only for the right
Previously, I worked for a large employer who reasons.
would make disruptive, last minute changes
against my best interest whilst refusing to explain I think awareness of this fact is essential for
themselves or even believing that they were employers to take on board, as it allows for a
wrong, despite professional guidance that they sense of ownership of change and for a culture
were. These changes were things like meetings that attracts and retains autistic people. This
changing topics just as I entered them, so that begins with intelligent, rational conversations and
I have no time to prepare; changes to attitude bringing all parties onto that level of discussion.
that contradicted basic decency; changes in stance That way, not only can the autistic community be
(caring one minute to not caring the next); and accepting of change, they can also be that change.
15
 an article

How I learned to stop worrying and love lockdown

by Daniel

Like a lot of people on the Firstly, there was a big feeling, I was developing a
autism spectrum, change for me change in staffing. I used to vicious cycle where I felt like
can sometimes be an arduous work as a team of two on the I was underperforming for
process. During my time in frontline of this service, but my family and my girlfriend,
the workforce and the type of my colleague left for another and although my family were
young-adult upbringing I have post in the hospital. As a duo, understanding, my relationship
had, I do think I can process we were able to manage the with my significant other was
and accept change more readily. workload incredibly well. The breaking down fast.
I work in a section of the NHS trouble was the management
that can at times, feel like a did not get permission to I’m told when I’m anxious,
retail post. I administer key replace them, and one doesn’t my Asperger’s symptoms
services, answer calls and take fit into two as well as people show more, and I think that
questions from medical staff might like to think it does. is correct. I don’t have a lot of
that can sometimes change to Suddenly I was running around outward physical traits.
the point it feels like liquid, haggard after every request, I don’t stim or melt down.
rather than the safe, solid block desperate to keep up the high I just panic and avoid anything
of the request that was originally standards we provided. It was that might stand a chance of
asked of me. Red becomes blue, a job primarily at a desk, but I having a negative effect, even
up becomes down . . .. was suffering physical burnout when it could be extremely
and my mental state was being helpful. Most people I meet
In other words, I’m used battered as the work just did and socialise with don’t even
to change, to the point where not stop piling in. Have you know about my condition, let
sometimes the change can be ever tried to catch a waterfall alone claim that they “see”
a good thing, no matter how in a bucket? One thing that it in me. I’m essentially a
much of an upheaval it brings. did offset this was that my chameleon. I don’t want to be
managers were very supportive. a chameleon, but I just don’t
I take no pleasure in saying They knew how tough it was trust the people around me
this. It feels like I’m being too out there and were always would accept who I am and go
positive in the context of a encouraging. right back to treating me as the
global tragedy, but for me, the person I was before the label.
sudden changes in my life that For various other reasons
covid-19 wrought on us all could I was redeveloping symptoms I know I can really behave
not have come at a better time. of anxiety. I thought I had it like a neurotypical adult with
crushed and conquered for so some slight social miscues.
I like my job. I used to love long, but like any insurgency it Therefore, when I do get
my job; but before the virus will rise again when given the nervous it’s like there is
gripped the country, I was push. I put a lot of pressure another side to me.
radically losing the joy in the on myself to be the optimum,
occupation I once had. It’s perfect person for everyone Because of the external
important to note why this was given the circumstances. pressures going on, over
the case as I outline my case I hadn’t long started a distance- time I certainly felt a greater
for being happy during the learning master’s degree and anxiety about going out to
pandemic. because of the anxiety I was places, spending time with
16
 an article (continued)

my partner, and whenever lunch on your own in a room affect me anyway, but it has
there was any dialogue that full of people who only liked been a nice touch. My social
felt even remotely combative, you when they needed you. activities moved online and
my mind would regurgitate I could work in my ideal were largely unaffected. In
the negativity and crank it to environment. I sat on my other words, the almost serene
eleven. This happened too chair, I listened to music on nature of my home life was
often. The outward displays the job. I could slip outside to causing the big foggy bubble
of my autistic traits caused the the supermarket nearby if the of anxiety in my head to slowly
relationship to break down queues were short. It was work fade away, even if the changes
further, to the point where we how I wanted it to be. came very abruptly.
agreed on a “break” in early
March to try and work on our The social aspects of Because this was
negative feelings and possibly the virus were also oddly happening, I came to some
reconnect after some time. Did beneficial. The lockdown realisations. I realised that
I say I was doing a master’s meant that it wasn’t possible I was slowly killing my mental
degree on top of all of this? to resolve my relationship state with my high-pressure
Fitting in essays around the struggles one way or the lifestyle, and sooner or later
destruction of my relationship other, as we agreed to do something was going to give.
and increasing work stress was that in person. The closing I was driving a car towards a
not helping. shops meant I had fewer cliff-edge at full speed, but the
distractions. Although I have lockdown slammed the brakes,
Then coronavirus was a great relationship with my pulled up the handbrake and
confirmed in the UK. family, I talked to home more clipped me around the ear for
during the lockdown than being such a terrible driver.
Almost overnight, before it. It was a negative that I identified some changes
everybody’s lives had turned I couldn’t see my family, but I could make and began to fix
upside down. On 23 March, I do understand that there is myself.
my type of work was outlined going to be a pot of gold at the
by the Prime Minister as a end of the pandemic rainbow. I am doing the bare
place that had to shut down At present, the thought that minimum in credits per year
and if possible, work from we will eventually be able to to pass my university years.
home. Our work had been see them again is what has Grades-wise I am still shooting
preparing for this, and we had been keeping me going in this for the Moon, but I am taking
a tangible, if imperfect, plan to regard. This lockdown isn’t workload and pressure off my
carry on with what services we forever. back doing this. I have applied
could provide. I went into the to a mental-health provider for
hospital on 24 March to close After I did one big shop help with my renewed anxiety
our physical space, and from to get some extra food in case and I am being treated for it.
25 March I was turning on the I developed any symptoms, My girlfriend and I have just
PC in my living room to work. I stopped worrying about started online relationship
going to my local supermarket counselling, and signs are
Remember when I said frequently. When I did, I was initially positive. I’ve stopped
that some change can be a very happy waiting in socially- thinking I have to be perfect
good thing? I could work distanced lines knowing that for everyone. For my job there
without having the constant when I got in, I could do a is no change, but I’ve been
distractions of staff to throw shop that wasn’t crowded, that telling myself that I am not
you off your current task. had most people respecting obliged to prove my worth to
I didn’t have to deal with the personal spaces and conscious people. If they don’t want to
crushing loneliness of eating of hygiene. These things didn’t be around me, I’m not forcing
17
 an article (continued)

it just because I think that’s of working from home more trickiest aspect of autism is
right. I’ve given myself more of often once we are back in the that no two individuals are the
a voice to object if I feel that’s office. I’ve been told we will same. There isn’t a one-size-
necessary. get our staff numbers back, so fits-all policy, something we
once that is in place, I’d like to will have heard all too often.
With a theme of push for more working from I think it is a strong statement,
uncertainty, change and how home. The more relaxed day but as the affected individuals,
to cope, I can only offer advice will work wonders, even if it it may be best placed upon us
on how I personally have been was on a once-a-fortnight basis. to work out how best to adapt
coping with change. I am not to the changes of lockdown.
a scientist in any regard, and On a smaller level, this I don’t mean this to be harsh at
my advice won’t be everyone’s is a good chance to find new all, far from it. I just feel like if
panacea. I remain hopeful, things you like about yourself something is bothering us, we
though, that somehow I can and the world around you. For should say it, no matter how
change someone with my tales example, I used to have a bit of small it might be. Whether it
and advice. an aversion to drinking tea. can be made possible or not
I could drink it, but I just didn’t is usually going to be down
Use some time for fancy hot drinks in general. to circumstances beyond our
introspection. As mentioned, Now I can’t bear to imagine control, but as long as the
I realised some flaws in my going back to work without interaction is civil, positive and
character and started planning having a morning brew! I have at least sets the stage for future
to resolve them. I feel it’s also taken to appreciating the conversation, we’ll feel better
important to add that if there space around me more. I live for saying it.
ever needed to be a reset in a rented flat located in a
button on life, this could be it. parish just outside a big South- I’m going to be glad when
If you felt before that you were Eastern town and every other the lockdown is lifted and I
unable to enact change or felt day I go for a walk admiring can see my family again, but
nervous about the plan, why the scenery. I find it relaxing I’ll always remember the time
not resolve to work on it if you and the perfect complement I was confined to my flat, and
can’t do it during lockdown? to a quiet day of working at how it saved me.
As soon as we’re able to, home. I’ve also taken to soft
we’ll head back to work, plan jazz music.
holidays and look to the future
as we always did. This is a Finding a hobby or
chance to do it as a stronger project would also be a
individual with changes in good idea. I didn’t do this
mind. one so much because
I have been stuck working.
As an extension of this, I would have loved the
is there anything from the chance to identify some
lockdown you would like to big project or artwork
keep or try to retain going to complete and work
forward? I’m certainly going towards that. It would
to be sad when my local keep a loose routine and
supermarket goes back to the gives a focus instead of
usual hustle and bustle, but despairing.
I accept that is beyond my
control. One thing I am going It’s hard to advise
to try is to push for the chance beyond this point. The
18
 stuff you might like to know about the Spectrum

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The Spectrum
magazine

Asperger United delivery day

a reminiscence

by Matthew

Lands on my mat this magazine of challenge,

Spent of its bullet-force, Collector’s now,
Analyst’s, Champion’s, Antihero’s, Mine;
Sole, remaining, propulsive, potential effect.

This Tablet will help save my soul! This

Private Eye re-arm with cream-cake fun,
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Beano, begin again. Ript timely, this
Last king of Scotland eat me whole.

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