Spectrum

Produced by and for Autistic people

The

Edition 105 January 2021

 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: [email protected] All we need is your email address and we will

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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
large print, please let us know using the email address or postal address above.

Contributions for the next issue should reach the Spectrum by 15 February 2021
2
 editorial

Welcome to the January edition of the Inevitably, I then start singing This too shall
Spectrum. pass by OK GO, and then watching the videos
on YouTube — they did not one but two award-
While I am writing this (in November) winning videos for the one song. Their video of
no sign of change in the pandemic is visible. them dancing on treadmills is pretty good too.
Different parts of the country are going into and
coming out of various lockdowns and semi- And so I find myself several hours later,
lockdowns, case numbers are up, down, and up having binged on videos. Another day it might be
again, and it looks completely unknowable when repeats of Mythbusters or Time team. I know this is
this situation will end. because of the stress, and I want you to know that
you are not alone or unusual in this. Times can be
For many people, Autistic and non-autistic hard, but they will get better.
alike, all this is very difficult to deal with, and I
find myself repeating the adage from thirteenth- Yours,
century (and possibly older) Sufi poetry, “This
too shall pass.” the Editor

the new normal edition — suggestion for next issue on page 9

Contents
Isolation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . cover Why being self-employed is a great career option. . .12-13
painting by Ian article by Virginia

Lockdown through autistic eyes . . . . . . . . . . . . . . . . . 4 Aickman . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14-15

feature by Samuel article-cum-book-review by Tony

The new normal . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 The Autistic Adult Choir . . . . . . . . . . . . . . . . . . . 16

feature with accompanying letter by Nick notice by Jill

On the spectrum of acceptance and improvement . . . . . 6 Carved blocks . . . . . . . . . . . . . . . . . . . . . . . . . . 16

by Joshua anonymous art

Pen pals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7-8 Notes from my diagnosis and . . . . . . . . . . . . . . 16-17

Notes from my life
A kind of spark . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 paired poems by harri
by Elle McNicoll
book review by Kayleigh Perplexed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
poem with accompanying letter by
Letters to the Editor . . . . . . . . . . . . . . . . . . . . 10 Matthew Lacey
one about Zoom fatigue from E Hill,
one in response to Zimin from Sue, and The rules of the Spectrum . . . . . . . . . . . . . . . . . . 19
one about work from Vickie
Outdoor living project . . . . . . . . . . . . . . . back cover
Twenty years of solitude – article by Tom . . . . . 11-12 notice by Ruth
3
 feature

Lockdown through autistic eyes

by Samuel

When I heard that lockdown was first occurring I often look at myself with thoughts about
in early 2020, in late March, I was partially making hard and emotionally painful choices.
mortified. I knew that I was going to end up I tell myself, “You need to decide which
being denied my freedom and suffer additional choice feels like the worst one out of the two,
stress from the annoying activity from some of and choose the other one, regardless of the
the residents I was living with. consequences. Choose the lesser of the two
severe examples.”
One resident would every day play his music
loud and start singing out of tune. The constant In a case like this one, you need to suffer
and endless noise was unbearable and ridiculous lesser negatives to stay alive. Do what you need
enough for me to frustrate over. to do to survive.

Lockdown is, in a sense, the equivalent of The covid-19 disaster has clearly killed more
prison, only you’re not sharing your cell with than a million people, and England was probably
violent criminals that commonly threaten your said to have suffered the worst level of it. That’s
body and existence with their harmful and violent what I perceived from what people were saying at
capacities. I’d say it’s like serving a sentence in a the time.
prison for falsely accused cellmates who are not
truly dangerous enough to belong there. During the opening stages of November
in 2020, I was made aware that the disease was
It can be frustrating for me, sometimes, approaching Kent and that we’d be forced to
especially without coping techniques that I reinstitute the inevitable possibility of lockdown.
hadn’t yet developed at the beginning of this Another lockdown was ordered by Boris Johnson.
lockdown era. It can be even more frustrating
and unbearable for people with less capacity and When the announcement was made on TV,
understanding than I have. I confess I wasn’t that upset, as long as we had a
deadline for its final stages. And once those final
Some people have kicked off because of this, stages were reached and breached, the lockdown
I’d imagine. would be removed. The date for that was said to
be the second of December.
On the other hand, the staff, the support
workers and everyone else who supports people There’s always light at the end of the tunnel,
like us have made it well-understood that if they as some people occasionally say. Light often
let us out, worse things would happen to us. represents hope, whereas darkness represents the
Fatal severity, I mean. And by that, I’m referring opposite: despair and hopelessness.
directly to death. It was either death or a difficult
journey back to normal. Even though lockdown isn’t yet over, I hope
it ends soon. And, as I know, many people hope
Sometimes you do get very difficult and the same.
frustrating choices to make and often the best
one still causes problems, whereas the other one All we can do is wait, or even take advantage
leads to a worse path, one which even has the of waiting, by any means possible in our own
possibility of traumatising you. individual cases.
4
 featured letter and accompanying article

Hello,
The new normal
I share your feelings about Lauren’s moving
letter about the pain and confusion that Autism by Nick
brings.

On the subject for October, I like many people The new normal is one of checking the
have suffered from the lack of support during ever-changing rules as to what you may or
lockdown. I lived in a town where I had no family or may not do today. Being able to stick to our
friends so that made it even harder but, thankfully, routines has become even more difficult but
there were some people willing to help with access it does prove even more comforting when we
to the Internet and advice. My biggest issue is the can slip in to our comfort zones and recover
supermarkets and a lack of understanding. Yes, it from the neurotype world. However, it does
has been a tough time for shop workers and I have make the small things in life so much more
witnessed verbal abuse being hurled at them. But I rewarding and I now enjoy the delights of
have been at the receiving end of verbal abuse back cycling in a group of six and not having to
simply for asking for a little understanding and that deal with so many riders around me when
having four staff shout over each other does not on the road. It does make the café stop
help me understand any better. Having to try and so much easier, as I find the conversation
explain about eating a rigid diet was a strain and simpler to understand and can add my own
people simply cannot accept that I am unable to eat contribution. I have found a face mask I can
the suggested alternative product as I struggle with wear and do not have to put up with being
new and unfamiliar textures and tastes. Thankfully, judged. The new normal can be hard when
the shelves are almost stocked up now so I am able trying to explain to a young staff member
to buy wholewheat pasta again. that I am unable to use a phone and therefore
cannot download the NHS app or provide a
I find having dyspraxia a big problem as staff do phone number, just an email. This normally
not understand how it affects my co-ordination and results in strange looks and requests for a
trying to use the escalator in store was a big worry landline number. Thankfully I have an alert
as I felt like I was being launched from it and not card and this does allow me to explain more
simply stepping off so I asked to use the stairs as about not having a phone and staff are then
this was safer for me. Going up the stairs was not understanding.
too bad but trying to walk down was scary as my
balance is not good. I did ask to use the designated Shopping has become easier now that
disabled door but this was worse than the work the shelves are stocked and there is no panic
capability test with some staff even though I wear a buying. Now we are used to queuing and not
sunflower lanyard. Not all the staff refused to let me having people stand too close which is a bonus
pass and some were kind and full of understanding. for us on the spectrum. Some stores are now
advertising the sunflower lanyard scheme and
At the start of lockdown, we saw the real society that not all customers can wear a mask so
as people came together to support and help others hopefully this will help to avoid unpleasant
but sadly this goodwill has not lasted and now I see situations.
the return of the nasty and selfish people — maybe
they have been isolating for the last three months? I hope that the new normal will allow us
Now it is back to being shouted at for saying excuse to develop a voice and not be pushed to one
me. Covid will go but how will it change us I side and forgotten about as happened during
wonder, for the better or worse? lockdown. That there will be more support
offered when and if local lockdowns are put in
Nick place.
5
 an article

On the spectrum of acceptance and improvement

by Joshua

Discovering as an adult that I am autistic has Take two of my behaviors, to illustrate: cheek-
meant reframing the cornucopia of my life-long biting and balancing.
struggles. For example, I have shitty fine-motor
skills; I suck at balancing; I sometimes look away Since I was a kid, I have only received
in conversation; I bite my cheeks; I have sweaty negative remarks around my cheek-biting: “What
extremities; I am pained by bright lighting; I are you doing?”; “Stop doing that”; “That looks
repeat things spontaneously. weird”. Many of these came from my dad,
teachers or professors.
Or, I’m weird; I’m awkward; I’m different; I’m
flawed; I’m gifted; I’m wrong; I’m special. Well. It’s been twenty-plus years, and I haven’t
been able to stop, so where does that leave me?
The best thing about this discovery? I’ve
finally identified a single “cause” for every single This is precisely where the power of
one of the above labels and behaviors! acceptance comes in.

The worst thing about it? Asking myself: Improvement failed in this case. I tried to
which of my labels or behaviors will I now accept quit biting my cheeks, and I couldn’t.
to fit, and which will I reject to improve?
So I’ve made peace with that and the adults
That’s not to say that I can’t accept who I am who shamed me otherwise.
now, future improvements aside. I can and do
(try to). I have not — on the other hand — accepted
that balancing is a lost cause for myself, instead
What I’m saying is that discovering I am continuing my martial arts practice of twelve-plus
autistic has meant realizing that there may years in the face of all the progress I have made
be some behaviors or struggles that I need to improving my balance thus far.
reject in order to acknowledge that they can be
improved. This leaves only one explanation as far as
I’m concerned: my behavior will always be
Here’s why I think this: autistic, regardless of what it looks like (that is,
improvements or none). In other words, autism
(1) If I am autistic (because of my behaviors), is both a disability and a different ability, wherein
then I will always be autistic — as most some aspects can be impervious to change (say,
everyone agrees. sensitivity to bright lighting) while also being
accommodated, such as by dimming or changing
(2) And if my behavior is what makes me autistic, lightbulbs, and yet other aspects can be impervious
then in theory I could only be able to improve to change for some but not others (say, difficulty
(read: change) my behavior if I could become balancing) while still being accommodated if
un-autistic. necessary, such as, by providing hand rails).

But that’s clearly impossible, as established So I will continue biting my cheeks in pride.
above in point one, so I need to untangle this And I will continue improving my balance in
fallacy if I’m gonna make any sense out of it. pride, respecting where it is in time.
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 325 Mail or email. The next pen-pal number will be
given to your advert when it arrives.
My name is Louis. I live in a small town
in the county of Hertfordshire. I am 16 > Please note that this magazine does not print dating
years old and am at college studying an adverts, as it is unable to provide suitable support.
employability course. I was diagnosed with
high-functioning autism at the age of seven. > Those under the age of sixteen must have parental
My interests are politics (local and national), permission before placing a pen-pal advertisement
reading, writing fiction and non-fiction, in this magazine.
cooking, history, and fighting for the rights of
both children and young adults with autism
> If you get no replies, please don’t take this personally.
and other learning difficulties.
How to reply to pen pals
I would love to meet someone that shares
some of my interests. And to make a friend > Please remember to let us know the name and
I am happy to email, or write letters; I am number of the person whom your letter is for. (All
happy for anyone to get in contact with me, pen pals are numbered by the editor, not the person
age is irrelevant. Thank you for reading. Take who sends in the advert.)
care, Louis > Please remember to put your address on your letter.
> To contact a pen pal, please send your letter to
the Goth, c/o The National Autistic Society, 393
Pen pal number 326 City Road, London, EC1V 1NG, or email
[email protected]
Hi, I am Stefanie, 35-year-old woman. I was > We will pass your letter on to the person you wish
diagnosed just last year. I have other health to contact. However, we cannot guarantee the
conditions that limit my interaction with person will reply as that is entirely their decision.
outside world. I also have learning difficulties.
> Please note that all pen-pal letters sent via this
My interests are a small black dog called magazine are opened before being passed on.
Jet: he is a pug-cross-Jack-Russell. He’s not
mine but I love him so much. My other **Important notice —
­ please read**
interests are politics, history, sci-fi. I also
have a developing interest in photography This magazine is happy to publish pen-pal
which is quite new. advertisements but we must stress that we are not
a pen-pal or introduction organisation. We do not
I would like someone who is also like- match people up and we cannot monitor letters
minded or to debate with, either is fine. (other than the first letter, that is sent via us) so
please be cautious when releasing personal details
Many thanks in your letters. The National Autistic Society / the
Spectrum cannot intervene or be held responsible for
Stefanie any ensuing correspondence between letter-writers.
7
 more pen-pal adverts

Pen pal number 327 Thirty-one pen-pal adverts have been held over for
publication in the next six issues, Editor.
Hi guys, my name is Sera, I am 22 years
of age. I have an autistic-spectrum-disorder
diagnosis and I was diagnosed at the age of 19.
My disorder was first recognised at the age of Pen pal number 329
17 while I was doing my childcare NVQ and
had had difficulties at school. My autism is Hi, I am 43 and live in Scotland. I have autism,
mild-to-moderate but I am a high-functioning adhd and dyslexia. I love going to the gym,
individual. As a child I struggled socially and walking, running and cycling. I like watching
with communication but now I love socialising movies and wildlife and learning about animal
although it can sometimes be difficult as I and human behaviour. I believe no obstacle can
struggle with meeting new people. I’m friendly stop you from pursuing your dreams and goals no
and outgoing and very kind. My hobbies include matter what the circumstances.
running and I’ve joined a running club. Walking
has always been therapeutic to me when it Cubra
comes to worries. I’m a keen watercolour
painter and have sold some of my master
pieces. I love music and because I listen to
music frequently, I’m really good at recognising
different tracks and artists. I work with children Pen pal number 330
on the autistic spectrum and I absolutely love
it. I’ve been working with children from the Hi, my name is Hannah and I’m 35. I was only
age of 17. What I love about it is that I see their diagnosed this year so all of this is rather new for
struggles and I’m able to help as I understand me at the moment! I love receiving real letters so
what they go through. I’m looking to hear from I’m excited that this is a section of the website.
someone who is like me and can share interests My special interest is dinosaurs, but I’m interested
and certain things we find difficult. I would in all sorts of history in general. I watch a fair bit
also like to have tips on how people have dealt of TV and my favourite shows are West wing and
with situations like interviews as this is an area I Stargate SG-1. I very much enjoy reading, and I
find particularly difficult. Please get in contact. write fanfic. I have two original novels written as
Looking forward to hearing from you, well, though they’re not edited because ugh. I really
enjoy cross-stitch and colouring too. Looking to
Sera “meet” like-minded people who I can talk about all
sorts of things to. I’m liberal political and happy to
talk about current affairs too. Have a nice day!

Pen pal number 328

Hi, I’m Emma and I’m looking for a real Pen pal number 331
friend. Someone caring, kind, loyal and who
will never leave me behind. Someone who I Hi. My name is Ben.
can share laughs, tears and inside jokes with. I
know that I am all that. If you want to know I am 28 years old. I like traveling to different
what I like just ask me. I won’t bite. ; ) places. I enjoy doing martial arts and learning
different languages. I like video games and pro
Greetings, wrestling. I like listening to music also.

Ems I would like a pen pal.

8
 a book review and a notice

A kind of spark

by Elle McNicoll

published by Knights Of
ISBN: 978 1 91331 105 6
£6.99

review by Kayleigh

I loved this book. Yes, it is awareness and money for the never felt so well-represented.
aimed at children, but it is memorial. I read it in about an hour
the first time I have read a spread over a few days! I
good, genuine representation The bond Addie had with also think it is a really good
of Autism! This isn’t even her sister Keedie was beautiful length for this type of book
disclosed until you start and their ability to speak to somewhere around 200 pages
reading the book, nothing on each other in a way that no with a comfortably sized font.
the blurb or cover, so I am one else could understand.
sure many people will pick this Keedie guides Addie through This gets all of the stars, if
up having no idea and finally her struggles with Autism you ask me, unique, exciting,
learn something about it. Elle as Keedie has already gone and many doors opened
McNicoll is Autistic herself and through it. Keedie’s twin Nina for disability representation
says she wrote this during an isn’t like them, she doesn’t in books (that isn’t just for
incredibly angry time in her really understand them and comedy or to humanise
life; she is brutally honest and honestly I didn’t like her all someone else)! I want more
that is why I love her so much. that much at the start but when books like this, and I really
(Some of the best work comes an incident at Addie’s school hope that Autistic kids can
from the strongest emotions, means both sisters are called in pick this up and finally see
anger, sadness, love, joy!) (as Addie’s parents were both the representation that they
working) I began to see her in deserve! I think the author and
I fell in love with Addie a different light. Addie are incredibly inspiring,
in the first chapter, my heart so I know I will read this time
broke for her knowing the It was an amazingly easy and time again.
pain being bullied can cause. read (regardless that it is a
I was rooting for her and her children’s book) and quite That’s what my Autism is.
new friend Audrey to raise emotional for me as I have It’s like a kind of spark.

If sufficient material is sent in, the theme will be the theme. Writing on any subject is
for April will be coping day to day in 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

Hi, Editor, Dear Editor,

have your readers heard of “Zoom fatigue” I was diagnosed at 44. Before I knew I was
and thought, like me, “Join the club!”? autistic I struggled with anxiety, panic attacks
Neurotypicals seem to experience conference and depression, both at work and in everyday
calls just like me, an autistic person, when I life. I found working as a housekeeper on the
experience ordinary, everyday social interactions inpatient ward at a hospice challenging and I used
— that is, eyes staring out at me, no eye contact, to have panic attacks and daily anxiety, especially
no recognizable faces, random bits of bodies when I was around other people. Since being
coming in and out of focus, no cues from subtle diagnosed I understand myself better and now
body language — and therefore no rhythm to the realise that my panic attacks were actually due to
conversation. Autistic people feel as if they are sensory overload, which led to meltdowns. All
helplessly participating in a Zoom twenty-plus- of my senses were in overdrive from the amount
person conference call all the time — well, I do of people, movement, noise, bright lights and
anyway. Do other people agree? smells. Patterned clothes such as zig zags, stripes
or spots made me feel sick. With support of my
Stay safe, line manager and Access To Work I was able to
get a pair of coloured glasses. These are for visual
E Hill stress and help with bright lights, escalators, lifts,
travel sickness and patterns on floors or clothing.
They have made a huge difference to me as the
floor used to move when I looked down. Now it
Dear Editor, doesn’t, which is a big relief as it makes doing my
job and everyday life a lot easier.
in response to Zimin’s letter of the October
issue: as you know I too was expelled, excluded I take things literally. If you say it’s raining
from church. For many years my anxiety was cats and dogs I actually see cats and dogs falling
permanently sky high. from the sky in my mind. I see most things
people say in pictures. After all the noise, lights,
We need to get something done about people smells and social interaction of the day at work I
who are autistic being excluded from church. The have to go to sleep for an hour when I get home
place where we are supposed to be loved, cared to bring down my senses and calm my brain. The
for, forgiven. Not condemned for being us, for hospice has supported me with this by allowing
being what we see as normal. me to work a shorter day and start and finish
when the trains aren’t too busy. The hospice also
It would be interesting to get an overview of moved me from the inpatient ward to a quieter
which denominations are the worst offenders of part of the hospice which isn’t as overwhelming.
this. I can have a sensory break whenever I need one
and the spiritual care lead at the hospice has been
The church wouldn’t exclude someone in a particularly supportive.
wheelchair or who brought a guide dog. We too
come under the disability act. I’m extremely grateful to the hospice for all
the support and adjustments they have made to
The church must make reasonable adjustment. enable me to continue to work. Only 16% of
Mine has had to — everyone else must do too. Autistic people are in employment; being able to
work means alot to me and I see this as a huge
From achievement.

Sue Vickie
10
 an article

Twenty years of solitude

by Tom

When I was about eleven I regularly played obsessed with fitting in that I had no opportunity
outside with our neighbour’s kids, two and three to make contact with my emotions, which meant
years my junior. I’d caught up with my younger I couldn’t really feel connected to others (because
neighbours’ psychological development level only you do so at an emotional level) or feel safe with
then: I’d finally figured out what they were up to groups of people. So when people started moving
well enough for me to join in. I’ve always been away from the student home, the new occupants
socially awkward, but tried my best to understand kept their doors shut and the social life on my floor
the rules and apply them: trying to do consciously died down: I was fine with that. My relationship
what comes instinctively to other people. Because had ended, so I wasn’t feeling particularly
I was figuring out things after the fact, life always social anyway. I concentrated on finishing my
seemed to move too fast, just out of reach for studies. When I did, I moved away as well, to a
me. Throughout school and university, lasting “normal” rented apartment in a notoriously bad
friendships and social interactions were especially neighbourhood. No wonder I didn’t make any
hard to come by. Until, that is, some five years into contact there, then, was it? I occasionally tried
my university studies (it would take three more to do something social, but increasingly half-
years to finish, longer than officially sanctioned heartedly. Gradually, subconsciously, I gave up.
but not unusual) when I finally found a nice More and more I isolated myself, shunning social
student accommodation. Usually, finding a place settings altogether. Not because social settings
to live entailed presenting yourself to existing weren’t appealing, but because I felt I had to
residents along with dozens of other hopefuls. Of protect myself from the awful sensations of being
course, I never got picked so I put my name down completely overtaxed. Probably also because I
for an accommodation that was assigned through didn’t want to be confronted with my otherness (or
a simple waiting list. It was quite luxurious by as I’d have seen it then: deficiency) and solitude. It
student standards: you had a bathroom and never felt entirely right, like I was denying myself
kitchenette all to yourself, only needing to step large parts of life. However, it seemed apparent to
out to do laundry (and most people still had their me that I could not do “social”.
mums do that). Perhaps as a reaction to that,
the floor I ended up on was extremely social: Some ten years later I found myself with no
doors were open all the time and people gathered social life and a dead-end job with no prospects.
regularly. I tried to join in, buoyed by the fact Something had gone wrong and an answer
that I’d also landed a girlfriend. I never felt more was needed, which turned out to be Asperger’s
normal. Surely life wouldn’t run away again? syndrome. So I launched myself into therapies
to try and make my life better. And it did: I got
No. No more. Please — I just cannot be another job (well, series of jobs) with a temp
around people anymore. agency that specialises in autism, which is a
veritable heaven compared to my old job. I even
But of course it did. Try as I might, I could met someone on one of my assignments who
not shake the awkwardness and feelings of became a very good friend, soulmate even (her
being completely overwhelmed. I’ve always had words) and my mental health improved as well.
depressive episodes, but they became worse. Worst But still I shunned a lot of activities, especially
of all, I had no idea why this was happening, anything involving groups. I limited my social
apart from the obvious fact that I was, somehow, interactions to one or two people at a time — the
defective. Looking back, it’s obvious I was so only setting in which I occasionally didn’t feel
11
 an article (continued) and another article

awkward, and even then it was mostly at work. At But that’s not what happened. It is precisely
heart, I was still convinced that I had to limit my because I have spent ten years getting to know
social interactions. myself, learning to be milder towards myself,
learning to experience the grey instead of
This has gone on until recently, another seeing only black and white, that I was able to
ten years later, an odd thing happened: I found experience this. This wasn’t some cruel cosmic
myself at a series of social gatherings. What’s joke I’d essentially played on myself: this was,
more, they had nothing to do with work. The this is, progress. However, it is also tragic that
first two meetings went as I’d expect — awkward, I felt I had to deny myself so much of life for
overwhelming, unable to make contact (with so long — it’s no wonder that’s causing me
myself, and by extension, with others). This grief. I’ll have to come to terms with the fact
confirmed my suspicions that I couldn’t “do” that my vulnerabilities are here to stay and I’ll
social, or at least groups. But the third meeting was have to deal with them on their own terms. I
different: awkward, yes, overwhelming, yes, but I suppose by isolating myself, I tried to cut out so
found myself being able to make contact for the much of life that I wouldn’t have to face these
first time, even to feel some sense of safety. That, vulnerabilities. That’s not how it works, though,
somehow, unleashed a hurricane in my head — and going by my recent experience, that’s not
surely there was the proof that those twenty years how I want it to be either. I’ll have to (and will)
of solitude had been for nothing! Here I was, in a find help to deal with these vulnerabilities rather
group, feeling safe! If only I’d tried a little harder than run from them. I thought I’d gotten most
back then, that would have been there all along psychological breakthroughs out of the way by
and I wouldn’t have wasted twenty years. Surely now but maybe, at 45, I’ve opened up a whole
after all these years, it was too late to change. new chapter.

Why being self-employed is

a great career option for autistic people

by Virginia (weathering the storm of the pandemic at home)

In 2013, after sixteen years of secondary-school quality of my work. But my personal stress
teaching, twelve of them in a nice, well-behaved co-incided with a change of management, and
private school, I left to set up my own tuition for many neurodivergent people, any change
business. In my case, it was a fairly spontaneous has the potential to be seismic. Because of our
decision, precipitated by a lot of unrest in my communication styles, the way we are perceived
personal life which contributed to a spot of bother to react to situations can often be misinterpreted,
at work. It looked like I would have to jump and we are vulnerable to bullying. Looking back
ship before I was pushed, so I took the plunge at my entire working career, not just in teaching,
there and then. Whilst I was still working for but in every job I had worked in, any problems I
my employer, I took on three tutees after school, encountered in the workplace were directly related
and, three months later, I left work and grew very to colleagues or line managers, who just didn’t
quickly to a fully-fledged business with twenty-six understand me. There were occasions when I
clients. The risk had paid off, and I have never found a gem — the mad woman at the freight-
regretted this decision. forwarding company who calmly understood when
I sent a parcel to Australia instead of Amsterdam,
The problems I had encountered at work or the Sherlock-Holmes-style Head of English,
were not my fault, and nothing to do with the with the massive intellect and wicked sense of
12
 an article (continued)

humour, who thought parents’ evenings were just been hard hit. The government have begun to
not for him to bother with. Apart from these offer help to those they consider eligible, but we
memorable kindred spirits, I often considered have also had to do what we have always done
the people in charge of me to be frustratingly to an even greater extent: save money as a fall-
“jobsworth” and many seemed to be, well, a bit back and be versatile. Some fellow tutors and
stupid. Hours of pointless meetings and red other workers such as hairdressers have lost all
tape; report writing six times a year to say the their clients. I have not suffered too badly — I
same thing six times; worst of all, “workspeak” have lost six clients but gained six new ones from
— the jargon peculiar to the particular industry my waiting list. I lost the summer money when
you are in. In teaching, I began my career with the exams were cancelled, but I have saved back
the buzzword “differentiation” looming large enough to cover this. I was adaptable enough to
over every needless lesson plan, and ended it in move my business on line, and was able to “sell”
an institution obsessed by “growth mindset” this to loyal customers — you quickly learn how to
— which for various reasons I considered to be improve in your dealings with people. I was always
laughably ironic. versatile — I spread my skills from secondary,
teaching GCSE and A level, to the full range from
Since I became self-employed, I have extolled age 8 to adult, so when the exam students left, I
its virtues to anyone who is curious. Apart from had others who remained. I am lucky enough to
the lack of annoying colleagues, full control of have two incomes in the household too.
your product, and dispensing with pointless
meetings and paperwork, you have free range to But for all that, working for yourself is still
take on as much or as little work as you want, work a brilliant career option for autistic people.
from home, and tailor your hours to suit yourself. According to statistics, many autistic people are
There are tax advantages too. I don’t cheat the tax unemployed, and this is often due to bullying
man, but I do pay reasonable tax bills compared to at work or lack of support. So many of us have
my husband’s extortionate ones. It is important to specialised talents, and can offer a great service
have a good accountant as he or she will help you to others or contribute our skills in ways other
claim all the expenses you may not have considered than in the traditional workplace. Many autistic
you were entitled to. people feel validated through their work, and
even find work a way of de-stressing — in the
Until last month, I felt that being self-employed right environment. And if you have other hidden
was the future way forward for the world. disabilities, what better way to work than to fit it
However, during the current coronavirus crisis, I around your own time and in your own home.
have been forced to re-evaluate, and what I have
found is that I am incredibly fortunate to still be The best thing I have found is that my hobby
working in a job I love. of analysing and reading earns me a living. I
help others with my skills, and I even have time
There has always been a downside to self- to pursue other interests like music and writing
employment: no sick pay, no holiday pay — if — I became a published author last year. If I am
you don’t work you are not paid. In tutoring, this having a day with few “spoons” available, I can
means I have to mark exams in the summer as I re-schedule my work around this, although whilst
don’t work as much during those months. I also I am working on line, I only have to go downstairs
have to advertise (although I don’t spend much to be in the office, so I can also get away with
and, luckily, I was known enough to gain clients by working in my PJs! I would urge anyone who finds
word of mouth, which still continues). For those it a struggle to go to work, or maintain a job in
of us who enjoy socialising, being at home can the traditional sense, to take stock of their skills
be quite isolated, although not all self-employed and interests to see if they could utilise them by
jobs are like this. Recently though, covid-19 has turning them into a new career. After all, it might
impacted everyone, but the self-employed have just pay off!
13
 a book review

Aickman

(connects to canals reply from last issue)

review by Tony

Robert Fordyce Aickman new to Robert Aickman’s short is expected to die. The matron
wrote forty-eight stories which stories, this collection may of the hospital asks her to
were originally compiled into appeal and gives a good idea pick up clothes for her friend’s
eight volumes. This entry is a of his style. His stories leave hospital stay.
review of one of these volumes both the main protagonist and
(Dark entries, 1964, Tartarus reader perplexed as to where When she enters the
Press). Aickman edited the first the story has gone and what building, she finds all the
eight volumes of the Fontana really happened. MR James, rooms are locked and when
book of great ghost stories and, the British writer of ghost opened up, sparsely furnished.
with Elizabeth Jane Howard, stories, by contrast makes Eventually she ventures into
cowrote We are for the dark, a everything clear by the end, the library, used as a bedroom
collection of ghost stories. His even if the main character is by the father. It has bars
father was an architect and his perplexed by events or even on the window and when
grandfather, Richard Marsh, killed by them. As for HP she draws the curtains, she
wrote The beetle, a horror story Lovecraft, the American catches the fleeting sight of a
that at the time was almost writer, he spells it all out for figure — gaunt and deathly (a
as famous as Bram Stoker’s you after saying that it is all too recurring motif of the writer).
Dracula. He seems to have indescribable to put into words. A final revelation leaves the
had a strange childhood and whole situation open-ended,
found his father perplexing, which would have pleased John
according to his autobiography The school friend Carpenter, the director, as this
(The attempted rescue). This may is a style he was famous for in
explain his style of writing and The story that kick-starts the his films.
his dislike of childhood and volume is about a friendship
children because although he that develops between an
married, and had an affair with ordinary, middle class, girl and Ringing the changes
his co-writer, he never had any what we call a swot in the UK.
offspring. He was a member The father of the latter girl This is Aickman’s most famous
of the Ghost Club, and the seems to be a foreign academic, story, having been made
Society For Psychical Research, who inspires his daughter in into a BBC television film
investigating the famous Borley her scholarly pursuits, which is in 1968 and more recently a
Rectory haunting in Essex. He not unusual in public schools. radio play, adapted by Jeremy
was also a theatre critic and co- The mysterious father dies. Dyson (2000). It’s about
founded the Inland Waterways The daughter, now an adult, a honeymooning couple
Association, which rejuvenated returns to the family home arriving at an East Anglian
the British canals system. He after a distinguished academic seaside town in the middle
died in 1981 at the age of 66 career and the friendship of nowhere. On arrival they
after refusing conventional is renewed. So far nothing hear the church bells ringing
treatment for cancer, in favour that unusual, then the girl is and assume it is some kind of
of homeopathy. For anybody knocked down by a vehicle and practice session, but as they
14
 a book review (continued)

are to discover, it has a much window perplexes him as the traveller who misses his train
more sinister purpose than civilized world creeps in daily connection and is forced to
that. The hotel where they are upon his idealized landscape of spend the evening sleeping
staying is run-down and seedy, cliff and sea. Eventually that in the closed station’s waiting
the landlord nowhere to be is all he sees as the town draws room. He seems to wake in
seen and the wife seemingly him back to reality and his the night to find the long-
the worse for alcohol lover vanishes. In the mirror is disused stove alight and
consumption. The only other reflected an old and dispirited himself surrounded by fellow
guest, a permanent resident, man, like a visitor to fairyland, passengers. He is then woken
warns them to get away as who thought he was absent for up for real, this time by the
quickly as possible. Then the a short time but really it was day porter, who tells him the
bells stop and all hell is let years. other porter shouldn’t have
loose. let him stay there. This, he
says, is because the waiting
Bind your hair room is built over an old
Choice of weapons prison graveyard and has an
This is one of his stories that unfortunate reputation. He
Aickman’s stories speak of a baffles by its unrevealed actions also tells him that he should
world gone by, slightly seedy and half-exposed players. Once see his doctor when he gets
and decrepit and Choice of again, as in two of his other home as he has acquired the
weapons is no exception to this stories in this collection, there same nervous tick that the
run-down feeling of post-war is a male character that looms night porter has.
Britain. A mysterious woman menacingly, almost inhumanly.
at a restaurant, a frantic pursuit A woman visits the home of
and a malevolent stranger, an office colleague, to whom Don’t be a stranger
followed by a sword fight, a she is engaged, meeting some
theft and a vampire’s kiss. All locals in a get-together — Aickman always referred to
this, set against a backdrop including an eccentric woman his writings, not as ghost or
of Egyptian architecture and who lives in a graveyard. The horror tales, but strange stories,
failed romance, rounds off the following day she goes for a and this collection displays
story. walk in the woods, running this quality in a fresh, sharp
into a herd of pigs and two manner. Other books in this
strange children, plus a silent series are published by Faber
The view and menacing herdsman, near and Faber and include The wine-
a maze. That night she returns, dark sea, The unsettled dust and
In this story the main witnessing a strange and Cold hand in mine. His original
protagonist, a government baffling procession of either publisher for these items was
official in the Foreign Office, naked people or fur-covered Tartarus Press.
takes a trip on a boat out of ones. If it were a stone circle,
Liverpool. Travelling to some instead of a maze, you would Anybody interested
undisclosed island, he meets think it was some pagan ritual in finding out more
and falls in love with another but in this instance, you are not about Aickman may find
passenger, who invites him sure. information at the British
to her house. During the day Library, which has a section
he paints and she goes off dedicated to his manuscripts
riding. Strange carpeting, the The waiting room and other papers. Bowling
appearance of a monstrous Green State University
figure, and the ever-changing This is the shortest of in Ohio, USA, also has a
view from his bedroom the stories. It is about a collection of his papers.
15
 a notice, a piece of art, and paired poems

The Autistic Adult Choir Notes from my diagnosis

notice by Jill, the Choirmaster

I am deficits,
The Autistic Adult Choir is looking for singers. disorders,
If you are an Autistic adult or young person, and abnormalities.
you are welcome to join one of our Zoom Difficulties,
sessions and find out if the choir is for you. restrictions,
and limitations.
If you enjoy singing, or think that you Inabilities,
might enjoy singing, please consider joining sensitivities,
us. You will be singing in a non-judgmental,
supportive environment. vulnerable.

Zoom sessions are currently being held due I am kind and considerate,
to covid-19. We meet Tuesdays and Thursdays but cold.
between 7pm-8pm. Accomplished in everything I attempt,
but intolerant of imperfection.
If interested, please email or call: I am fearless and confident,
but anxious.
Email: [email protected]
Choir’s mobile: 07495 725 984 My responses are disproportionate,
(I am always too little
Please see our website for more information:
or too much.)
https://www.theautisticadultchoir.com My speech is clear and easy to understand,
but too quiet.
I’ll smile when you make a joke,
(if I realise it’s a joke at all)
but not just because you smile at me.

I have no interest in casual friendships,

but am easily led and manipulated.
I’m clever,
but have no common sense.
I eschew conventional gestures,
I am atypical,
unusual.

I’m blunt,
(I tell the truth,
funny how that’s seen as a problem.)
Conversation does not come naturally,
I’ll panic if you don’t follow my script.
I cannot empathise spontaneously,
(what does that even mean?)
But I will try and fix things,
by anon And if you ask, give you a hug.
16
 paired poems (continued)

I am reduced to a list, Conversation is hard,

A diagnosis, small talk is painful.
a disability. But tell me your passions.
I’ll listen.
The myriad parts of me I am my own calm
dissected, in the storm of the world.
and judged. Where everything hits me at once.
I can retreat into silence,
The labels are all people see. and a perfect focus,
The acronyms I strive for perfection
stamped on my soul. because I know that I’m capable.
I can manage anxiety,
Incapable of love. and sensory overload,
Or of empathy. triggered at the drop of a hat.
I throw myself into interests
A robot. with childlike enthusiasm,
because life is a game, after all.

I see beauty in details,

in patterns and colour,
in the order of numbers and science.
In the sound of a word,
as it repeats on my tongue,
making peace in the middle of chaos.

Notes from my life I am more than a list,

I’m a constellation of stars.
My darkness is spangled with light.

I can’t write a poem

I am intensity, about all that I am,
curiosity, I can’t be constrained
and creativity. into lines.
Ambition,
acceptance, If I’m a robot,
and logic. I’m Data with his emotions chip on.
Talented, Everything intense and overwhelming.
resilient, But there’s persistence in confusion,
strength in despair.
strong. And I’m only cold if you don’t care enough
to really look at what’s there.
I will drive across the country,
if someone I love says they need me.
My friendships are few,
but precious.
I’ll trust what you tell me,
until you’re caught in a lie,
better that,
than to live in suspicion. paired poems by harri
17
 a poem with accompanying letter

To the Spectrum, I am happy to be credited and named

as Matthew Lacey, and it would be hugely
my name is Matty Lacey and I’m an Autistic appreciated if you could include the link to my
spoken-word artist, performer and philosophy spoken-word blog page at
student at Newcastle University, living and
proudly coming from, the North East. https://truthstunestoon.wordpress.com/blog/

I’m a huge fan of the Spectrum, and all of the Matthew Lacey
amazing pieces that feature in every edition, and
it would be an absolute honour, and subjective Best regards, and love and strength going forward
privilege, to be published in an edition. at this surreal yet enlightening time!

Perplexed

Now political factions seem perplexed when Are you all in one and more when you
you get your thoughts off your chest, when an question a classist, racist nation that uses
individual opens up about personal issues and repentance to control and manipulate your
stress. sentence?

They say there is no contest, and that Now is the time for emancipation, to break
comrades should never rest, yet when you speak away from the chains you were born in and raised
from the heart people want to put you under a with, faith is needed, but even more so is a break
test, a test of the mind, a test of the supposed away from inflation, be fragrant and blatant, no
divine, all I wanted to do was speak up for the surrender to an individual ego that exists just for
boys that can’t rhyme, now is the time, to stop all a Facebook generation.
the bitching and lies, open your mind to a world
where people are not just victims for likes.

Prophecise that this is all of your times if no

one speaks up for hearts and minds, we might as
well all wear a disguise, cover up what’s behind
the eyes, all the performance of suffering and
struggle leaves people blind to the times, the hard
questions and reflection, kids growing up cannot
fathom a pension, so used to being in detention,
for not following the sentence, the sentence of
some educators just a twisted form of oppression.

This is not just a lesson, a freedom of

expression from the mind coming up who
has been preached at, grieved at, because of
depression, this is why I have started this session,
as I fight for my independence and that of the
lives of the people who need divine intervention,
now here is the question, are you a man, beast or
a weapon?
18
 stuff you might like to know about the Spectrum

The rules of the Spectrum

(contact information for the Spectrum is on page 2 and

again on page 20)

1) The Spectrum is funded by the NAS and 9) If you phone and leave a message on the
readers’ subscriptions, and is independent of machine, please speak slowly and clearly and
the NAS. Although it was called “Asperger spell uncommon words, as the line isn’t very
United” it aims to be for the whole of the clear. Please give any phone number you leave
(reading) autism spectrum. That is, the twice for the same reason. Remember to give
concerns and joys of any autistic subscriber your postal address so that we can find your
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2) The Spectrum is quarterly, published in 10) You can sign up for an email notifying you
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13) Book reviews are the most popular thing
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All submissions may be edited, especially
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to subscribe to the Spectrum. available.

19
The Spectrum
magazine

Outdoor living project

New Year into Spring

notice by Ruth

Memory Gardens invites: the sounds around us in this special place beside
the River Lea — a hidden gem in London,
children and young adults on the Autistic Hackney.
spectrum
You will be joined and supported by an
to book a Sculpture, Art and Sensory Session Artist/Tutor. Parents and allies are encouraged
to attend and join in too.
in London, Hackney, at: Robin Hood
Gardens, Spring Lane, E5. Cost: £3

Sessions will run every Friday between 10 am Let’s make something together!
and 3.30 pm.
Call Ruth on: 07940 890 418
You will need to book a one-hour session in
advance so that we can maintain small covid-safe Email: [email protected]
groups.
Website:
We’ll make balance sculptures, use leaves,
decorate and enter shelters, make fires, listen to www.handandskyproject.yolasite.com

The Spectrum, c/o NAS, 393 City Road, London EC1V 1NG
Telephone: 0808 800 1050 (free from most landlines) or
Telephone: 020 7923 5779 (geographical charges apply)
Email: [email protected]
Website: www.autism.org.uk/thespectrum

Except where stated, all material © National Autistic Society 2021