Spectrum

Produced by and for autistic people

The

Edition 98 April 2019

 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

add you to the email notification list.
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
large print, please let us know using the email address or postal address above.

Contributions for the next issue should reach the Spectrum by 13 May 2019
2
 editorial

Welcome to the April edition of the magazine in other online media, which currently
Spectrum. mostly means Facebook and Twitter. We can look
forward to a day when, rather than receiving an
I hope that you like the completed new look e-mail alert that the latest edition is now available,
of this magazine. By “new look” I mean not just we can receive the alert of our choice: e-mail,
the design and brand, but also the web version Facebook, Twitter or whatever comes along in the
and the online archive, which is now as complete future.
as possible.
I know a lot of you have no interest in this,
Naturally, since the beginning of the year, and want dependable paper, so if that’s you, please
anything appearing in the magazine is also on don’t be upset by such developments — paper
line — one day we hope to link all the articles on continues, and book sales have not slumped as
a subject to one another, though this is a very big was once predicted.
project. Then there will be no need to search for
them laboriously! That’s the reason why I had to Yours,
change the rules (on page 19) to allow the NAS
to use any contributions which appear in the the Editor

the pets edition — suggestion for next issue on page 9

Contents

Art by Andrew . . . . . . . . . . . . . . . . . . . . . . .cover Disappearing into an autistic mind . . . . . . . . . . . . .11

story by Eizzah
Winston . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
feature by Willow Pets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12-13
article by Tony
Letter about cat life . . . . . . . . . . . . . . . . . . . . . . 5
feature from Vanessa My journey in getting an autism diagnosis . . .. . . 14-15
article by Katrine
Letter about horses from Nick and . . . . . . . . . 6
one in response to Bruce from Ita Letter about growing up . . . . . . . . . . . . . . . . . 15
from Dan
Pen pals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7-8
Fear and anxiety . . . . . . . . . . . . . . . . . . . . . . . 16-17
Letter in response to Ji from Tony and . . . . . . 9 article by David
one about autism from Otis
Pets – article by Anne-Laure . . . . . . . . . . . . . . 18
Letters to the Editor . . . . . . . . . . . . . . . . . . . . 10
one about special interests from Patrick, The rules of the Spectrum . . . . . . . . . . . . . . . . . 19
one about cycling from Nick,
one about bullying from Selina, and Autscape 2019 – an autistic conference. . back cover
one about last issue from Helen notice by the organisers
3
 double feature — an article

Winston

by Willow

My dog is called Winston. He’s a french bulldog. that no matter how bad I feel, when I hear that
I painted this picture of him. He’s two. I have I cannot fail but to laugh out loud every single
Asperger’s. (I will always keep the name by the time! If you heard it I know you would laugh too!
way.) He’s my emotional support. When I am
having a hard time, stroking him and cuddling How wonderful he is without knowing it.
him is medicine for my soul. I talk to him all Well maybe he knows, he’s totally spoiled!
the time. He’s my best friend. He gets me out
of the house for walks when, despite being a And every time I come home, I am feeling
very outdoorsy person . . . during meltdown, the much better and I’ve had fresh air and exercise,
thought of stepping outside can be just too much. connected with nature, and had fun with “man’s
best friend” — well it’s just the medicine for the
Especially when sudden change happens and intense pressure and stress of an Aspie meltdown.
I’ve fallen down what I call the rabbit hole of Thank you, dear Winston, I love you.
utter confusion (this means
I feel like I’m falling and
there’s no bottom, I feel
that out of control) I grab
the lead and his favourite
ball, wrap up warm and off
we go, and once I’m out
there, my mind becomes
more relaxed, I get back
into the present moment,
emotions aren’t taking
over any longer . . . clarity
creeps in pretty fast as
I take in the wonderful
sights of the Mother
Nature all around me.

I love having fun with

him, no matter how bad
I feel, playing ball with
him, exploring the woods,
watching him sniff every
lamppost with equal
enthusiasm and listening to
the way he snuffles with his
nose touching the ground,
sounding almost pig-like,
suddenly everything isn’t
so bad and I laugh a lot —
it’s because he is so funny
4
 double feature — a letter

Dear Spectrum, of physical problems and the mental problems

that automatically come with them. I needed a
as I am a real-life Crazy Cat Lady, I thought I good form of therapy and cats was it — just ask
should send you a few of my thoughts about pets. my doctor. Thirdly, my husband and I apparently
Specifically cats! I would like to talk about the have poor resistance to feline wiles and in this
enormously positive effect they have had on my case resistance was indeed utterly futile — they
and my husband’s lives. He too is a proud Crazy had us at the first twitch of their whiskers. In
Cat Man. my opinion, however, we must have rather good
resistance because there were 30+ cats and kittens
We “acquired” our furry pack of ten cats in one shelter that we went to, but we didn’t come
(officially known as a clowder or a glaring) before home with all of them did we? No, you see?
either of us realised we were autistic. Having that Plenty of willpower really.
many cats and being “crazy” about them should
probably have alerted us to the fact that we were I was only diagnosed as an Aspie in 2016
a little bit different. Maybe it did to other people, (just over two years ago) at the age of 46, and my
who knows, but I do know that for us it should husband in 2017. It was at this point that living
have been in the diagnostic criteria! with so many cats finally made sense to us both.
We both find life difficult in so many ways. We
We did start with two children. They grew up find people difficult. We found raising our children
and eventually moved out. At this point the cats extraordinarily difficult. Cats are non-judgmental.
moved in — one by one and two by two. Some They don’t ask for much. They absolutely ooze
rescued, and some “posh” pedigrees. We didn’t calmness, peace, tranquility, acceptance and
exactly plan to have ten fur babies but somehow understanding. They don’t answer back. They
each of them purred their way into home and our don’t take more than they need. They are always
hearts. Each time the gang went up in number, the there for us and they entertain us each and every
surprised looks and comments from friends and day with their wonderfully varied personalities.
family increased and the more difficult it became Who wouldn’t aspire to all those traits?
to justify our reasoning. We couldn’t justify it to
ourselves! All we knew was that we had struck Our motto is definitely to “be more cat”.
gold and had become addicted to their fluffy Our interest has also extended to big cats and
little faces, naughty personalities and, above all, whenever we can we support them too. We love
unconditional love. We stopped at nine but in fact all animals as well, and we could definitely see a
nine was an odd number and it was inevitable then place for a dog in our hearts and home too, were
that this fact would be used as an excuse when it not for the current residents having other ideas.
kitty number ten appeared and needed a home. But we do feel more attuned to cats over dogs,
as dogs tend to be a little more needy and lively
Why so many? people ask. How do you cope than cats. Being Aspie in a neurotypical world is
with all the work and cleaning up after them? very stressful, very tiring and very difficult. We
How can you afford them? Do you know all their need ten cats. We adore them, worship them and
names? (Yes, that really was a top question.) would do anything for them. In return we receive
so, so much. They have also taught us much.
Well these fluffy little souls ask for very And they, in return for their therapy services,
little in terms of care and cost compared to the receive oodles of love and attention, safety,
amount of joy, peace, relaxation and oxytocin pristine toilet facilities, plenty of playtime and
release that they bring. Firstly, I needed a new toys, good food, fresh water, cleaning services,
special interest (I did need another one, honest!) excellent medical care and cosy places for all
and cats fitted that bill very nicely. Just had to personalities to sleep and hang out.
buy a few more shelf units to store all those cat
books and magazines on. Secondly, I have a lot Vanessa
5
 two letters

Dear Goth, Thank you, Bruce, for enlightening

me about high-functioning Asperger’s.
thank you for the latest copy of the Spectrum, which was I recently met a man who is a high-
fascinating. I would like to contribute an article for the functioning Asperger’s person. I didn’t
next edition. suspect “anything wrong” when I met
him first but I started noticing little
I have worked for many years looking after horses, as things which would cause a bit of
I lived on a small farm and so took on the task while my annoyance to him: like if I met someone
family were on holiday or at work. I find horses are very in the street I got the impression
intelligent, and are chatterboxes, which may surprise people that he was a bit frightened of being
given as they cannot speak but they use body language to introduced, reluctant to come for coffee,
communicate with each other. For example, if they pull etc. Alone he is great fun, and likes to
their ears right back, that means you are in trouble so back make double-meaning jokes.
off! If they are facing forward, then they are fully focused
on you and looking to see if you are a leader or can be led. Now for the serious business! We
If you can be led, then they will try and lead you by making have become lovers (he is 75 and I
you do what they want which is give food. They can be so am 73) so no worries about taking
fun and you can see their personality emerge the more you advantage! We have both been married
bond with them. Syd was quite laid back whereas Mulligan before so know the ropes! I am
was a clever horse and picked up training faster, but did wondering if people with Asperger’s
tend to bully Syd, which was not nice but is herd behaviour. have any obsessive (dis)attractions which
I also took on another five horses for a neighbour and might cause dependence on me as the
these were fun as one was a stallion, one mare and a filly, new partner, in my case my new partner
as well as a gelding. The stallion was called Donkey as is partly sighted but is independent and
he looked just like one with his grey colouring. He could was a pilot in his working life, now
be quite a handful at times and I often had to leap over retired of course! Another thing I have
the stable wall to escape his temper but all good fun. The noticed is that he never asks if I am in
mare was known as Silly due to her nature but I loved her good form: I am a healthy woman, but I
as she was so wonderful to be with, as she loved a fuss and recently fell down the stairs and cracked
used to groom me using her teeth to rub along my back a rib. He didn’t once ask if I was getting
— this wrecked more jackets than I can count! Dylan was better or anything about why I fell. Is
the gelding and was so laid-back it was a wonder he could this normal for Norfolk? (NFN pun!) I
stand up. He was always on the hunt for extra food. I have become quite attached to him but
found horses so much better to understand, once I learned feel reluctant to undertake becoming
to read them, compared with people, as they are so loyal to a life-time carer to someone with this
you and I had total trust in them. syndrome, partly because I don’t think
I have ever met anyone like him before,
I also love cats and am sad that I am not allowed to keep and am therefore in a bit of a quandary.
one in my current home, although this did not stop me from One other thing, he seems to get upset
letting one in to dry off last week. I came home from the in restaurants if everything isn’t hunky-
library and heard a cat calling, so called it and it followed me dory. Usually it’s about the way the table
into my kitchen. He was a bundle of joy and I soon dried is laid or something that to me seems
him off with a towel which made him purr non-stop. The trivial! Apart from that, in the shower
rest of my house became a playground and I loved making he seems to want to scrub himself until
a fuss of him, but sadly I had to let him back out due to the his skin is red! He showers every day,
no-cat rule, but I hope to see him again should he wish to so isn’t filthy! Are these the types of
dry off. Animals can give so much pleasure! obsessions affecting Asperger’s people?

Nick Ita
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 278 Mail or email. The next pen-pal number will be
given to your advert when it arrives.
Hello. My name is Emma. I am 34. I live
in my flat with some support. I was diagnosed > Please note that this magazine does not print dating
with high-functional autism only in 2015! It adverts, as it is unable to provide suitable support.
has taken many years to get a diagnosis.
> Those under the age of sixteen must have parental
I enjoy looking after animals; at the permission before placing a pen-pal advertisement
moment I have a cat called Leo — he’s now in this magazine.
one year old. He keeps me busy. I enjoy
spending time with my family and friends.
> If you get no replies, please don’t take this personally.
I enjoy going to church, arts and crafts
especially jewellery-making, crochet, glass- How to reply to pen pals
painting and card-making. Going to see
concerts and musicals. I like to write stories > Please remember to let us know the name and
and poems and I also like watching some number of the person whom your letter is for. (All
soaps especially Coronation Street. pen pals are numbered by the editor, not the person
who sends in the advert.)
It would be good to hear from you if you
have similar interest.
> 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
City Road, London, EC1V 1NG, or email
Pen pal number 279 [email protected]

Hello, I’m Sian. I’m 29 (although I turn 30 > We will pass your letter on to the person you wish
in just a few weeks — eek!). I live in Cardiff. to contact. However, we cannot guarantee the
I was diagnosed with Asperger’s a couple person will reply as that is entirely their decision.
of years ago and am interested in getting to > Please note that all pen-pal letters sent via this
know other autistic people. magazine are opened before being passed on.

My main interest is autism. I love reading,

researching and writing around it, but I also **Important notice — please read**
like to read other topics. Other things I enjoy
This magazine is happy to publish pen-pal
include keeping fit, spending time in nature,
advertisements but we must stress that we are not
travelling, and watching films and YouTube
a pen-pal or introduction organisation. We do not
videos. I’m a big music fan, mainly acoustic
match people up and we cannot monitor letters
singer songwriters, chill, indie, country, but I
(other than the first letter, that is sent via us) so
happily listen to most genres.
please be cautious when releasing personal details
in your letters. The National Autistic Society / the
If you are a similar age and share some
Spectrum cannot intervene or be held responsible for
of my interests, then please get in touch! I
any ensuing correspondence between letter-writers.
look forward to hearing from you :)
7
 more pen-pal adverts

Pen pal number 280 Pen pal number 281 Pen pal number 284

Hello. My name is Michael, Hello, my name is Rafe. Hi. My name is Matthew and
I am 49 and I have Autism. I am 38 years old. I have Autism
I would love to hear from I’m 18, live in Leicestershire, and according to my diagnosis
anyone, especially America or and was diagnosed at 13 with sheet, not a little bit, a lot.
New Zealand, who is looking high-functioning ASD.
for a pen pal. I am educated to post-
I’m very much into anime of graduate-diploma level. I work in
My hobbies are listening all kinds, as well as the songs a supermarket, but live at home
to music, especially heavy associated with them. with my parents.
metal, flying remote-control
planes, fishing, watching TV I’ve also enjoyed some My interests are varied. I
and London Irish rugby. Nintendo games since I was am: learning the guitar and
young, mostly Mario- or violin (self-teaching). Though
I have seen Slipknot in Pokémon-related ones. I’m much further on with the
concert and have been to guitar than violin. Magic. Yes, I
Download festival. I visited I’d like to talk to anyone am a magician, who thought of
America to see the Tennessee about these things, especially performing to an audience at a
Titans play and I loved the those around my age. try-out gig at the Magic Circle.
food there, especially the Looking forward to hearing This was pre-diagnosis and I
spare ribs! from you. haven’t performed in public since.
I just perform for my nephews,
who love it. Other interests
include theology, and I am trying
Pen pal number 282 to write a book about a character
with Autism.
I like traditional poetry,
But dislike modernistic poetry Would like to hear from
I’ve written traditional poetry and three short stories people via letter or email. I have
Would prefer ages 55 to 65 or a bit for pen pal problems maintaining friendships
I am knowledgeable about natural history though.
I identify with Chris Packham in type
I also like gardening, walking, and music.
My name is John
Pen pal number 285

Hello, my name is Lucy and

Pen pal number 283 I’m 16 years old. My interests are:
art, sketching, drawing, anime,
My name is Savannah. I would like to pen pal with someone kpop, animals, Nintendo, gaming
that likes my interests. Disney movies, DreamWorks animation, and astrology.
anime, manga, musicals, scary movies, thrillers, comedies,
cartoons, animals, TV shows, Inuyasha, Ranma 1/2, Sailor Moon, Signing up to this in hope of
Naruto, Aggretsuko, Riverdale, The chilling adventures of Sabrina, True making a friend who would listen
blood, Once upon a time. I like trying different foods and I like to to each other’s problems and
learn about other countries. I would like to travel to different struggles, or really just making a
countries. So if you’re interested to be my pen pal send me an friend in general that I can talk
email. Thanks. and relate with :)
8
 two letters and a notice

To Ji Autism to me is something authentic and

original.
Yes, we are sensitive souls. This is true,
whether it is physically or emotionally, and also In the sense that, of course Autism varies
explains why we are smarter than the average from person to person.
bear, Bobo. In other words our intellect is as
sensitive and aware as the other parts of us. It is a crazy world out there.
People who are mentally unaware are not going
to be emotionally or physically sensitive, are It is hard to know who’s on your side most of
they? You cannot expect anyone to have only the time.
one or two of these faculties at a heightened level
but not the rest can you? It doesn’t make sense. Who can you trust?
True, communication may be difficult but then
the insensitive tend to drown out the sensitive Is there anyone out there that understands?
with their noise, aggression and general lack of
awareness of others, other life forms, don’t they?

Tony Who is there through the highs and lows?

Who truly cares or accepts you for you?

There are so many questions, but the answers

don’t always come so easily.
Dear Editor,
I agree, everybody needs someone to some
I am writing this letter in reference to the degree.
subject “What does Autism mean to you?”
Someone perhaps who can enjoy life’s
Being diagnosed eight years ago. pleasures.

It has made me realise a few things.

Things I wouldn’t have usually picked up on There is so much going on.

or pay any notice.
But, the questions I have are:

Do autistic people have a voice in issues raised?

If sufficient material is sent in, the theme
for July will be special interests or repetitive What makes autistic people thrive and show
behaviour and other stimming. Vote with off their potential?
your contributions: the more submissions on
a subject sent in (from different people) the Is it the case that you are autistic (you are
more likely that that subject will be the theme. automatically at a disadvantage)?
Writing on any subject is still welcome (though
I expect interests and stimming will produce
lots of emails and letters) as are ideas for new
themes, and artwork. Remember, if you want to Have a good evening,
see different content in the Spectrum, the best way
to change it is to send something in! Otis
9
 letters to the Editor

Dear Goth, Dear Editor,

for many years, research has focused upon I have worked in four paid jobs. And in all of
treating children and adolescents with autism- my paid jobs I got bullied. It is a long story why I
spectrum conditions with repetitive behaviours got bullied in all my paid jobs but it wasn’t nice at
or special interests. These behaviours were all. Some people don’t know how to treat people
viewed as detrimental, reducing opportunities with disabilities. I have had three voluntary jobs
for socialising and learning. However, recent and luckily in all of my voluntary jobs I didn’t
studies indicate that repetitive interests may get bullied and the staff treated me well in all
increase explorative learning skills, as well of my voluntary jobs. So there are nice and
as being pleasurable and managng negative understanding people in the world. I am sorry to
emotions. Given the debate, I would like to all of you readers who are getting bullied in paid
suggest the topic of “special interests” for a or voluntary jobs.
forthcoming edition of the Spectrum. Reflections
about how special interests (for example, a love of From,
football statistics, Marvel comics) have influenced
a person’s life would be a very interesting read. It Selina
may also help inform researchers and clinicians as
to the merits of trying to intervene in this area. I worry about printing pieces about bullying (or other
suffering) as I know it causes many of us distress to read
Regards about it. But it also lets us know that we are not alone or
unusual, that others are going through similar experiences
Patrick and will understand if we talk about how we feel, Editor.

Dear Goth, Thanks to the Goth and everyone who made

the January issue such an interesting and heartfelt
I wonder if there may be space in the Spectrum issue. I’m sure previous issues were great too but
to invite people to try cycling? I am a keen club I’ve only just got over the change from paper to
cyclist and cycle around the moors six days a online, and have also only recently got around to
week. Recently, though, I had to take a break trying to join in with the autistic community.
from my club as some unkind comments were
made about me that upset me. I have gone In response to Max regarding a new therapy
back and had a great day, but my thoughts are for people with autism, this sounds like a dream
on encouraging people on the spectrum to go come true, and could actually help people reach
cycling as I feel that there is little provision and their full potential, rather than simply help them
understanding if you are autistic. I am looking to move from unemployed to employed.
lead a short ride next week for my local support
group. I am due to be interviewed by Cycling weekly I also like Peter Myers’ cover picture very
to raise the issue of autism and challenges we much. And thanks to Anne-Laure for her
face. I am amazed I can even ride a bike as I have encouragement in speaking up.
poor co-ordination. I do find that being on a bike
helps me cope with this crazy world we live in Further note to the Goth: my email address
and I would like to encourage others to try it and can be passed on to any of the above people to be
enjoy being out and about and the all important put on their mailing lists or whatever. However I
cafe stop! I hope this may be of interest to you will understand if this sort of thing is beyond the
but I do understand about space constraints. scope of your role,

Nick Helen
10
 a story

Disappearing into an autistic mind

by Eizzah

When I, Zach, disappeared in my best friend’s mind, By the gate stood a boy, he looked like he was
it was such a strange experience. I am guessing you only 12 years old, and had short dark hair. Next,
are all wondering how it had happened. a blue Astra pulled up. Out of it came a much
younger-looking Chloe, and her older brother.
Well, it all started when my best friend, Chloe, As Chloe stood by the gate with her brother,
came round one Tuesday afternoon. We were the boy would make faces at her and mimic her
raving like lunatics to some dance music I had autistic symptoms. It was a long wait before the
put on in the living room. Chloe was carrying her headmaster arrived, cycling along on his bike.
blue notepad with her, in which she liked to write
stories. I noticed that she would scribble down The scene changed again, and Chloe was sat
an idea every so often, usually in between dances, in assembly, in the school hall. There were rows
when we were having a break. of chairs, and one side was for boys, while the
other was for girls. Chloe would place her chair
When my mum invited a friend over for a cup slightly away from the other girls, while they were
of tea, Chloe would sit down and draw portraits sat together. Whenever she tried to sit near them,
of them. They were so engaged in general social they would laugh and move their chairs away.
chit-chat, that they didn’t even notice. Chloe
often expressed clearly to me about how often As they were singing hymns, the bullies
she wished she too could talk like a neurotypical. would make fun of Chloe’s voice. When they
She found their language hard to understand. had finished singing, the bullies would pile the
Chloe would describe it as being like travelling to hymnbooks onto Chloe’s chair, without her
China, where you wouldn’t understand Chinese. noticing. This was because they knew Chloe
would sit on them, and make a fool of herself.
Chloe was often confused and anxious. A
part of me wished I could take this pain away Mrs Brown was showing Chloe’s artwork to
from her, and trade places. She would assure me the assembly. It was a collage, containing photos
that everything was fine, that autism was a gift, of friends, that she had made outside the school.
and that it was a blessing to be autistic. However,
I often doubted that she was telling me the truth. “I didn’t think you had any friends, Chloe,”
said a bully that was sitting in front of her.
“Zach,” Chloe said to me after we had
finished dancing, “do you really want to know The bully was a girl from the class below. She
truthfully about how I feel?” often sat in Chloe’s classroom during break, as
she was friends with some of Chloe’s classmates.
I turned towards her. “Yes,” I said. The bully once said that she liked everyone.
Chloe had hoped that she liked her too, but her
“Hold this notepad.” heart soon sank when the bully went on to say,
“Except for some people, of course.”
As I held the notepad, I began to spin around
and around. The scenery started to change, and I To be continued . . ..
saw that I was at the gates of this school. I looked
upwards at the sign on the gate. “St Mary’s,” it Author’s note: this story is based on a real
read. personal experience.
11
 an article

Pets

by Tony

When I look into my dog’s twilight years. She instantly to move her position. She
eyes, I see simplicity, honesty, recognised me as a fellow was like a typewriter carriage.
perfection and love. Sadly, I traveller through life and we Every time you turned over
cannot see that in adult human got on well from that instant. in bed, she lumped up against
eyes, but the glimmer exists If we hadn’t got on well, as your body in the new place,
in children’s, before adults my wife pointed out, that until eventually you found
knock it out of them and would have been me out the yourself on the edge or with
they become the conniving, door, not the dog. When she the duvet totally off you. If
dishonest, frightened beings eventually passed away, we you tried to move her, she
we recognise as neurotypical were both by her side. She growled in displeasure. My
human beings. looked from left to right, tactic was always to get out
making sure we were both of bed and move to the other
We only have one dog left situated near her and died side, but not Margaret’s.
now — Jack the lad, Jack in shortly after midnight.
the box, Jack of hearts. He Ludi died of a
is growing older and more We had looked after a haemorrhage when we lived in
arthritic with time. He is also friend’s dog, when she went Thurso. She had run like the
imitating our last old dog, off on courses, at a period wind, chasing deer and rabbits.
Midge, which fought its way after this. Eventually she said If we ever lost her, she never
back from a stroke to full that we might as well keep lost us. She would calmly turn
health (lopsided head, with Ludi as she was with us more up at our house, while we were
left bias, to fully upright again) than her anyway. Shortly after out, frantically searching for
before succumbing to the this we also acquired Holly, her in the last place she was
inability to gain sustenance although our original intention seen. She ate dead rabbits that
from any food, through was to get only one new dog. were so mouldy she would end
suffering perpetual diarrhoea. up bringing them back up,
We got Holly from a friend ears and feet mostly. Finally
Holly, the old Labrador of my wife. We picked her she became so arthritic that
we had before her, was full because she picked us, coming she struggled to walk, let alone
of joy, but they didn’t get on. straight up to me when we run.
One night, shortly after we viewed the batch of puppies.
obtained Midge, she panicked, On the way home, she started Holly became ill when we
bumped into Holly and bit off on my lap, venturing up moved to our present location.
off part of her ear. After to my shoulders then onto the Years of injuries, and general
this incident Holly was badly parcel shelf at the back of the wear and tear, dragged her
shaken and within a short car. The first few nights she down. During her youth, she
period of time developed slept on my head like a wig or had run across the road and
diabetes. under the covers with her rear a furniture lorry had hit her,
end sticking out. dislocating one of her back
Me and my wife’s first legs. In her old age the joint
pet together was Corrie. She Her and that bed. She became swollen and slowed
had taken possession of her was only aggressive twice and down her pace. She developed
as a puppy and met me in her that was when my wife tried bladder stones on top of
12
 an article (continued)

this, which meant she had vet turned it into a cauliflower, found dead a few days later.
to go on a special diet. This which meant all feeling left it. He had an ulcer on his neck
necessitated me having to walk Another violent incident led that we treated with a green
her round the village in the to Midge ripping the dead ear cream that the vet gave us. It
early hours of the morning as from top to bottom, requiring shrunk down to the size of a
well, in an attempt to dislodge the vet to staple it back sixpence but always flared up
them enough, so that she together. Holly, however, was again. His brother succumbed
could urinate but this didn’t ecstatic as she had won the to the same problem, when
always work. Come the dawn fight with her old adversary I was away at college. Male
though, she relaxed at the because she felt no pain when cats always get into fights, so
thought that she had survived Midge attacked her. it is not an uncommon thing
another night and the liquid for them to end up with this
flowed out onto the carpet. Midge was a severely injury.
traumatised dog and even
This was not the end of after Holly died, she attacked My father dug a grave for
her woes, though. She had Jack for no good reason. She Ginger and found a shoebox
diabetes which led to daily was old when we got her to act as a coffin. My brother
injections by me, and her and because of this it wasn’t painted a wooden headstone
slowly going blind and deaf. long before she too couldn’t and I spent a night-time vigil
I had to sleep downstairs for make the stairs. Once again I kneeling by the place my pet
the last year of her life as she spent several months sleeping was buried. I had bought an
could no longer get up the downstairs, while Jack went illustrated candle, which burnt
stairs. When the vet came to upstairs with my wife. down the inside and as it did
put her to sleep, he wanted to this it illuminated the picture
give her the fatal injection in I was brought up with on the outside.
the kitchen but she dug her cats but my wife was allergic
heels in. I told him it didn’t to them. My first cat, when Visiting Norwich, a market
matter as she had already I lived at home, was a trader talked me into buying
messed on the carpet enough white-haired kitten. It was a budgie. Unfortunately, my
that we were going to have accidentally killed when a mother got fed up with Spoot,
to replace it anyway, after she draught from the back door splashing bird seed all over the
was gone. We also had Jack at slammed the front door on it. carpet and so he was banished
that time and I shut him in the My mother frantically rushed to the small room by the stairs,
garage out of the way. He and around the neighbours, trying where he became neglected
Holly were best friends, so he to find a replacement before I and sadly died. Yes, I felt
took her departure very hard, came home. When I arrived guilty about this and still do.
howling in such a mournful back from school, apparently
way in the garage, I felt guilty my first remark was, “My, The only other pets we had
about putting her down for Whitey has grown since I left were goldfish, which we got
years afterwards. this morning!” when I was very young. I tried
to bury them in the garden, to
A few months before The next pet we had was a see if they could swim through
Holly developed diabetes, ginger cat. She gave birth to the soil as well as they did
we acquired Midge. She several kittens before dying. in water. Luckily my mother
didn’t get on with Holly and We kept her last three — a caught me and saved them.
shortly after we got her, she ginger tom, a white tom and She bought exotic fish that
accidentally bumped into her a multi-coloured female. were kept in a tank. Eventually
in the middle of the night and The ginger tom got shut in they all died from a fungal
bit off a piece of her ear. The a neighbour’s shed and was disease called white spot.
13
 an article

My journey in getting an autism diagnosis

by Katrine

I am a 55-year-old adult with diagnosed autism- I always struggled at school and even more
spectrum disorder. I was born in 1963 in so as I did not have my support of my cousin
Edinburgh and I lived with my parents and Sheila when we lived in Ashington. I was
two sisters in Jedburgh. I along with my family bullied a lot in Plaistow because of my unusual
moved to Ashington in Northumberland, the Northumbrian accent. I have always struggled
June of 1965. Then suddenly without much in reading fictional books but would prefer to
warning we were moved from Ashington to read reference books, especially encyclopaedias,
Plaistow in London in January 1971. On my my mother’s nursing medical books, large
seventh or eighth birthday I invited my school dictionaries and atlases. I was enthralled by
friend and other people I knew to my birthday the Apollo moon landings and had a very basic
party. It was my only birthday party with anyone understanding of astronomy and meteorology
from school as I was mocked because I gave which I would have liked to pursue but did not
them a talk about all I knew about astronomy have the same opportunities that I do now. I
which they found boring and felt that it was an have always had sensory sensitivities to noise
old-fashioned birthday party. It was not a buffet but as I have got older it has got worse, not
one, as I had a traditional sit-down tea. I was less.
deeply hurt especially that they did not find my
astronomy talk interesting as it took a while I was taken out of school at the age of 12
for me to write. I greatly struggled at school as I was told that I could not cope with going
especially with my handwriting. I was told I had to the Prince Regent Lane Secondary school
poor comprehension skills. My school reports in Plaistow, as they felt it would worsen my
from my schools in Plaistow were very brief, epilepsy. My mother once remarked that she
only consisting of one line or two words. Most told me that I was like a square peg trying to
teachers said I tried hard and that when books get into a round hole and that the educational
were being passed out, I would be missed out. I system had failed because it did not appreciate
know that I was deliberately missed out. I had my uniqueness. I waited until 1978 until I
poor grammar, spelling and handwriting, reading was found an appropriate school, a Catholic
and arithmetic skills. I also had extremely poor boarding school for children who had epilepsy
co-ordination and balance as well as eye-to-hand and I was only there for a year and I was not
skills. I had very weak wrists as well as my back put forward for any exams when I was there.
and a clicking/flexible jaw. I still have very weak
and flexible wrists and a clicking/flexible jaw. During the school holidays, and when I was
taken out from school, I read reference books
I was sent to a child-guidance clinic in 1973 which included dictionaries, encyclopaedias
which I never found out why, as I thought it was and atlases. From 1979 to 2013 I have been
due to my epilepsy. I would stutter when under mainly in employment-training courses, which
pressure, and I was an excitable child and was did not help me even though I worked very
always full of energy. I was easily distracted as I hard and I was held back by my lack of “soft
had a very short attention span. I never tried to skills” and no social network. In November
fit, as I did not know I was different and did not 2013 I referred myself to the mental health
have any coping strategies, as when I could not charity MIND where, through their help, I
cope there was not anything I could do to make was referred for an autism diagnosis which
me feel better. I received on the 13 November, 2014, but
14
 an article (continued) and a letter

was not offered any post-diagnostic help. My As an adult my sensory sensitivities have
mental and physical health deteriorated greatly got a lot worse. I rarely ever go and visit shops,
and I was referred in 2017 to the mental health supermarkets and shopping centres due to
outpatient clinic where I asked to be referred extreme sensory overload of unfamiliar places,
for post-diagnostic therapy, which I have bright artificial lighting, crowds, loud as well as
finally accepted as it is generally only given to sudden noises and strong fragrances and chemical
those between the ages of 18 and 30. odours and smells.

Dear Asperger United, just join in. Nobody notices you, although there
were a handful of times I wasn’t allowed to play
hi, my name is Dan. I am writing to pass my because of “unfair teams” or other excuses.
comments on a few subjects related to AS but Towards the end of year six a major thing
as well I wish to share my story. I’m not entirely happened. Once again I found myself being
sure: I think it’s got something to do with talking chased. Unfortunately, I ended up leading myself
to somebody who can really understand. What I into a secluded area. There were about four year-
mean is, telling my story to somebody else with eight boys and they messed me up fairly bad but
AS, so I’ll start from the beginning. thankfully when I went to hospital they said I
would be alright, but I had one heck of a shiner
From about the age of 7 I noticed I was on my eye after that.
different. I had next to no friends whilst
everybody else had plenty of them. I moved I was taken to a different school and the boys
about a bit so went to three different first schools, who attacked me were not punished because
two different middle schools and stayed at the nobody saw them do it, plus I wasn’t even sure
same high school. It was upsetting because every who it was. I could recognise their faces but I
time I moved school I told myself that I would was never good with names.
use this as a chance to make friends and keep
them but I never managed it, of course, because After that I saw a lot of people — educational
at break times I wandered around alone. psychologists and other professionals — but
none of them ever mentioned AS. Similar
I was a big target for bullies and I was also things happened throughout my school years
overweight, ginger and wore glasses, which made but nothing as major as the attack. Then a
me stand out even more. So you can probably woman came to see me. She told me she was
imagine the amount of taunts I put up with on a psychologist and I had been referred to her.
a daily basis and I tried everything to get out of Anyway, I was admitted to a place called the
school. I pretended I was ill, tried to sleep in but Roycroft clinic. It’s a type of hospital for people
curiously never “bunked off”. This is because I with mental disorders. I was assessed and was
was told it was completely wrong to leave school given a formal diagnosis of Asperger syndrome
when I’m not supposed to. The worst thing was and when I learned about it I started to realise
I couldn’t do much out of school either because why my life had been the way it was.
I used to get chased by bullies around the streets
near my home. Now here I am living at the clinic, learning
new social skills every day, slowly improving
Anyway, I moved to the country and my and getting prepared for adulthood. The only
house was in the middle of nowhere, so I only question I was asking myself was how come it
had to worry about it at school now. I tried to took so long to be diagnosed with psychologists
keep my head down as best I could. By now seeing me at school. I thought one of them would
I was in middle school, sixth year. I was very have picked it up. However, I am lucky because
good at hiding, plus I played football a lot. You the help I am getting and my life ahead of me
don’t need friends to play football usually — you seem to be making up for it!
15
 an article

Fear and anxiety

by David

Hi, readers of Asperger United! I am David, the reverted to the fearfulness I felt when I was a
Compulsively Creative Man. I want to disclose small boy and this bothers me in every waking
my history of fearfulness and acute anxiety, and minute. I am not afraid of flying but I have an
conclude with how I have felt after what I call a absolutely mortal fear of missing planes, that gave
mindquake hit me when I lost my doorkeys. I am rise to a confrontation with the police at Glasgow
minded to write a far more detailed account. Airport in the small hours, because I had arrived
at about 11pm to be sure of catching a plane that
At age 5, people said that I had bad nerves left about 7am.
because of the War (consider German children
from Hamburg, Dresden and such born between I have written detailed accounts of several
1937 and 1944, who heard the RAF bomb really hurtful social disasters including the
German cities. Is there a simply colossal incidence occasion when Glasgow police picked me off a
of mental problems amongst these people busy street and dumped me in a mental hospital.
compared with their peers born in Ireland?). My
very earliest memories are of being scared of: In 1995, when I had read Goleman’s Emotional
steam trains, horses, dogs, waves and fireworks. intelligence, I was hiking near Cumbernauld when
At primary school in Sussex I was the butt of a horse whinnied and I fled, then it whinnied
scorn becasue I showed these fears. Children again and I felt that I was about to die. Goleman
called me loony, and how that hurt. For years I explains the amygdalic shunt, which enables
feared that I was a lunatic and would be locked people to escape danger and refers to a sober
up for life in a lunatic asylum if I disclosed Englishman whose reaction times were quick
what are in fact “pure OCD” hurtful, intrusive enough to escape the sinking Estonia.
thoughts. A mega-mindquake hit me in 1953
when I was expelled from a grammar school I deduced that my amygdala greatly amplifies
merely for using swear words! This gave rise certain sensory inputs to give rise to frequent
to scars in my mind that persist even now — a false alarms and this induces overwhelming
fear of offending people, particularly Christians flight or freeze in my brain, never any impulse
like my late father. I will not elaborate how at to fight. I had a major row with my father about
remedial school the headmaster administered the Cumbernauld horse affair. He said that I had
psychoanalysis, except to say that it gave rise to made it all up to justify my besetting vices!
lifelong strife with my father. I overcame fears of
fireworks and other things in those years. In 2005 I forced myself to overcome acute
vertigo in order to photograph a unique coastal
I suffer absolutely overwhelming anxiety in feature. I dashed to and fro, peering through
any formal social situation, so I avoid them — successive camera viewfinders and strode away
dodging my parents’ funerals by conveniently acutely cognisant that I would always suffer
spraining my sound leg! I overcame fears by physical vertigo. I also suffer acute social vertigo,
climbing lofty mountains alone. When I had as at a recent wedding, when I was absolutely
climbed enough precipitous peaks it gave me the sickened by the opulence and expense.
confidence to face up to other kinds of fears.
Since loss of my driving licence and onset of Fear of catastrophes abroad has paralysed
cramp when climbing, I can no longer extirpate me quite often and held me back from visiting
my innate fearfulness in this way, so I have countries I perceive as dangerous. I vacillated
16
 an article (continued)

about visiting Sweden this year. On Friday I damaged by everyday sensory inputs that are
had to decide whether or not to go, so I spent greatly amplified by the amygdala and nearby
ages vacillating. I reasoned that if I ducked the structures. It would appear that in my own case
challenge it would be much harder to summon this explains all my fearfulness and anxiety. I
the courage to book a trip anywhere in the can recall incidents of my primary school years
future; Stockholm is a safer city than London! So that would agree with Szalavitz. Whilst this
I booked and paid for a week in Stockholm, then elegantly explains my malfunctioning brain,
took a bus home to discover on alighting that I they cannot, per se, extirpate my fearfulness and
had lost my doorkeys and memory stick. This has anxiety. If perhaps my very own essay on the
given rise to by far the worst mindquake this year, Szalavitz findings (on that lost memory stick!)
after a workman made off with my wallet, and I had been distributed to all involved with dealing
had lost a cheap fixed-focus camera with exposed with autistics it might enable the police and
film inside. I shall struggle with words to define others to understand how people like me are so
what has overwhelmed me in the past few days. overwhelmed with mental pain beyond the limits
of language that we behave oddly.
It was as though an atom bomb had gone
off in my brain. Alone in my home I have I have to live with myself! After mindquakes
been shouting abuse at myself. It is as though I feel quite unfit to have friends or belong to
my father’s ghost is beside me shouting at me society, so I have to banish myself. This greatly
that I am absolutely irredeemably flawed. I am exacerbates the problem and it is amplified
innately careless, untidy, negligent, slovenly. I by other fears: that of wasting people’s time
have no redeeming qualities; I have regressed or boring them and paramountly offending
to that guilty boy who in 1953 was dared by his them with disclosures of my problems. I also
classmates to say things like “I want to shag you.” dread situations where I am overwhelmed
Since I have not had a career since graduating, I with emotions, for then I perceive myself as
am absolutely crushed by guilt feelings for “being effeminate or childish. It is small surprise that I
a parasite of Society”; I really hate myself after reject the Christian religion. In place and largely
events like losing doorkeys. This self-disownment due to my frequent mindquakes, and all that
gives rise to grim stories where I project all my follows from the mental distress, I have been
bad feelings into the protagonists. spurred to invent possible management strategies.

Once a workman stole my chequebook and If people are pitched into mental distress
emptied my account. Though the status quo ante beyond the limits of language they desperately
was soon restored, at the time I felt the way I do need to contact trustworthy people so as to
at this moment. All the pleasurable anticipation disclose every hurtful detail and find by means of
of my trip to Sweden has been replaced by an the collated experiences of mindquake sufferers
irrational dread so strong that I feel that I am strategies to restore the status quo ante swiftly
being carried on a swift current over a figurative enough to restore their dignity and self-esteem.
Niagara to something far worse in Stockholm.
Readers, I want to set up an organisation
Szalavitz, in a 2008 article in New scientist, where such people can turn for help. For we all
collates findings about autism from autopsies need to forgive one another for lapses caused by
of autistic brains and other observations. our Asperger brains.
She explains how the amygdalas and related
structures are greatly enlarged whereas other Postscript: my keys and memory stick were
brain structures, apparently controlling social found after I had inadvertently dropped them
behaviours, are somewhat atrophied. She brings in a box of cotton reels at a recycling centre, but
together findings that seem to prove that the please, readers, appraise my blackest feelings
brains of autistic children are overdeveloped and about myself and comment on my disclosures.
17
 an article

Pets

by Anne-Laure

Pets can give so much to their fits into my routine, then I do according to my own standards.
owners: affection, loyalty, not even have to think about And that extends to my pets. My
company, an incentive to get schedules because everything dog has to be the best-trained
some fresh air . . .. But I also is predetermined. Routines dog ever, my horses have to obey
think that as a person with also act as motivation when my slightest commands and my
Asperger’s syndrome there are the weather is horrible, easily chickens . . . have to lay eggs
peculiarities to my interactions overcoming any temptation at (which they do). It is sometimes
with my pets that neurotypical laziness. difficult for me to be patient
persons may not be aware of. while my pets get things wrong
These are what I would like to before finally getting them right.
share with you today.
Communication I think I have improved on that
subject in the past few years
My dog and horses require a
A dog, two horses, and but I still allow any failure on
minimum of communication
chickens are currently part their part to cut me too deep. I
from my part, either through
of my everyday life. I enjoy need the strength and mental
words or body language.
a lot of quality time with resources to let my rational mind
When I am close to, or in, a
them, which most people can rein in my fiery emotions and
meltdown I do not want to
imagine easily enough, but find the positives in our training
communicate with anyone, and
there are three aspects of my sessions to keep believing in
that extends to my pets. My
relationship with them that myself as a trainer and in my
dog often looks me in the eye
are not easy to admit, even pets as the best pets that ever
while waiting for a command
to myself, and sometimes walked the Earth. We are
or for a toy and, when I am
difficult to deal with. getting there.
tired, it is as difficult to meet
her gaze as a human’s. My
Routines Those three areas in which I
horses read and respond to
find it difficult to manage a life
verbal commands and to my
First of all, when a new pet with pets are part of the reason
body language pretty well, and
barges into my life, I have to why I shall never have children.
keeping those communication
rethink a lot of my routines. A
channels clear and precise
pet brings a lot of change and,
when I am emotionally
as many of us, I do not like
drained is a real challenge.
change and I find it difficult
Sometimes I lose my temper
to adapt. New routines have
and get angry even though I
to be planned, tested, tweaked
know this is only going to be a
until they work both for
setback in our progress.
the new pet and for myself.
That is a time of unsettling,
exhausting changes. Even Perfectionism
getting up a little earlier and
going for a walk with my Finally, I am a self-confessed
dog before breakfast took me perfectionist. I push myself
months to get used to. The to achieve as much as I can,
bright side is that once the pet to be the best person I can
18
 stuff you might like to know about the Spectrum

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(contact information for the Spectrum is on page 2 and

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The Spectrum
magazine

Autscape 2019: an autistic conference

High Leigh Conference Centre, Hoddesden, Hertfordshire
Monday 12th August — Thursday 15th August, 2019

by the organisers

An annual residential conference and retreat Registration will take place via the website
organised by and for autistic people. and details will be posted there.

This year’s theme: Making Connections. Further information regarding the

conference, registration and attendance fees is on
What we offer: our website:
• An autistic-friendly environment
http://www.autscape.org
• To meet other autistics with or without a
diagnosis, including those with Asperger’s Email enquiries:
• Non-autistics are equally welcome
[email protected]
• Workshops and presentations
Postal enquiries:
• Autistic-friendly leisure activities including a
sensory room, “sparklies in the dark” and crafts
Autscape
• Day-time childcare included 101 Broad Park Road
Henley Green
• Full board — three meals a day plus tea and
Coventry
coffee breaks — included in the price
CV2 1DB
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mainline station to the venue.

The Spectrum, c/o The NAS, 393 City Road, London EC1V 1NG
Telephone: 0808 800 1050 (free from most landlines) or
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Except where stated, all material © The National Autistic Society 2019