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Asperger

Produced by and for autistic people

United
Edition 90 April 2017
Asperger United
Asperger United is a magazine run by and for Asperger United was founded in 1993 by Pamela
autistic adults (although some parents subscribe Yates and Patricia Howlin, in association with
on behalf of their under-sixteens). The magazine the Maudsley Hospital, and Mark Bebbington
aims to put people who have the condition in and Judy Lynch of the National Autistic Society.
touch with each other and to share information so
that they can lead more independent lives. This was in response to a recognised dearth
of services for people with Asperger syndrome
Please note that AU receives over 200 letters and the potential for self-help and networking
each quarter so it is not possible to respond as a means of support for this group.
to every one, nor for every contribution to be
printed. Discussions on editorial choices will The provisions for editor’s and sub-editor’s
not be entered into. AU protects the identity of post was to develop a publication that was
contributors by not printing full names unless the truly the voice of the people it was aimed at.
writer asks for his or her full name to be used. This post also provided the possibility of work
experience and responsibility and has benefited
Asperger United is free. To subscribe you, those who have held the position. These are
we need your postal address. We ask for a Richard Exley, David Wright, Martin Coppola,
contribution of £9 per year from overseas readers Ian Reynolds, John Joyce and the current
and £15 from professionals and institutions to editor, the Goth (who does not wear black).
cover postage costs. Please make cheques payable
to the NAS. Organisations requiring multiple Pamela Yates provided support and advice
copies: no extra fee, please get in touch. to 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 Publications Team “appropriate name” for the publication.
This was suggested by Anna Kaczynski,
NAS phone support: the Supporter Care Team formerly Cohen.

Please send all correspondence and subscription requests to:

Email: asp.utd@nas.org.uk All we need is your name and address and we


will add you to the mailing list — free of charge.
Asperger United
c/o The National Autistic Society Thank you to Graeme Lawson for
393 City Road producing the AU logo.
London
EC1V 1NG Please note that the views expressed in
Asperger United are not necessarily those of the
Tel: 0808 800 1050 (free from most landlines) or editor, the National Autistic Society or those
Tel: 020 7923 5779 (geographical charges apply) involved in the publication of the magazine.

large print
Asperger United is available in 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 AU by 8 May 2017


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editorial
Welcome to the April edition of Asperger United. On the back page of the magazine is an advert
for Autscape, which I again hope to attend, and to
I hear that my whimsical editorial last issue see many of you, both new and old, especially as
caused some of you some confusion. At heart, it is in a very central location compared to where
I was being silly and there was no more sense in most readers live — Northampton. More readers
what I was saying than in the poem Jabberwocky. live within two hours’ travel than for any other
Some of you also tried looking up the names Autscape in the past six years.
I used in a dictionary, but of course, dictionaries
seldom include names — googling them would On the downside, I can’t imagine that
have been more effective. I hope you aren’t too Northampton offers the beautiful countryside of
annoyed with my sense of humour. recent years, but seeing more of you will certainly
make up for that!
I’d also like to remind people that you can send
submissions on any subject. If it doesn’t fit the yours,
theme, I might publish it anyway. Not everything
in the magazine fits the theme — it’s only a the Editor
guideline to help you write something, if that is the
sort of help you need. Please don’t feel you can’t PS. In these days of computers, postscripts are
send something in just because of the theme. unnecessary, as you can just edit the text!

the anxious edition — suggestion for next issue on page 15

Contents

Photograph. . . . . . . . . . . . . . . . . . . . . . . . . . cover Letters to the Editor . . . . . . . . . . . . . . . . . 10-11


by Jo a first step from KJ, one about
problems and autism awareness from Ann,
Letter about anxiety . . . . . . . . . . . . . . . . . . . . 4-5 one about speech from Tony,
feature from Christopher one replying to Humbug Recipient from Valerie,
and one about phobias from Natalie
Coping with anxiety . . . . . . . . . . . . . . . . . . . . . . . . 5
feature by Chris Runaway horses – article by Lois . . . . . . . . . 12-13

Three letters . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Uncertain futures – article by Malcolm . . . . . 14-15


one about coping with groups from Barry,
one about being yourself from TVworm, and Poem by David . . . . . . . . . . . . . . . . . . . . . . . . . 15
one about AU themes from Kevin
My journey with Orwell – article by Philip . . 16-17
Notice about the resubscription project . . . . . . 6
by the Goth Realise your talents and pursue your dreams . . . . . . . 18
article by Melissa A Joy
Pen pals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7-8
The rules of Asperger United . . . . . . . . . . . . . . . 19
Letter about thugs and autism awareness . . . . . 9
from Eric Autscape – advert by the organisers . . back cover
3
feature
Dear AU, As an Aspy in a relationship I don’t know
when to let things go because I can’t see the
I wish to contribute to the magazine on anxiety. effect it’s having on the NT until I end up
anxious and depressed. It works like this: I think
I received a diagnosis of Asperger’s syndrome my partner has expectations. I try to meet them
at the age of 53. I have had another breakdown but fail. They get upset and I think it’s my fault. I
and am back on medication for the third time in make it worse by trying to sort it out and they get
seven years. This latest breakdown was caused by frustrated and explode at me. The shutters come
the build-up of pressures at home resulting in an down, I withdraw. Partner apologises. Twenty-
overload of anxiety. four hours later the shutters come up and I relive
in full Technicolor the video of the incident
I recognise that most of my anxieties are which I play over and over again causing me great
probably due to being Aspy. I am not a quitter. stress and anxiety. It takes about four days before
I am a finisher. I am a decision-maker. I tend I can turn off the video and return to normal by
to pursue a goal beyond the limits where others which time there is another bag of expectations
might just give up. The bigger the challenge the to deal with. I like having a partner to share life
better and sometimes that is not good for me or with, but a woman’s needs can be manifold.
my family because I don’t know when to stop.
My initial response to shutdown inside is
My anxieties are normally caused by the way something I think I developed in childhood.
I respond to external influences on my life. This My mum was quite violent towards us children.
could be a rise in council tax or water rates or My teachers used to slap and punch me. Fellow
a cut in benefits. It could be the introduction pupils would make fun of me and I was severely
of new traffic lights where none has ever been bullied during my three years at an army
needed. It could be the way other people treat apprentices’ college. By the time I was 18 I was
me at work, in the street and at home. It could be used to being a punch bag for other people,
conflict in a relationship whereby the partner has emotionally and physically. My response then, as
expectations of me. I feel that others are trying it is now, was to shut down and hide away. What
to take over my life without my consent and that might then happen causes me great anxiety.
causes me stress and anxiety. I like to be asked.
Add to that hypersensitivity with noise and touch Coping with anxiety has led me towards
and my mind is a time-bomb of anxiety. I have harmful behaviour, abuse of alcohol being the
to control my environment as much as I can. major one. In dark times this has led to self-harm
and attempted suicide. Nowadays I have learned
My main disability is in the area of theory other strategies like controlling my environment
of mind. I cannot predict how another person and activities to reduce anxiety to an acceptable
might behave or what they might be thinking. level — that is, zero! A course of cognitive
I misread body language. Although I can predict behaviour therapy has been very useful.
a person’s needs at a practical level I cannot do
that in a relationship at an emotional level. When Family life has become very difficult. I
a partner has expectations of me I really do my love my daughter. I love my wife. But having
best to try and meet them. However, I usually fail them together in the same room has become
when it comes to emotional expectations. I can’t more and more difficult for me ever since my
think on that level on the hoof. I get as much daughter became a voice, presence and challenge
out of being with a cat or a parrot as I do with for her mum. She is 11. In the present crisis I
being with a human. But animals are easier to be live at a friend’s and visit the family home daily.
with because with them there are no emotional Everything is amicable and it’s working for us.
expectations. I think even some NTs might I’m doing better and my wife is too, not having
sympathise with that one. an anxiety-ridden husband to contend with.
4
feature (continued) and a second feature
I’ve noticed with age my tolerance levels For now I’ve limited my responsibilities. I
for coping with anxiety are reducing. I’m kind live simply and avoid stressful situations doing
of accepting that if I’m to remain living in only the essentials. I stick to the acronym HALT:
society I’ll probably have to be on medication to don’t get too hungry, angry, lonely or tired, and
control anxiety for the rest of my life. But that’s I stay occupied in enjoyable distractions.
no different to other lifelong conditions like
diabetes, is it? Christopher

Coping with anxiety


by Chris

I only found out about working on my computer. It Going out does not equate
Asperger’s in the past eighteen has been like this for thirty to socialising. I can go out,
months and was diagnosed years. I’ve been very dependent but I don’t have to talk to
when I was 41. I’ve wanted to on my parents, but am able to people. I don’t go to pubs and
write something for Asperger live a fair proportion of my life or cinemas, shopping, or any
United ever since I subscribed. independently. of those sorts of places. Places
I go are quiet — the seaside or
When I found the theme All my adult life I’ve tried occasionally I go to a book fair.
for the next magazine was to do the things I want to do, I don’t go out very often, and it
about anxiety I thought there buy the things I want to buy. is usually on a nice day so I can
must be something I can write I’ve never let peer pressure take some photos. My recent
about. But what? Thinking bother me and I think that holidays have been on my own
about it and worrying about is very important. A lot of and I stayed clear of all the
it was making me anxious. the people I’ve found myself town centres but still managed
So, I did what I normally do surrounded by at college and to have full days out.
if something is making me work have been older than
anxious. Stop and think. me or younger than me. I’ve Everyone has anxiety at
Eventually thoughts and ideas never tried to make friends some point. By getting out
form and I write them down. outside of college and work. If and doing things you learn to
Once they are on paper the people want to talk to me that cope with that anxiety and find
anxiety starts to go away. is fine, but I won’t go out of strategies that are good and
my way to try and be sociable bad for dealing with it. The
What do I need to reduce and I certainly avoid small talk good things you do again, the
my anxiety level? What do we like the proverbial plague. My bad things you don’t.
all probably need? Time and anxiety is always caused by
space. To be alone and to think other people. On my own I am Now I have to pluck up the
and collect our thoughts. I’ve fine and quite content. courage to hit send. There. It’s
always retreated to my room at gone. Sent. I cannot change
the end of a busy day at school Having a hobby reduces what I’ve written. Are there
or work. My parents have let anxiety. I must have a dozen any mistakes in it? Will it be
me do this. I’ve never been hobbies. I can chop and published? How long is it until
pushed to socialise or make change between them all as the next edition? Arrgghh. I
friends. It is not what I wanted the mood suits me and if I get am starting to get anxious. But
to do. I am much happier bored of one I do something is it anxiousness, or it’s close
reading a book, watching TV, else for a while. relation — anticipation?
5
three letters and a notice
Hi,
Resubscription project
I would like to know if anybody can give any
useful advice on coping with groups of people.
notice by the Goth
Are there any self-help books available?
More of you have received a flier with this
Sometimes I go through rough times where magazine asking you to resubscribe. Please
I feel I can’t deal with things or where I feel respond in one of the ways listed on the flier.
I cannot communicate with people and that I People who don’t respond will be sent fliers three
should just go into shutdown mode. What does times, and after that their subscription will end.
this mean?
But please don’t worry: if you want to continue
Thanks again, Goth. Hope to hear back to receive AU, just respond!
soon.
If you have not received a flier there is no
Barry need to respond, though if it puts your mind at
rest, please feel free to let me know you want your
subscription to continue.

Hello AU bookworms,
Dear Goth,
I am an individual with autism. I am
different. It is very clear that many do not like this is the third email which I have sent you
any to be different. within less than a week, and I promise it will be
my last . . .
I happened to come across this quote, “Be
yourself, everyone else is already taken.” It is I am full of admiration for your editorial
a quote from Oscar Wilde. This makes sense skills — each issue of AU reveals the amount of
to me as I take the view that trying to be care which you take over every issue, and your
anyone but yourself will eventually eviscerate “mission” to provide a high-quality, responsive,
your mental health. And then I came across and relevant product for your subscribers.
this quote from Ralph Waldo Emerson, “To
be yourself in a world that is constantly trying I noticed your suggested theme of mental
to make you something else is the greatest health, but, in a way, that seems a little sad — it
accomplishment.” So, to be yourself is not only suggests that Asperger’s syndrome is some kind of
good for your mental health, it is recognized as deficiency.
being the world’s best accomplishment. Who
knew? But, ever-so-slightly-tongue-in-cheek, might I
suggest that Asperger’s could also be viewed as a
I may be giving the impression that I am “lifestyle”?
something of a bookworm — I am not. Indeed,
whatever the opposite of bookworm is, I am. I Can I suggest, for a future issue, a theme called
do not like books — d’oh. I like TV, including, something like “my perfect holiday”?
as you may have guessed, The Simpsons — d’oh.
Best wishes,
TVworm
Kevin
PS. I like AU as well — D’oh!
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
Pen pal number 237 want) to Asperger United. You can use the Royal
Mail or email. The next pen-pal number will be
My name is Craig, I am 33 years old and given to your advert when it arrives.
live in a flat on my own in Somerset. I have
got Asperger’s syndrome and dyspraxia and
> Please note that AU does not print dating adverts,
as it is unable to provide suitable support.
am also gay. I was diagnosed with Asperger’s
syndrome and dyspraxia in 1996 when I was > Those under the age of sixteen must have parental
13 years old. My hobbies and interests are permission before placing a pen-pal advertisement
walking my border collie dog, going to the in Asperger United.
cinema, watching film and tv series, dvds,
going to the gym, listening to music and > If you get no replies, please don’t take this personally.
meeting up socially with friends and family.
I would like to hear from anyone around my
age or older. How to reply to pen pals
> Please remember to let us know the name and
number of the person whom your letter is for. (All
Pen pal number 238 pen pals are numbered by the editor, not the person
who sends in the advert.)
Hi, my name is Steve. I am a 48-year-old
gay man.
> Please remember to put your address on your letter.
> To contact a pen pal, please send your letter to
Most of my life has been spent as the Asperger United, c/o The National Autistic Society,
outsider of the group. I struggle to make 393 City Road, London, EC1V 1NG, or email
friends as I never know what to say. asp.utd@nas.org.uk

Recently, I had a pre-diagnosis done and


> We will pass your letter on to the person you wish
to contact. However, we cannot guarantee the
am now still waiting for the official diagnosis. person will reply as that is entirely their decision.
I love going on my laptop, watching > Please note that all pen-pal letters sent via Asperger
DVDs, sci-fi, cooking shows, dogs and United are opened before being passed on.
budgies. My music taste is very eclectic:
Sixties, Eighties, Elvis, Motown, Two- **Important notice —
­ please read**
Tone, plus many new artists.
Asperger United is happy to publish pen-pal
I would love to make friends with advertisements but we must stress that we are not
anyone around Shropshire or the a pen-pal or introduction organisation. We do not
Midlands. I prefer people to ask me match people up and we cannot monitor letters
questions as my conversation imagination (other than the first letter, that is sent via us) so
is poor. please be cautious when releasing personal details in
your letters. The National Autistic Society / Asperger
Thanks for reading this and hope to United cannot intervene or be held responsible for
hear from someone soon. any ensuing correspondence between letter-writers.
7
more pen pals
Sixteen pen-pal adverts have been Pen pal number 241 Pen pal number 243
held over for publication in the
next four issues, Editor. Hi! I’m Edward. I’m 17, and I Hello, I’m Patricia, 42, was
live in Ireland. I have Asperger’s later-in-life diagnosed with
and I have been diagnosed Asperger’s. I love animals,
Pen pal number 239 since early childhood (it’s mild wildlife, cinema, reading and
though). I have an interest in colouring. I’m from North-East
Hi, I’m Sean. I am 23. video games, reading, anime, Scotland. Would like to write to
I have ASD and OCD. physics, movies and chess. I’m anyone 25-plus.
looking to write to a person my
I enjoy reading and age because most people I know
writing. I can speak basic who have AS or other learning
Spanish, as I lived in Spain difficulties are around ten years Pen pal number 244
for a year, and a tiny bit of older than me. Also I attend a
Japanese, but I would like to mainstream school (no SNAs Hey everyone, my name is
learn more. needed). Any intellectual or fun Jackson. I’m 32 and I live
discussion is welcome. in the London area. I have
I really enjoy cooking Asperger’s since I was 13
and art. I can be shy but like months old.
to make friends. I am very
interested in history and Pen pal number 242 I like going to the cinema,
mythology. I have studied watch TV, online, YouTube,
it a lot. I enjoy all kinds of I am a 60-year-old female, play video games (old and new),
music and films usually, if I diagnosed only three years hanging out and travel, listen
think it looks good or sounds ago. I also have dyspraxia, to music, arts and craft, theme
good. diagnosed about two years parks and karate.
ago — both privately. I would
I look forward to hearing like to befriend others who I attend comic conventions
from you. have been late-diagnosed. I near and far as I’m interested in
love animals — I have cats and the media both from the East
chickens and hopefully this year and West. I am a fan of Marvel
a retriever pup. I love reading and DC (films and comics) and
Pen pal number 240 and studying; I have done anime and manga. I enjoy them
numerous jobs over the years; so much that one of my main
Hi, my name is Luke, went to university aged 47 to hobbies is making and crafting
I am 17 years old and I live in become a nurse; and now for outfits and props from those
Liverpool. I have Asperger’s the second time am a registered series and franchises. Plus
syndrome which makes it childminder. I love driving I even started writing a novel
difficult for me to make and walking and the seaside (first in a trilogy).
friends. I like playing the and would love to have great
guitar, listening to music, in-depth conversations about I hope that I get the chance
football, Star wars, Marvel, anything, really, and to find to have a pen pal that has the
and watching movies. out how others cope with this same kind of interests or have
diagnosis so late in life. someone to write letters to so
I would like to hear from that we can get to know each
others who have similar Thank you, other better.
interests and who are around
the same age (16-25). Sylvia Jackson
8
a letter and a filler
My Dear Goth, is gay or not. Indeed, the lovely local councillor, and have even
WPC who took my statement been invited to an interview
in common with many never even asked about my with my MSP — all within
Aspies, my polite and precise sexuality, it just isn’t an issue five days. Every one of these
manner of speech belies my and doesn’t alter the nature of agencies has been shocked to
Scottish working class origins. the crime. Just for the record, learn I’ve received no autism
It is also widely recognised that I haven’t had a date in over support from any quarter
Asperger males can sometimes fifteen years, so the gender of except my GP since receiving
be perceived as effeminate by people I don’t sleep with is a my autism diagnosis three
their peers. Both these factors somewhat abstract concept! In years ago, even during cancer
have exposed me to a lifetime the right circumstances I might treatment.
of prejudice through inverted fall in love with a person :)
snobbery and homophobia, It is sad that it takes
both of which are endemic in Police officers are something like this to raise
this grim sink town, where I intelligent people who dislike awareness, but thanks to this
remain trapped by poverty and bullies as much as we do. horrible event lots of people
lack of appropriate support. Individual officers may not be in authority have become
autism-trained, but they are aware how vulnerable and
Five days ago I was sympathetic and will readily unsupported autistic people
terrorized by four people offer liaison with a colleague are. For me personally, it has
on a local footpath I’ve trained to speak to vulnerable hopefully been the catalyst
walked since I was a child. people. Even if someone to get some practical help at
It began as a homophobic shouts “poof” at you in the long last, so other victims of
hate crime, compounded by street, or harasses you in a bar, hate crime should know just
wild allegations of being an they want to know about it, how seriously it is taken by the
offender, triggered entirely by and will treat the offence on a authorities, and that some good
my accent, when one of these par with racial abuse. Verbal can come of reporting the bullies
strangers asked me for tobacco. and physical assault are deemed in our society.
The raw hatred displayed equally serious. At the risk of
by these thugs placed me in repetition, it does not matter Footnote: this is the current
genuine fear for my life. My whether you are gay or not. state of play, but perhaps you
existing anxiety disorder has would like me to enlarge or
naturally gone into overdrive Although I was lucky update this piece before going
since. Sometimes I start not to have been injured, the to press.
shaking and burst into tears police have advised they will
without warning and every be seeking convictions, with Tashi delek!
muscle still aches from my a real likelihood of custody as
panic stricken flight from that the outcome. It is also urban Eric
familiar place. mythology that the police
cannot act without witnesses:
These perceptions and CCTV is everywhere and can
prejudices must affect other place people near the scene In the beginning
Aspie men, regardless of their and time of reported crimes;
sexuality. It is important this and a victim statement is
therefore to make people enough to press charges.
haiku by Cliff
aware that the police treat all
homophobic verbal or physical Since reporting the Mad person married
abuse as the same gravity of incident, I’ve been contacted by stupid person: they begat
hate crime, whether the victim the police, Victim Support, my civilization.
9
letters to the Editor
Hello, Dear Goth, saw me (even with diagnosis!). I
am treated as if I’m the problem
I have had two of thank you for your letter and but at least they allow for it now,
your magazines up to sorry for not replying sooner. so I’ll put up with it until such
now and I like them a time as it is appreciated that
very much. I think My problem (with housing) they were a good deal more
they help me by just is only now (after over a year) mistaken than they could have
knowing I is not alone beginning to be taken seriously. ever dreamed! No problem. That
in a lonely part of the will take a good long time as there
country where it’s either I have been trapped for the are precious few at the moment
being surrounded by duration in a situation that, who are able or willing to see the
very autistic people or because of my experience, sensory massive benefits inherent in the
getting dumped into sensitivities and response-based condition and to demonstrate
groups by my social behaviour (living in the “here- that what needs to change is not
worker that if full and-now” and unable to entertain the autistic community but the
of depressed autistic or understand objective-based attitude towards it! It seems to me
or ADHD people behaviour which is directed that the more disabling symptoms
or “normal” people by some or other aim in the experienced by the autistic
who think my noise future and is adopted by the individual are caused by his being
sensitivity and “strange” “neurotypicals”, pitching us exposed to a world that is not made
behaviour is funny directly at odds with each other) for him (corrupted by the behaviour
or frightening! I am is entirely intolerable, but nobody of neurotypicals) rather than being
very happy with your would believe me that the attributable to the way he would be
magazine. Thank you. problems I was experiencing were if that was not the case and the fact
I has never written relevant and I was being blamed that he is outnumbered — society
anything before, this for my protests (and all associated is tailored to suit the majority. Of
is a huge step for me. behaviour). Story of my life, and course there are exceptions but I do
I would like in future scary! Only I thought that having believe that we get incredibly “bad
to ask or make pen- a diagnosis would help people press”, even from the specialists,
pal advert, but not just understand (I was diagnosed at and it grieves me very much!
yet. I is not ready. I the age of 48). It doesn’t. At best
would appreciate, like, they patronise (pity) you for being Sorry about mistakes. I don’t
feedback on what I “disabled” and make no attempt use a computer as the light “burns
write please. I like to appreciate that not only are out” my eyes (rapidly gives me a
feedback and tips. I the problems experienced by the headache, etc., and my eyes appear
put in an envelope with autistic entirely understandable and to be failing). I’m very tired now
stamp and my address logical(ly reasonable), but that their so must stop.
but it’s okay if you don’t, “orientation” is more “in tune”
I know people busy. with the world and the way all Keep up the good work. (And
bodies respond in it! don’t forget that you’re not as
Thank you for your “disabled” as other people tell you
time, I don’t think we’re quite the you are, or make you feel.)
problem we’re made out to be
KJ and I think people will eventually Better not “go on” — I have a
wake up to this. In my case the lot of trouble suppressing that desire!
I have replied as asked, as housing association (well, one
I try to with everyone who member actually, who is the “chink Best wishes,
submits a letter or article to in the armour”) is now realising
me, Editor. that it is mistaken in the way it Ann
10
three more letters to the Editor and a filler
Dear Editor Dear Goth,

I think one of the problems the autistic have I would like to give Humbug Recipient
with speech is down to the OCD side of their something to look forward to. They mention on
personality, which shows up in perfectionism page 6 of Edition 88 that they are not aware of
(doubt or lack of confidence) in the higher- any politician from any UK political party who
functioning. With names your mind goes, “Is does not say that she/he subscribes to the idea of
that the same sound, despite the difference fairness and that this is humbug.
in spelling or is it a different pronunciation?”
With just words, your mind is thrown by I would like to bring to the attention of all
syllables in the same way, mostly because readers of AU a new political party that already has
of all the variations in vowels and vowel 65,000 members, despite only being in existence
combinations, but also because of double letters, for eighteen months. It is called the Women’s
silent letters, archaic and foreign variations. Equality Party but is open to men too. Their leader
To me it is no wonder we don’t speak until Sophie Walker has a daughter who is autistic.
three or four, under these circumstances. On Their policies include sorting out hate crime; help
top of this, as Dr Cheri Florance points out in unpaid carers; Proportional Representation; ending
Maverick minds, we abandon speech for vision. economic inequality; flexible working and so on.
This further confuses things because we take They care about society and, in this case, I believe
photographs of reality, not film it as a sequence them, even though normally I am a cynic.
of images. Like a roulette wheel, we see words
click slowly round to form a sentence, whereas All Aspies should look at their website and
ordinary people don’t slow down this process watch this space.
and rush through, making mistakes just in order
to say something and communicate to others. Regards,

Perhaps learning to sing would help close Valerie (woman, unpaid carer, Aspergic)
these gaps and make learning easier as has
been found with other processing problems
— stuttering, Alzheimer’s and Tourette’s for Travellers
instance have all found this beneficial.
by Glenn
Yours sincerely
We are all travellers in this life, so live this life with
Tony love, kindness, understanding, and an appreciation
for things bright and beautiful.

If this does count as anxiety please could you grateful for any help I receive for free as I feel my
print in your magazine. If not then maybe a fears are like living in a real horror film.
future issue may be suitable for such a thing.
My fears are needles, creepy-crawlies or
Hello. My is Natalie, I have mild autism, animals that ever bite, sting or are poisonous,
I am 35 years old and I live in Kent. I am heights, pain, walking on snow and having a smear
writing this as I was wondering if there are any test.
counsellors or psychotherapists who read this
magazine who could help me overcome my I also have problems sleeping, though I don’t
fears. Unfortunately I am on benefits so I can suffer from insomnia. I also keep washing my
not afford to pay someone to help me, but as hands too much due to the phobias of germs as I
it’s a new year I am very determined and very like to be clean.
11
an article

Runaway horses
part one

by Lois

I kept reviewing that day when I got “the news”, what I needed was a super-fast rapid-processing
piecing together the bits of information I could computer of a brain that told me how to solve the
remember, but my brain couldn’t remember it problem. After all, I was a problem to be solved
all. I couldn’t get the full picture. I could only wasn’t I?
remember bits of a jigsaw and someone had
removed the vital pieces so I couldn’t make sense If I took too long to process this information
of the picture I was supposed to be making. then that would prove all those people out there
Confusion lay all around me. were right. It would mean I had Asperger’s.
Aspergic brains work more slowly so I couldn’t
I knew I was probably in shock too. They say allow them to be right. I had to work faster, I had
the brain goes into protection mode when you to try harder. Compute, compute. Work, darned
have a shock or an accident and this certainly brain, work.
felt like a near death experience for me. By not
remembering it all the brain was supposed to be But the information I was devouring from
protecting me. But I wanted and needed all the books and websites was exhausting me. I
information, now, and my brain was working knew I was in a state of mental and physical
against me, no matter how much I begged and exhaustion but couldn’t allow myself to stop. I
pleaded with it to work properly, it kept its secrets raged on. I was riding a team of wild horses,
locked away and it wouldn’t give up the key. My bay horses, manes flowing in the wind, hearts
own body was working against me and I hated it. racing, sweating bodies of pure gleaming muscle
galloping flat-out whilst I whipped the reins
Suddenly I hated everything about my body. hard, urging them to go faster and faster. I didn’t
If it had Asperger’s, it was doing me no favours. care if my body cried out for food, for water,
It had let me down. It wasn’t working properly for rest. I ignored it’s basic needs fuelled by the
and I was as mad as hell. delusion that if I just got all the information, I
could make sense of it all, I could come up with
During those first few days after diagnosis, my own conclusions and I could decide if I had
people kept telling me Aspergic people Asperger’s, not some fancy doctor with letters
had slower thought processes because of a after her name who enjoyed delivering death
neurological difference. They seemed to be right, blows. Yes, I would decide, no one else.
as try as I might my brain wouldn’t work any
faster. It made me angry they were right, I raged I was acutely aware of how my body was
inside. Even the clinician who diagnosed me had giving me signals every day I had Asperger’s, but
the cheek to tell me it would take me longer than I always excused them away — it’s the shock, it’s
“normal” people to process all this information. I because I’m tired, this is why this isn’t making
hated her condescending tone; I hated her. sense to me right now.

But as hard as I was trying to force my brain Obsessional thinking is part of Asperger’s
to work and make sense of it all, it just wouldn’t. and I kept excusing away my obsession to find
Here was my Aspergic brain, if that’s what I had, out more, as being “natural considering the
slowly crunching away through the data when circumstances”. The fact that I couldn’t get this
12
an article (continued)
team of runaway horses to stop, was rationalised to be able to accept, easily, this is dyspraxia and
by the thought that anyone in this situation there’s nothing I can do about it.
would be doing the same thing. It turns out
that many with Asperger’s do exactly what I was I continued to live a double life, telling people
doing but apparently, it wouldn’t be common Asperger’s wasn’t a label, it was an explanation.
for neurotypicals to do it. The fact that I was so An explanation of why I was the way I was. Yet
obsessed as to even ignore the basics of washing, even as I said the words coming out of my mouth
dressing, feeding myself was constantly dismissed I didn’t believe them.
in favour of feeding my obsession. My obsession
monster was getting bigger by the day and as So much of the Asperger’s made sense — my
it grew, it needed more food to fuel it and as it desperate need to be away from the world. How
needed more, I worked harder and it got bigger I hated talking to people and them talking to
and the less I could stop. me. The clinician told me I had problems with
social relationships and social communication
The clinician told me I had dyspraxia, and I had to agree with her, and what others told
common with Asperger’s apparently. She said me too only added to the weighty evidence of
it would explain my clumsiness. I had always how I appeared in the world. But it didn’t make
been told off for being a clumsy child and, on acceptance of the diagnosis any nearer.
remembering these tellings off, felt a pang of
resentment and frustration at my parents for not I kept compiling the evidence, like a
understanding I had a neurological difference. researcher researching some grand mystery, some
A sense of enormous relief flowed through me long-forgotten case file, some unsolved crime. I
when I told my mother this and she apologised presented myself with a compelling case why I
straight away, she didn’t know, she said. I knew had Asperger’s but I saw the words and could see
and it was okay, I could leave that one alone. the patterns that applied to me but chose not to
accept and make Asperger’s a part of “me”.
I had no problem accepting the dyspraxia, in
fact I started to laugh when I noticed how many The high anxiety states I was experiencing
things I bump into in just one day, or how much daily were now leading me to panic attacks.
I trip or stumble or drop things. I’ve lived in this Great! Another problem to solve. I raced
house for twelve years and should know where through a book called Asperger’s and anxiety by
my door jambs begin and end, yet found myself Nick Dubin. It made sense to me; it was like a
chuckling as I walked into the same door jamb breath of fresh air. It said I had a neurological
twice in one day. “Ah ha, that explains it then,” difference. It told me that my brain had to work
I’d think, “I have dyspraxia.” twice as hard to process information as compared
to neurotypicals. This extra information
I usually get through two full sets of crockery processing the brain has to go through causes
in a year, berating myself for being clumsy. Now heightened states of anxiety. So if a real-life crisis
it made sense. I was forever watching the plates situation comes along, like the one I had found
slide out of my hand. It was particularly annoying myself in for the last five months with impending
if the plate happened to be holding my dinner redundancy, then my anxiety levels would
at the time and only last week I had to scoop up naturally go through the roof.
my jacket potato and coleslaw off the shag-pile
carpet. Slowly, more began to make sense and I
started to see how my behaviours and thought
One plate and one bowl lost their lives last patterns were along the autistic spectrum.
week. Forever consigned to the dustbin from
dyspraxic hands. It was a relief not to hear myself
calling me names for being stupid or clumsy but The final part will be published in July, Editor.
13
an article

Uncertain futures — adults living with autism

by Malcolm

I was invited to take part in a research project in articulate. In retrospect, I am so glad that I did
collaboration with the Institute of Neuroscience take part. Anything which informs the paucity
at Newcastle University early in 2016. of research so far to help adults with ASD, our
fears and anxieties and heightens awareness of
My experience of ASD is a personal one. I the condition itself, can only be beneficial to our
was diagnosed with Asperger syndrome at 52 children.
years of age. This was prompted by my youngest
daughter being diagnosed with ASD the previous Anecdotally, I remember more females
year. My role was to be a facilitator along with turning up than males. This surprised me, given
two colleagues who also had different experiences the supposed diagnostic ratio of 4:1 males to
of ASD but were neurotypical people. females with ASD. Women seemed to be more
open about sharing their worries. I wondered if it
The background to the research was based was that despite living with ASD, they socialised
upon the premise that very little research has in a different way and seemed more at ease
been devoted to autism in adulthood. Our study confiding in others than the male participants.
wanted to focus upon worries and fears for the
future to further inform this body of knowledge. Some of the results were not surprising,
however, I was heartened to learn that some
The structure of the groups was fairly simple. of the statistics relating to autistic people and
Two groups in Scotland and two in Newcastle- employment were not borne out by this cadre.
upon-Tyne. The former involved overnight stays. The figures we had split between 50% of
Typically, approximately twelve adults living with participants being unemployed and approximately
autism were invited to a venue for two hours 50% who were in work or had retired from
to give their personal account of anxieties and employment. The figure bandied about is 15% in
concerns for their future. The group also invited work.
parents and carers along to support their son,
daughter or charge. The format was kept simple, One of the other discussion points that
promoted discussion and allowed members of I could relate to was that of “minimisation”:
the group to leave if they were overwhelmed or “Being told that your autism “doesn’t count” or
distressed at any stage. isn’t severe enough”. In other words, “You don’t
look autistic so you can’t be” — it is awareness
Despite the fact that professionally I was which would prevent such crass remarks.
a retired registered nurse and also had served
with armed forces as a Reserve Forces Nursing Now this research was carried out a full six
officer, I felt quite anxious about taking part in years after the Autism Act 2009. It was also a
the project. Perhaps this was my own anxieties full year after a new statutory guidance by HM
coming to the fore, ruminating whether I would Government in 2015, requiring local authorities
be a help or a hindrance to the project. Could and the NHS to implement a six-point plan in
I actually do this? I had reservations, but went order to support adults in their areas living with
ahead because my daughter was 18 years old this ASD.
year and I wanted to hear the views of young
adults too, in order to clarify some of the issues It seems to me that not only public awareness
that my child may feel but might not actually needs to be heightened, but moreover the
14
an article (continued), a notice and a poem
plethora of professionals that
If sufficient material is sent in, the theme for July will be
we can expect to meet in our
fiction — why do you read fiction? Why don’t you read
adult lives need to be much more
fiction? What is the difference between a story and a novel?
informed and much more aware.
What’s the difference between legend and myth? If that’s not
Autism is a spectrum condition.
a popular choice of theme, how about hoarding, collecting
and other activities that some people try to stop us
Personally if I was writing a
doing? Again, feel free to take this idea to any related
school report, it would read thus
subject you want, or to a completely different subject — it’s
about the strategy: “Laudable aims
your magazine! Vote with your contributions: the more
and wants to be seen to be doing
submissions on a subject sent in (from different people), the
well. The reality is of course that it
more likely that that subject will be the theme. Writing on
really is no good employing ‘Blind
any subject is still welcome, as are ideas for new themes, and
Pugh’ to drive the strategy. He can
artwork. Perhaps you’ve been to an event: why not write
only imagine what autism looks like
about it? Remember, if you want to see different content in
and can’t actually see it. No autism
AU, the best way to change it is to send something in!
strategy without autistic adults . . .”.

I received my Asperger’s diagnosis in 2011 at the age of 46. During a recent stay in my local hospital’s
mental health ward, I wrote a very short piece about Asperger’s and me, shown below. I have shared the
piece with a few people so it makes sense to send you a copy.

Happy New Year,

David

Imagine needing order in a disorderly world.


Imagine creating order, and being laughed at for doing so.
Imagine needing precision in an imprecise world.
Imagine being precise, and being told it is often unnecessary.
Imagine needing structure in an unstructured world.
Imagine creating structure, only for people to tear it apart.
Imagine needing words to have their literal meaning.
Imagine taking words literally, only for people to consider you stupid.

Imagine order is innate, and you have to work out when order is not required.
Imagine precision is innate, and you have to work out when precision is not required.
Imagine structure is innate, and you have to work out when structure is not required.
Imagine taking words literally is innate, and you have to work out when the meaning is not literal.

Imagine becoming anxious when you see the “Random” button on your CD player.
Imagine becoming anxious because someone gives you £10 when they owe £9.60.
Imagine becoming anxious when you see fiction and non-fiction books mingled.
Imagine becoming anxious when you are told to wait ten minutes and it is eleven minutes and counting.

If you can imagine this, then you can begin to imagine my world.
Welcome to my Asperger’s world.
15
an article

My journey with George Orwell

by Philip

This story is about how the limits on his pursuit for truth. In the year 1999, I worked
extraordinary journalist, Incidentally, at the boarding in the Isle of Man for a private
political satirist, and social school I attended, pupils bank, but unfortunately
critic Eric Blair — popularly held regular “masturbation I had to resign my board
known as George Orwell contests” which was shocking appointment because the
(1903–1950) — influenced my to me as an innocent eleven- shareholders insisted upon
life as a positive role model and year-old boy. money laundering. When
personal hero. I lived in the Isle of Man,
The biography of George I wrote a book entitled The
I discovered George Orwell by Bernard Crick theory and practice of oligarchic
Orwell at school when the explains that Orwell’s friends manipulation and control —
author’s book Animal farm was and family ridiculed him for influenced by the forbidden
included in our syllabus for his literary ambitions, but with book mentioned in Orwell’s
English literature. Animal farm sheer dogged persistence, he 1984.
is a political allegory about succeeded against all odds. He
totalitarian rule of a farm by who laughs last, laughs longest! In 2003, I migrated to
pigs. Shortly afterwards, I Even today, many literary Northern Thailand because
read his books, 1984 and Down snobs are highly critical of I was unable to survive in
and out in Paris and London. Orwell’s writing style. England, despite being a
The latter book is essentially chartered accountant and
Orwell’s personal investigative I related to many of MBA. Occasionally, I travelled
journalism about life on the Orwell’s experiences, from to the Myanmar border to
edge of society in boarding being bullied and caned at a extend my Thai visa. I learnt
houses, known as “spikes”. British boarding school, to that in 1924, Orwell served as
being the poor boy (at school, a police officer for the Imperial
I perceive Orwell as an university and later in a top Police in Burma, but later he
individual with extreme international accountancy resigned to start his writing
integrity and passion for firm). Both of us support career. Two excellent books
writing. Orwell “walked his underdogs and victims of relating to Orwell’s time in
talk” and used his writing to injustice. Burma (Myanmar) are Burmese
make people more aware of days (by George Orwell) and
social injustice and hypocrisy I lived in London (on and Finding George Orwell in Burma
that gripped England at that off) from 1982 to 2003, and by Emma Larkin (investigative
time. He was such an open- during this period, I took journalism).
minded intellectual that the George Orwell “tour of
he called himself a “Tory Islington”. I visited one of In Mandalay, Orwell
anarchist”. the houses that Orwell rented developed a reputation for not
with his wife in 1944 at 27b fitting in. He was described
Orwell shared his intimate Canonbury Square, Islington. by his colleagues as “sallow-
experiences with us — on Coincidentally, I lived in faced, tall, thin, and gangling,
subjects ranging from bed- Islington and Hampstead, whose clothes, no matter
wetting to masturbation at both places where Orwell had how well cut, seemed to hang
school — and he placed no lived. on him”. In Emma Larkin’s
16
an article (continued) and a filler
book, Orwell is described as Asperger’s syndrome. Autism
“socially inept, preferring to specialist Professor Michael
read alone voraciously”. Fitzgerald says in his 2004
book that George Orwell
Orwell developed a keen fitted the criteria for autism
sense of the British class spectrum disorder, so Orwell
system during his school years. probably had Asperger’s
He was always perceived as syndrome. In Orwell’s
the poor boy in the class of autobiographical essay, Such,
rich kids from prestigious such were the joys (1947) there is
families, and his alienation much evidence of his social
was compounded by perpetual problems and resentment
ill-health, especially respiratory about the way he was treated at
problems, which prevented boarding school.
him from excelling in sports.
So, Orwell developed into Freedom, integrity, and
a social misfit with interests Image out of copyright individuality are the most
ranging from nature and important qualities in my
politics to black magic. an Aspie denier with a veneer life, and George Orwell
of normality. Some people are embodies these characteristics.
In November 2011, set free by a diagnosis — to Ultimately, the journey as an
I discovered that I have be who they really are. Some outsider with a passion for
Asperger’s syndrome after have a down-time to process identifying and expressing the
reading an article in my this change — and come to truth are concentrated in the
professional accountancy terms with it — as you are. Orwellian slogan, “The price
magazine, while I was You will soon work out what is of freedom is insecurity.”
living in Phnom Penh. This your best way forward — but
inconvenient realization caused living out as an Aspie as you Other influential Aspies
a massive crisis in my life, but are aware, is also a problem in my life include Albert
I am getting to understand as people will then ask you Einstein (for his essays about
myself much better now. questions about it and with capitalism), Nicole Kidman
AS being a communication (Eyes wide shut, directed by
My mentor wrote to me, “I problem you will struggle. Stanley Kubrick), David Byrne
think you now know and wish There is no right answer. Let (Talking Heads) and Stanley
you did not know you have AS. time do its work . . ..” Kubrick (A clockwork orange).
You have stopped continuing However, my favourite lifelong
in the old Phil way as you are Despite my identity crisis, influence and guide is George
not the old Phil. You are new I have become aware that Orwell (Eric Blair), who was
Asperger’s Phil and have not many of my friends, heroes, living way ahead of his time. I
lived as an Aspie — only as and favourite artists also have love the man!

Bearing grudges, having regrets or feeling sorry for oneself for traumas of the past is a total waste of
precious energy, just as it is to worry or to have fears for the future. Yesterday is history, tomorrow is
mystery, today is a gift — a present of the present. Your energy used as a present in the present — in the
now — is totally potent and can manifest truly magical results!

from Tracey
17
an article

Realise your talents and pursue your dreams

by Melissa A Joy

Have you ever dreamed of years, and at the age of 30 I first book is available for sale
achieving something, but were wasn’t prepared to accept that. worldwide.
too daunted by the challenge I’d worked so hard for so many
or couldn’t focus and ended up years on my dream of being a So many of us with
waving the white flag of defeat? published author that I couldn’t Asperger syndrome or autism
Whether your talents are in the say no to such an opportunity. have strong desires to succeed,
creative arts or even in science I saw it as a stepping stone, a but end up throwing in
or engineering, you should means to an end that I was so the towel when we become
never lose sight of them. desperate to accomplish. frustrated with our efforts or
daunted by stepping out into
I was diagnosed with Self-publishing doesn’t suit the unknown. I have suffered
Asperger syndrome at the everyone (and to be honest with anxiety and depression
age of 26, and after much if traditional publishing was for many years now (and I’m
toiling over the years, I’ve easier to get into I’d have still not out of the woods yet),
accomplished my dream of taken that path instead) but but after having my book
being a published fantasy what it does offer is a chance published and achieving a
author. It has been my dream to make a name for yourself. bachelor’s degree, in English
since roughly the age of 13: Admittedly there are small literature and creative writing,
I believed there was nothing presses out there who aren’t all I feel more confident than I
else out there for me, that they claim to be, but there are did. I believe we are all capable
was what I wanted the most a lot of good ones out there of great things if we utilise
in life. It took me until 2016 as well: you just need to do and develop our talents, and it
to finally get my debut novel your research to unearth all doesn’t matter how many small
— Keys of the origin — out into those that throw up red flags steps we have to take in order
the world, but it was a rare and discover the ones doing to get there. Don’t give up on
stroke of luck that got me honest business. In most yourself.
out there sooner rather than cases it can be a bit costly, but
later. I was discovered by it all depends on how much
someone who had started a effort you’re willing to put
business for writers’ services into achieving such a dream. I
and publishing, and as I made good use of social media
needed some experience in with a basic website displaying
other fields of literary expertise excerpts of my writing, and it
(with a view to becoming a was in 2013 that my current
proofreader or editor), I joined editor and publisher found
the company as a volunteer. me on Twitter, and he liked
I was then offered a chance what he saw. That’s how I got
to have my book published, involved with his company,
because if I were only to follow Blackheath Dawn Writers.
the traditional publishing route Your own dream may not even
by sending letters to agents be in writing and publishing,
and publishers, I could be but I spent seventeen years
receiving rejections for many pursuing mine, and now my
18
stuff you might like to know about AU

The rules of Asperger United

(contact information for AU is on page 2 and again on page 20)

1) Asperger United is funded by the NAS and 9) You do not have to be a member of the NAS
readers’ donations, and is independent of the to subscribe to Asperger United.
NAS. Although it is called “Asperger United”
it aims to be for the whole of the (reading) 10) The current edition of Asperger United is
autism spectrum. That is, the concerns and available at
joys of any autistic subscriber can be printed, www.autism.org.uk/aspergerunited
not just Asperger’s. You need to scroll down to the middle of the
page, where there is a link to the PDF.
2) Asperger United is free and is quarterly,
published in January, April, July and October. 11) You can sign up for an email notifying you
If you do not receive a copy when you expect whenever a new edition of Asperger United is
to, please contact AU. posted on the webpage above. Email
asp.utd@nas.org.uk
3) Pieces that appear in Asperger United are asking for the notification by email and please
credited using the author’s first name only, include your full name, postcode and let us
unless the author requests something know whether you want the paper edition too.
different. This is done to protect your privacy.
12) If you want to unsubscribe from the paper
4) Asperger United administers the copyright of version, inform Asperger United and include
everything that appears and it does this on your postal address. Or to unsubscribe from
behalf of the authors. the email notification, include your email
5) Asperger United does not use your contact address.
details for anything other than administering 13) If you want to resubscribe (or subscribe for
AU. Your details are not passed on to NAS the first time) inform Asperger United and
Marketing, NAS Fundraising or any other include your postal address (for the paper
organisation without your written permission. version) or email address (for the email
Please consider getting involved with the NAS notification).
campaigns and events.
14) Book reviews are the most popular thing in
6) If you move house, please inform Asperger Asperger United, please consider submitting
United and include your old address as well as one. They can be about any book, not just
your new address. books about autism. Also, they do not have to
7) Even if you’ve paid for the Royal Mail be short (the Goth keeps most of his reviews
forwarding service (or another forwarding short to leave more space for other writers).
service if you live outside Great Britain and If you do not want your review to appear in
Northern Ireland), you still need to inform other NAS publicity about that book, please
Asperger United that you have moved address. make this clear.
8) If you phone and leave a message on the 15) Although each issue is themed, submissions
machine, please speak slowly and clearly and spell on any subject are welcome. Only some of the
uncommon words, as the line isn’t very clear. letters and articles in each issue will follow
Please give any phone number you leave twice the theme. All submissions may be edited,
for the same reason. Remember to give your especially for privacy, libel, and for fitting the
postal address so that we can find your record. space available.
19
Asperger United

Autscape 2017: An autistic conference


King’s Park Conference Centre, Northampton

Tuesday, 8 August – Friday, 11 August 2017

An annual residential conference and retreat • Full board – three meals a day plus tea
organised by and for autistic people. and coffee breaks – included in the price
• Travel to and from venue arranged from
This year’s theme is Autism in context.
Northampton train station (for an extra
fee)
What we offer:
Registration will take place via the website
• An autistic-friendly environment
and details will be posted there.
• To meet other autistics with or without
a diagnosis, including those with Further information regarding the
Asperger’s conference, registration and attendance fees is on
our website:
• Non-autistics are equally welcome
http://www.autscape.org
• Workshops and presentations
• Autistic-friendly leisure activities Email enquiries: info@autscape.org
including a sensory room, Sparklies in
the dark, trampolining, crafts and retro Postal enquiries:
computer games
Autscape
• An accessible residential conference centre 9 Daisy Lane
Downham Market
• Sports facilities close by
PE38 9ES
• Day time childcare included United Kingdom

Asperger United, c/o The National Autistic Society, 393 City Road, London EC1V 1NG
Telephone: 0808 800 1050 (free from most landlines) or
Telephone: 020 7923 5779 (geographical charges apply)
Email: asp.utd@nas.org.uk
Website: www.autism.org.uk/aspergerunited

Except where stated, all material © The National Autistic Society 2017

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