Asperger

Produced by and for autistic people

United
Edition 92 October 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 edition 92 is free. Future those who have held the position. These are
printed editions will be on paid subscription. Richard Exley, David Wright, Martin Coppola,
To subscribe you, we need your postal address. Ian Reynolds, John Joyce and the current
Please see the enclosed subscription form for editor, the Goth (who does not wear black).
details. Organisations requiring multiple copies
and anyone who doesn’t have a subscription form: Pamela Yates provided support and advice
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: [email protected] All we need is your email address and we will

add you to the email notification list.
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 6 November 2017

2
 editorial
Welcome to the October edition of Asperger change at the bottom of page 18. Instructions
United. for subscription are on the subscription form that
is included with this magazine. Extra forms are
Apart from the hundreds and hundreds of available by contacting me or the NAS. I hope
survey forms, this was a quiet postbag — you this new regime will be a success.
clearly put your energy into the survey.
So, due to the quiet postbag, as well as
More than 10% of you returned the survey, publishing most of the letters and articles I
compared to the last printed survey in 2007, received this quarter, I’ve gone back through
when less than 0.5% were returned. This shows the pending folder and picked out several pieces
how strongly you felt about the changes. The I’ve been wanting to publish for up to ten years.
survey report is on page 4, and on page 5 is a Everything that’s suitable for publication remains
notice from the National Autistic Society about in the pending folder until it appears. I hope that
the changes that are happening to the magazine. the authors are pleasantly surprised to see their
efforts finally in print.
As well as trying to run a paid version of the
magazine, which you will have to subscribe to, As ever, I shall look forward to the postbag,
we are altering the terms and conditions, rule
5 on page 19 — please see the notice about the the Editor

the survey edition — suggestion for next issue on page 11

Contents

Tree in oils. . . . . . . . . . . . . . . . . . . . . . . . . . . . cover What not to say to an autistic person . . . . . . . . 12-13

art by Tammy article by Lydia

2017 AU survey analysis . . . . . . . . . . . . . . . . . . . . 4 Letter about spinning thoughts . . . . . . . . . . . . 13

feature by Holly Judge of the NAS Research, from Laurie
Monitoring and Evaluation Department
Last of the rare-book cataloguers . . . . . . . . . . . 14-15
AU developments . . . . . . . . . . . . . . . . . . . . . . . . . . 5 article by James Christie
feature by Mark Lever, CEO of the NAS
Sexuality – article by Christopher . . . . . . . . 16-17
The days before Asperger syndrome . . . . . . . . . . . . . . 6
letter and article by Elkie Letter about late diagnosis . . . . . . . . . . . . . . . . 18
from Graham
Pen pals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7-8
Change to rule 5 – notice by the Goth . . . . . . 18
Letters to the Editor . . . . . . . . . . . . . . . . . . 9-11
one about relationships from Nathan, The rules of Asperger United . . . . . . . . . . . . . . . 19
one about sensory differences from Ian,
one about themes from Michelle, and Group notice . . . . . . . . . . . . . . . . . . . back cover
three about Asperger United from Connect Ealing – a new social group
Ruth, Susan and Selina by Dan Mayfield
3
 double feature

2017 AU survey analysis

by Holly Judge of the National Autistic Society

As a readership no one can doubt we have very and support, local services and events, puzzles
strong opinions on most issues and the responses and competitions, hobbies and special interests
from our 2017 Asperger United (AU) readers’ and latest autism research findings.
survey are no exception!
Your response to AU going on line and
Who responded? Out of the 9,700 paper print copies no longer being distributed free
surveys sent out in July we collected 1,042 of charge: now, for the moment of truth . . .
responses in total (887 on paper and 155 online).
This means that around one in ten of the 53% of respondents said they would read an
readership responded. online version, and a further 25% would have the
capacity to print off copies. 22% of respondents
From this sample, 66% of readers identify as selected that they would not read an online version
autistic, one in ten as professionals and the rest as and have no option for printing a copy.
parents. 28% of parents and guardians of autistic
children identified as autistic themselves, and As well as overall numbers showing that
38% of professionals identified as autistic. the majority of readers could access the online
magazine, some open-ended comments expressed
Your impressions and the impact of AU: understanding or support for this change, for
reflected both in the “Why do you read AU?” example: “I have enjoyed this magazine but
and open-ended-feedback questions, most of the understand that costs have forced it on line”.
autistic readership feel that AU makes them “feel
part of a community” and “less lonely”. However, open-ended comments expressing
regret, difficulties or opposition outnumbered
Over 70% of respondents agree that AU is accepting comments by six to one, for instance:
interesting and informative with half sharing
their copy with at least one other person (with “I have difficulty processing information like
some copies shared with more than five people, this”, and “I feel sorry for those who will not be
increasing the readership by at least 120%!). able to receive AU for various reasons”.

Many parents reflect that AU gives them Reasons for not reading online included: not
understanding, hope and relief that there are being able to look at online pages for sensory
others to connect with their children and, for reasons, not knowing how to access online pages,
professionals, perspective. no access to a computer, tablet or smartphone
and less likely to share copies with others.
Your favourite content: 80% of respondents
said features and articles are among their favourite A universal shift to an online format poses a
content, with letters and stories above 55%. risk of us losing 22% of our existing readership.
However, half of this group said they would be
Autistic readers are slightly more likely to willing or able to pay for a subscription. So, in
select pen pals and artwork as favourites. order to provide print copies of the magazine
for these readers and to other people who prefer
Most readers prefer items to be a page or less, that format, the National Autistic Society have
with ideas for future content ranging from: advice established a subscription system.
4
 double feature (continued)

Asperger United developments — subscribing to

print copies and developing the online magazine

by Mark Lever, CEO of the National Autistic Society

In last month’s Asperger United I explained, on You can find out more about the subscription
the back cover, that the charity was planning to system on the subscription form enclosed with
develop the online version of the magazine and this issue of the magazine. If no subscription
to stop distributing free paper copies. form is with your magazine, or if you have lost it,
please ask for one. You can contact the magazine
We wanted to test the impact of these planned in the usual ways: e-mail, post, phone — contact
changes before shaping a definitive proposal, and details are on page 2.
over a thousand of you completed the readers’
survey. Thank you. We will also continue with the development
of an online version of the magazine that
Holly’s article, opposite, gives you more details maintains the same content under the Goth as
about the results of the survey. In summary, editor. The online magazine will be more than a
22% of respondants said they could not read the PDF on the website, and will allow Asperger United
online magazine, or print pages and read them. to benefit from the advantages of going digital.
These include the magazine being available to
Establishing an online magazine is a positive more people without incurring additional costs
development in itself, but the needs of those and many more back issues and old articles will
unable to access or read material online have to be available. Also, we’ll be able to link from
be addressed. At the same time, the charity needs articles to useful related content. You will be able
to meet the very real financial challenge relating to read Asperger United on your phone and tablet,
to the magazine’s print and distribution costs. and share and search articles.

Therefore the charity will continue to There will be an easy-to-print version of the
produce paper copies of the magazine through a magazine on line.
subscription system linked to your ability to pay:
The subscription system will run for an initial
• A “donation” level for professional and six-month trial period, to see how well it works. The
overseas subscribers and for people choosing subscription system trial and the development
to pay a supplement — by subscribing at this of the online version of the magazine will be
level you will allow us to print and distribute undertaken in consultation with autistic members
copies of Asperger United at a reduced rate to of staff and of the charity’s National Forum and
one person (or more) who cannot afford the with the two hundred respondents to our survey
standard rate. You will also fund the free who were interested in providing feedback about
copies we distribute at events. proposed developments to the magazine.

• A “standard” rate for people who can afford We realise that these may be difficult changes
to pay this rate, which covers all the costs of for some of you, but I can assure you that the
producing and distributing the magazine. National Autistic Society is committed to this
unique and valued publication — written and
• A “reduced” rate for people who cannot produced by and for autistic people — and to
afford the standard rate. ensuring it is made as widely available as possible.
5
 a letter and an article
Dear Editor, Instead of the many personal (problem)
stories, I would like to see more general, research-
thank you for Asperger United. To be honest, based articles in the magazine, but perhaps I’m in
the articles about Dr Who, Tardis and Daleks the minority here.
made me feel more alienated from the readership
than ever. As I do not watch television or read For an edition on late diagnosis, you might
science-fiction books, but prefer to spend as consider including the following article,
much time as possible in the natural world, I have
no clue what these people are talking about. Elkie

The days before Asperger syndrome

by Elkie

During the 1970s and 80s, when I went to school, underlying difference to the people around me.
autism was still poorly understood and usually Mentioning this to my GP, who monitored the
referred to non-verbal and very difficult-to- medication I was taking to control my mental
manage children. The term Asperger syndrome health, I was referred to a psychiatrist who in the
had yet to be coined, though the teachers in our following three years took me through a variety
special class for gifted children must have had of assessments, as well as conducting general
some inkling of Hans Asperger’s work, since psychotherapy and referring me to a creative
their approach to education mirrored many of his socialising group led by the occupational therapist
recommendations. for adults with Asperger syndrome. So, in a
way, my diagnosis of Asperger syndrome was
Despite this, I left school at the age of 15 to embedded in therapy and came as a relief rather
train as a gardener and later work on organic than something to be wrestled with or grieved.
farms, as it was a safer environment to cope
with the increasing pressure of my mental health Meanwhile, I’ve had my autobiography
problems (OCD, Tourette’s, psychotic episodes (Discovering who I am — growing up in the sensory
. . .). At the age of 24 (still in the 1980s) I spent world of Asperger syndrome) published, had the
six months in a psychiatric hospital in very opportunity of becoming one of the founders
intense psychotherapy. However, I never felt of the Autism Rights Group Highland (ARGH),
properly understood and much of the advice and sharing my Insight into autism workshop with
intervention didn’t really work for me. It did hundreds of staff in education in the region,
enable me, though, to continue my education and holding lectures on autism topics and being
eventually graduate from university and become a involved in setting up the autism module at
teacher for children with special needs. Aberdeen University. All this would not have
been possible without the diagnosis of Asperger
Early on in my career I was working with a syndrome. So I am very grateful for it and for
boy who had a diagnosis of Asperger syndrome the way my colleagues, neighbours, fellow church
and his ways of perceiving the world and acting members and many professionals are accepting
in it was almost a mirror image of myself at that me as I am and respect my unique experience and
age. I began investigating the newly formed understanding of autism and Asperger syndrome.
term Asperger syndrome, and the more I read, This is a far cry from the life I lived in my teens
the surer I became that this explained my and early twenties.
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 Asperger United. You can use the Royal
Pen pal number 252 Mail or email. The next pen-pal number will be
given to your advert when it arrives.
Dear AU readers,
> Please note that AU does not print dating adverts,
my name is Alan. I’m a 37-year-old gay as it is unable to provide suitable support.
lad with autism. I thought that I’d start this
pen-pal letter to let people similar to me in > Those under the age of sixteen must have parental
Northampton, as well as all AU readers, get permission before placing a pen-pal advertisement
to know me better. I like to socialise with in Asperger United.
family and friends and also I like to make new
friends with autism. I like doing things like
> If you get no replies, please don’t take this personally.
bowling, cinema, going to pubs and social
events, like Gay Pride, Autism Pride, animal
welfare campaigning events as well. I’ve been
How to reply to pen pals
bullied on Facebook for being autistic and gay; > Please remember to let us know the name and
I have blocked Facebook trolls who are friends number of the person whom your letter is for. (All
with the residents of a local animal sanctuary, pen pals are numbered by the editor, not the person
due to them supporting this homophobia who sends in the advert.)
and hatred towards us vulnerable people with
autism. It should be shut down in my view,
> Please remember to put your address on your letter.
it’s not fit for purpose. I advise all AU readers > To contact a pen pal, please send your letter to
to visit Animals in Need Northamptonshire Asperger United, c/o The National Autistic Society,
and campaign. I would also like to express my 393 City Road, London, EC1V 1NG, or email
view that anyone who has capacity with autism [email protected]
who has spent many years detained under the
Mental Health Act 1983 should not be detained
> We will pass your letter on to the person you wish
to contact. However, we cannot guarantee the
unnecessarily as long as they don’t pose a risk person will reply as that is entirely their decision.
to themselves or others. I think the MHA
1983 needs to be scrapped and replaced with > Please note that all pen-pal letters sent via Asperger
something better and fairer. I do like to United are opened before being passed on.
sometimes read Marvel, DC Comics. I
believe there should be a world of animal **Important notice —
­ please read**
rights, human rights — including LGBT
rights — justice, democracy and peace, not Asperger United is happy to publish pen-pal
just here in Britain but all over the planet! advertisements but we must stress that we are not
I’m seeking pen pals from Northampton, a pen-pal or introduction organisation. We do not
East Midlands, London, Bedfordshire with match people up and we cannot monitor letters
similar interests and views as me, please. (other than the first letter, that is sent via us) so
please be cautious when releasing personal details in
Thanks, your letters. The National Autistic Society / Asperger
United cannot intervene or be held responsible for
Alan any ensuing correspondence between letter-writers.
7
 more pen pals
Eight pen-pal adverts have been Pen pal number 253 I live in the States, and I
held over for publication in the am proud to be a soldier of my
next two issues, Editor. Hello, I’m Cassidy. I am 23. Salvation Army Corps!
I love cats, and the Muppets,
especially Dr Phil van Neuter — I totally look forward to
Pen pal number 254 the green scientist dude. hearing from you.

I am a single female,
I have a degree and various Pen pal number 255 Pen pal number 257
diplomas and certificates.
I love animals, my cat died Hi my name’s Kelly and I I am Scott and am now aged 57
aged almost 22 human am looking for a penfriend and would like to expand my pen
years. I look after the both male and female. I friends, any age bracket will do.
wild animals that visit the would really like a penfriend
garden; I live near a park with Asperger’s syndrome. My interests are horse riding,
— foxes, badgers, squirrels, I have Asperger’s syndrome going for walks, visiting museums
and birds. Hypersensitivity and would really like and art galleries, current affairs and
is one major problem someone with the same thing. world history.
regarding my diagnosis. I would like more friends. I
I enjoy cooking (mainly do have interests: I like going I am not interested in paganism
Italian/French/American). to the gym, I like listening to or religion.
I also bake — my favourite music. I also like the Internet,
is chocolate cake; I like the socialising and I am thinking I also like to try out world
American method. I enjoy of taking up knitting. I would food and am interested in different
watching television (but like an email penfriend. I types of drink, whether herbal or
I hate adverts especially hope to hear back from you. alcoholic.
after seeing it once — like
brainwashing) sci-fi (Star I am interested in the earliest
Wars trilogy), period dramas, bank notes and coins, especially
Disney, science, history, Pen pal number 256 around Greek and Roman times.
politics and some art. My
true affinity is for animals. I I am Tilly. I am 27 and I love all types of world food
play chess, love reading non- live in London; I have many and drink and enjoy a good curry,
fiction, and fiction/faction interests, including languages, chilli con carne and goulash, not to
for anything pre-historical travelling, musical instruments mention German and French food
in England and history for and sports such as badminton, and drink.
period 1066–1300s. Am ice skating and tennis.
bilingual and the only child I will eat any European or world
on the autistic spectrum, I like museums and walks food from whichever country I’m
I am also a Christian. I to local parks and cafés. in at the time; I also like vegetarian
need to believe in someone food and love a good nut roast or
greater than myself. I am I would like to get to know veg curry, or even veg goulash!
not an ageist so will be people with similar interests
delighted to hear from and aged between 24 and 35 I am a floating voter so my
anyone, anywhere in the UK who also live in the UK. party colour changes as often as
with Asperger’s syndrome I change my football shirts, so I
or high-functioning. Thank I have a quirky sense of may require someone very down-
you for reading, it will be humour and style and look to-Earth who does not mind my
nice to hear from you. JC forward to making new friends. changes to team or party!
8
 two letters to the Editor
To AU magazine, Sherlock on our screens has also led to being able
to explain my social insecurities through the
I am sending this email, firstly, just to say way the lead character has social problems: for
thank you for the great articles in your magazine. example, being able to explain my one-track mind
through the way Sherlock acts towards subjects
Secondly, I see a bit about you maybe doing a that he is interested in.
article on fandom and wanted to add my view.
It’s amazing that through a TV show we now
I’m 32 with AS. I just wanted to say my point arrange days out to go to comic-book shops and
of view over my obsessions: Doctor who?, Star trek, Baker Street and so on.
comic books, Sherlock and wrestling.
What I am trying to say is, I think parents
Growing up I absorbed so much information and carers of people with autism don’t realise
about most of these subjects, and I believe now as that our fandoms and obsessions are a gateway to
I did then that it was for a purpose. other and more meaningful conversations.

Finding it very hard to relate to people Take time to talk to us about our loves: mine
and get involved in social situations, I used my has not only led to a better relationship with my
knowledge of these subjects to kinda integrate, daughter but to a business in comic books.
as people enjoy these shows as much as I do. I
found that having a vast knowledge of these People think our obsessions are strange but
things is a way to relate to my friends and family. I’ve not met any type of person who I have said,
“Sit down and watch this episode of Doctor who?”
Being so into these means I had something in to and isn’t now obsessed themselves.
common with so many others, or at least enough
knowledge to hold a one-way conversation. Nathan

I believe you need to do an article on this as

not so much for people with AS but for carers
and parents so they can understand it is normal I am an adult male with AS and was diagnosed
and take the time to have a conversation about aged 12. I have noticed from autism websites that
their loved one’s chosen thing. many people have numerous problems attributed
to AS, particularly sensory issues. I do not have
A good example of this is: I have found it such problems and this makes me feel in the
hard, as my daughter got older, to relate to her minority and marginalized. I do not like to feel
as being a father who finds it hard to express my like this, as though I cannot connect with anyone.
opinions and feelings.
I would really like to know if there are other
When she got to about 12 I put on a wrestling people out there without sensory problems and
DVD and she was hooked. Having that there other needs, which seems to me to distort the
as a conversation starter has improved our condition of AS. I am looking forward to a
relationship no end. response or two.

Through these chats about wrestling I have Ian

found she also loves Doctor who? and Sherlock: a
proper fangirl. I hope we get lots of replies to this letter. My experience
is that I’ve never met an autistic person without sensory
We now take time to chat daily about the differences, but I’ve met many who didn’t realise that their
shows we both love and the arrival of the new sensory experiences were not the norm, Editor.
9
 letters to the Editor
Dear AU, Hi Goth,

in the last edition (91) Wendy I got my copy of AU yesterday and thought I’d
mentioned some themes. I can relate to respond to some of your ideas for changes. I think it
the few mentioned, like the one: How to get may be important to have a dialogue in AU about it
out of the big black hole of gloom and doom and before making big changes because there may be issues
Communications tips. some people with less of a wide disability awareness will
be unaware of.
Sometimes being different comes with
its ups and downs. I always find the downs So regards the cover, I don’t really mind what you
being quite depressing and grey-cloud day. do, though perhaps having a colour front page would be
But the ups are much more interesting. good. There are environmental implications to using a
For example, when communicating with lot of colour in a publication.
someone of a different brain (non-Aspie)
I always find myself either drifting off or My main comments are about the issues dyslexics
not quite fully understanding. Sometimes may have. First I think it’s very important to say
people ask “Hey, did you get that?” I individual dyslexics have very different issues. Changing
mostly say “Yes” because explaining what the font may help some but make it worse for others.
I didn’t get and what they were explaining The same goes for coloured backgrounds or coloured
means more explaining in an Aspie-non- type. I suspect that the best way to make AU more
Aspie way. Also, as for slipping into the accessible to those with colour issues is to make available
gloom and doom of negativity I always information about Irlen testing for coloured filters, and
find early warning signs are good, but not colorimeter testing for coloured specs, because then
always noticeable straight away. I always each person can make their own adaptations and nearly
put myself down first and then start everyone will be able to find a way to make AU readable
missing social events and then everything if it is published as black and white. Once you start
else after that is like rain, rain, all day changing the colours of the publication and the type
and night. I also like to help out and get you will find that most people with colour issues will
involved when I’m feeling so hyper and not be able to access some part of the publication — for
positive. I tend to take on loads and loads example, I can’t bear a yellow or red background but
and my head has so many ideas that I then with black on white I can always use a purple Irlen filter.
kind-of overload and burn out. I find the NAS membership magazine very hard to read
because of the variety of colours.
So going back to the themes
mentioned by Wendy in edition 91, I think I’d hate to see less info in AU if making space
a lot of them are really relatable to Aspies around the text will mean less text on a page. I’d like
and possibly non-Aspies. I also wonder if to see more pages and more frequent issues of the
in the future there may be a lot of Aspies newsletter — if indeed you get 300 or so submissions for
taking over the big-name jobs. Look at each issue then clearly there is a need for this.
Albert Einstein = genius.
I hope this is useful.
Also I would just like to apologise
for my grammar and probably tonnes of Thanks,
mistakes.
Ruth
Michelle
This letter is from 2009, when there was no space to print it, but
Thank you. Regarding mistakes, no more than I wanted to show that change has been ongoing, and the feelings
anybody else, Editor. expressed in this letter are still representative, Editor.
10
 two more letters to the Editor and a notice
Dear Goth, will miss out and not have Dear Editor,
access to this valuable
in response to Asperger resource. putting Asperger United on the
United reader survey: Internet and making the magazine
As someone who has more costly will really affect me.
I find cutting the recently had a late diagnosis Because I don’t use a computer or the
funding for the magazine at 60 — but I am younger Internet because it makes me stressed
would be a huge loss not than my years — it is all using it. And I think Asperger United
only for me but for many very new to me. I felt the should be free of charge still to non-
others who cannot access magazine helped me to Internet readers, because some people
the Internet because of relate to others like myself, might not be able to afford to pay
disabilities, including that and possibly making any money. Also if this change does
of light sensitivity, and contact with others. happen making charges to Asperger
difficulty looking at the United and putting Asperger United on
screen. Maybe a small amount the Internet: will non-Internet users
could be printed to certain still be able to write and how if people
In some cases people people who cannot access can’t afford the prices?
with the condition also the Internet. Or a copy
have learning difficulties, sent to the local Asperger From
and mental-health issues, group so people can read
anxiety, which makes the there. Selina
Internet not accessible for
everyone and having a copy I do not understand Everyone will still be able to write and send
of the magazine in booklet why cuts are always made paper letters to me, and AU is already on
format to make the most of where autistic and mental- line. The main change is the end of the free
the information provided health issues are concerned paper copy. The free copy is being replaced by
in my own time and space. and we are always being a trial for a paid copy. The secondary change
penalised instead of being is the expansion of what is available on line.
I would be grateful helped.
if you could look into For the foreseeable future, both a PDF
funding from other I do hope you can of the paper copy (as usual) and a (new)
sources so the magazine find a way of funding hyperlinked digital version will be on the
continues to be available to and printing this great NAS website. The new digital version will
vulnerable autistic people. magazine. have all the advantages of digital: sharing,
A lot of people, including linking and searching, as described on page 5,
myself, with disabilities Susan Editor.

The changes to Asperger United will continue other people’s understanding of autism. Vote
to be discussed in the next issue. This subject with your contributions: the more submissions
includes the effects of the changes on you, any on a subject sent in (from different people) the
questions you have about the changes, and more likely that that subject will be the theme.
any other points you want to raise. (If you Writing on any subject is still welcome (though
haven’t read about the changes yet, please see I have a feeling this one will produce lots of
my editorial and the articles on pages 4 and letters) as are ideas for new themes, and artwork.
5.) However, there may be a different theme: Remember, if you want to see different content
if sufficient material is sent in, the theme for in AU, the best way to change it is to send
January will be things people say to us and something in!
11
 an article

What not to say to an autistic person

by Lydia

Just over a year ago, I was diagnosed with sound is too loud, I hear a roaring in my brain,
Asperger’s syndrome; to be honest, it really was blocking me from thinking clearly. Others may
not a surprise. What was notable, however, was have meltdowns. You may also be stimming.
the amount of seemingly innocent, but actually And that doesn’t help. Noise doesn’t have to be
quite hurtful, comments, on revealing my aimed. I’ll block out the noise from the road with
condition. People seemed to find me scary, wary headphones, along with rock music. I rock like
of even daring to talk to me. Hence, came a list no one is watching.
of comments not to say to an autistic person:
“Stop stimming.”
“You don’t look autistic . . .”
Um, no. No. It’s a reflex, almost, as if to comfort.
What does that even look like? That’s so insensitive,
because one thing that’s really tough is how we “You’re just pretending, for attention.”
appear to be neurotypical. It’s also borderline silly.
Please don’t ever say that to me. Ever. If my doctor says I’m autistic, then I wouldn’t
be pretending. It’s a recognised condition, as is
“Oh, that was caused by the MMR the autism spectrum. We are not pretending. All
vaccine . . .” we need, instead, is tolerance and patience, the
same as everyone else, generally. We don’t want
Newsflash: no, it’s not. Also: why are you more excessive attention.
afraid of us, on the basis of a cognitive disability,
rather than an epidemic disease, that is far more “You’re really clever . . .”
a risk to us all? Ebola, Zika. Also: autism offers
so many skills to utilise. Why would we want to Clever is subjective to the individual, surely?
see evidence of a conspiracy? (We wouldn’t.) It’s For example: I suck at maths, but am far better
also irrelevant to somebody when they’ve been at anything to do with words. That’s not being
diagnosed. clever, it’s specialising in what your brain is most
attracted to. That’s my theory, anyway. I was
“Can’t you just reason your way out of it?” bored of people saying that as a fact. I’m not like
Albert Einstein, or Bill Gates.
No. Just no. Attached to autism is anxiety: as a
tied-up disorder, or just as itself, it’s impossible “Why do you hate people?”
to reason with it. Call it a voice, a person, that’s
convinced it’s always right. You can’t reason. It That’s usually asked when I hide away in
affects morale. And logic doesn’t always govern the library. I don’t hate people. But the
everything. Though that’s what we’re usually sound surrounding the collective of people
known for. is overwhelming, and is for anyone on the
spectrum. I don’t hate people. I just need time
“That noise isn’t aimed at you.” away, due to my senses being fused.

So? The best way I can describe it is having “Anxiety is a myth, as is autism.”
non-stop surround sound: it also can’t always
be filtered fully enough. I’m aspergic, and if Really? I think you’ll find they both aren’t.
12
 an article (continued) and a letter
“I do try and understand . . .” Asperger’s and autism may be an ostensibly
controversial disorder, but it really doesn’t have
To put it bluntly: you won’t ever do, unless Freaky to mean for you to be insensitive. There are so
Friday transpires, and you end up in an autistic many skills, enough to be utilised for the better.
body. All that’s needed is tolerance and patience, Obviously, the list isn’t definitive, and you can
not a pretence. add anything else.

“Just because you’re aspergic, doesn’t I will happily print more things that people say which are
mean you have a good memory.” unhelpful, unthinking, or just silly, as I imagine this is a
rich vein. The level of understanding of autism is very poor
A personal characteristic is a good memory, but everywhere you look.
recalling factual information is a hallmark of the
condition. To deny anything as factual as this My personal favourite is when people immediately start
is almost absurd. It’s an asset academically, and looking scared of you when they find out you’re autistic,
something otherwise incredibly useful. Editor.

Do people have spinning thoughts about Macclesfield hosted Manchester City at league
things which don’t matter? football.

You know they don’t matter, although you At a tangent, Middlesbrough and Fulham
want or need to check Barnet were or were not a were relegated from the 1986 second division,
league side twice, not one spell. later they were European finalists.

You know it doesn’t matter you read a I could continue, however, does anyone else
supporter attended six hundred consecutive experience similar spinning thoughts about
Cheltenham fixtures, although you want to email football or their special interest or obsession?
people about this.
How do they cope?
You know it doesn’t matter you recall
Newcastle could’ve hosted Barnet, if Newcastle I can live without checking whether Barnet
were relegated, from what was Division Two, were relegated twice as a league side.
1992, as Barnet were promoted, 1993. Barnet
were in the division that Newcastle were nearly However as you can see I have spinning
relegated to, 1992. thoughts about football.

These things are interesting, as is Reading hosting Maybe I can write and someone somewhere
Barnet, 1993, Reading in the premier division, 2006. someday could pay me, as I write at Studley’s
Programme most home programmes.
My mind is reminded, Barnet are one of a
few teams who were non-league, later a promoted If someone paid me however little this would
football league side: Wycombe, Yeovil are others. mean a positive about this writing.
Doncaster, Colchester are others who were
non-league, later promoted to be league sides. I know this is a dream.
However, they were traditional league sides prior
to their relegation from the football league. As I read at a bus-stop, “Life without a dream
is a broken-winged bird that can not fly”.
I forgot Macclesfield were non-league, later a
promoted football league side. Laurie
13
 an article

Last of the rare-book cataloguers

by James Christie

Only a few books to go and then so will I. It’s I spent three years living, breathing and
been a long journey to a virtual chapel complete stacking books in a library like a time capsule
with stained-glass windows, weeding and from Victorian days . . ..
shelving rare books in a reading room not twenty
miles from the special collection where I first Time and again, a novel by Jack Finney, defined
learnt the library trade nearly twenty-five years ago. the delicious possibility that:

Aspergers can be natural cataloguers but “. . . it may be possible this summer . . . for
there are few left today, and while I’ve come to a a man to walk out of that unchanged apartment
dignified end, I leave a failing trade in disarray. and into that other summer.”
Between 2010 and 2016 the number of UK
libraries fell from 4,290 to 3,765, and 7,933 paid Unlike physical time travel via TARDIS,
staff were slaughtered while volunteers doubled psychological time travel might be possible, that,
from 15,861 to 31,403. A 2014 library report if you spent enough time in a room from the past,
confirmed that “the public library service in you might find:
England is at a crossroads.”
“. . . doors which let the lucky traveller, still
And given my long experience of a library young, walk out into a different summer and
“profession” brimful of jargon, bereft of another day.”
leadership and bare of jobs, I do not believe the
Chartered Institute of Library and Information I came close to seeing that other summer
Professionals (CILIP) is able, “to encourage and and, fascinated by rare books, looked forward
develop the library workforce and especially new to telling my incredible story, hoping to be
recruits and graduates.” encouraged and developed.

I really dislike CILIP, whose only response to And then I tried to get another job.
being at a crossroads was to consider changing
their name. It was a torrid tale of frustration and
fading hopes, my skills withering on the vine,
Talk about rearranging deckchairs on the my interest in rare books dying for lack of
Titanic, and then they didn’t even do it! development and my patience shortening like a lit
and burning fuse.
Not that my library life began badly. My
library course was mumbo jumbo, but my first Some men endure Thoreau’s “lives of quiet
job: the extraordinary experience of manually desperation.” I wasn’t one of them, and in 2006
cataloguing antiquarian monographs worth calmly and career-suicidally wrote out how I felt;
millions of pounds in a stately home. reasoning that I was doomed anyway and at least
I’d avoid ulcers of sheer frustration.
Aspergers have a firewall between their
everyday personalities and the manic nutter I called it The Gordian knot:
subroutine needed effectively to catalogue. If
I joke that “cataloguers make accountants look “It’s not often I start to write an article
like hippies,” I’m not actually joking. intending to crucify myself, commit professional
14
 an article (continued)
suicide and probably get myself beaten up by a could become terminal by the end of the decade.
rampaging mob of respectable librarians into the If that happened Britain could be writing off vital
bargain, but I’m now so disillusioned with the social and cultural assets. Public libraries used
profession that I would rather fall on my sword to be central to the life of many communities
than stagger through interviews mumbling tripe but they are increasingly marginalised.” The
I don’t believe about metadata, revalidation, ICT, report recommended a ten-year strategy for
twelve-digit Dewey numbers and all the other transforming libraries. Well the ten years is now
pseudo-professional jargon we have invented.” almost up, opportunities have been lost, all-
encompassing government support has gone out
It sounds funny now. It didn’t then. of the window and with it one of the mainstays of
Vampires, Hollywood and authorship were parts a democratic and civilised society.”
of a future I could not know; and I truly believed
I’d destroyed any chance of work by cheerfully Now it’s 2016 and British libraries are f****d.
insulting my colleagues. But my satirical blogs were read by Chaplin
Books’ founder, which led to the achievement of
However, library campaigner Tim Coates my life’s ambition: published authorship.
(former managing director of Waterstones)
published my death wish on his Good library blog I also thought my “career” had ended in 2011
and I went on to slag off librarianship in Tim’s when the NHS failed, laughably and amateurishly,
blog for the next five years. to give me the library assistant’s post they’d
offered me in writing. But in 2015 I got involved
God, it was fun. with Culter Library in South Lanarkshire — a
roomful of rare books near Leadhills Miners
My favourite quote was: Library, where it all began.

“Senior library managers should be shot out If public libraries should fall, maybe
of the USS Enterprise’s shuttlebay doors in their subscription libraries like Leadhills will rise again.
underpants.”
It’s been a fine and satisfying time showing
It was easy to satirize twits who talked tripe how my dying art’s done. It’s a pity my trade
about “social cohesion issues, automated tagging will pass away with me, but I can’t respect a
based on behavioral pathways, user-endorsed “profession” so unsupportive, indecisive and
ratings systems and the negotiation of a reference inefficient it opens a £189 million library in
question as opposed to the communication Birmingham in 2013 and virtually shuts it the
theory of reference interviews,” and I did. An following year.
email of mine laughing at their daft drivel won
letter of the month in the library journal Update in I place the last book on the shelf.
2008.
Time to go.
Nor was I the only rebel.
I look to the sky through the stained glass
In a 2012 issue of Post-lib, Francis Hendrix window, and step out into the light.
wrote: ____________

“In 2003, . . . we commissioned Charlie James Christie is the author of Dear Miss Landau
Leadbeater to undertake a review entitled Overdue. and The legend of John Macnab. He was diagnosed
It is still the best in-depth look at the sector. He with Asperger’s at the age of 37 in 2002.
finished by stating that “Unless decisive action
is taken now, the decline of our public libraries © James Christie 2016
15
 an article

Sexuality

by Christopher

I am a gay man in my forties with a diagnosis of elderly men. It would, therefore, seem to be
of AS, schizophrenia and OCD. Between the the case that gaining a clearer understanding
ages of 7 and 15 I was sexually abused by elderly of childhood sexuality is important in arriving
men. As an adult, I identify as a gay gerontophile, at a more thorough appreciation of child
meaning that I am sexually attracted to elderly development. In fact, compared to other
men. Traditionally, gerontophilia was loosely areas of child development, sexuality is one
defined by the DSM as a paraphilia which was of the least discussed topics and was entirely
regarded as a discrete mental disorder, much unrecognised until Freud’s pioneering research
like homosexuality was considered before it was at the beginning of the twentieth century. The
declassified in 1990. The debate as to whether question does, however, remain, as to whether
gerontophilia should be considered a mental sexuality is innate or socially constructed. That
disorder had involved considerable controversy is to say, whether, genetics or environmental
in the run-up to the publication of DSM-5 and and experiential factors play a part in its
the current consensus appears to be that only formation. I propose that there are elements of
distress or impairment (the general prerequisite both; that in addition to genetics, environment
for most mental disorders) make it considered and personal experience are probable factors,
a disorder: clearly in my own situation that is though to what degree each is responsible varies
not the case. I currently enjoy a loving, stable from individual to individual. I would also add
and caring relationship with a man in his that these underlying factors are most probably
eighties which offers me a more meaningful further reinforced by subsequent engagement
and sexually satisfying experience than the in sexual fantasy, fixation on a particular
cottaging (frequenting public toilets for casual object of sexual desire and repeated sexual
sexual encounters) which I was accustomed to self-gratification which all contribute to sexual
as a younger man. As a survivor of child sexual responsiveness and the formation of one’s
abuse, I am drawn to consider whether my adult sexuality.
sexual proclivities are in some way connected
to the experience of that abuse. Yet, despite a Historically those with developmental
prevailing view within the popular imagination conditions were not thought to have any sexual
and in a number of spurious online sources, feelings (Irvine 2005) which is related to the
which draw a connection between child sexual more general societal stereotype that people with
abuse and sexual orientation, there is no reliable disabilities were always dependent, incompetent
evidence to suggest that child sexual abuse is and a-sexual. Although, within the field of
complicit in the formation of sexual preferences, academic ASD literature, sexuality has been rarely
nor can it be said to be a determining factor discussed by scholars, Newport and Newport
in contributing to any form of homosexuality. (2002) suggest that people with ASDs are indeed
For many years, I too assumed that there was sexual and do encounter sexual abuse, while there
a connection between my experience of child is also some evidence to suggest that children
sexual abuse and my sexual preferences in my with ASDs are at increased risk of being sexually
attempts to conceptualise what had happened to abused and that this may be related to the unique
me as a child and its impact on my adult life. Yet challenges they face with socio-emotional
I also recall a period of being pre-sexual in early communication. The time has arrived, therefore,
childhood before the abuse took place when I for informed and mature discussion, social debate
was already attracted to the physical appearance and rigorous research within the broader context
16
 an article (continued)
of sexuality and disability; a taboo which finally in rendering the institutions of power accountable
needs to be broken. to the disempowered.

As Geoff pointed out in edition 77 (page Not only is there a need for greater
9), there is a higher proportion of LGBT recognition of diversity within the AS
people among the ASD community compared community, but also within the LGBT
to neurotypicals, yet prejudice against non- community which has yet to fully embrace the
mainstream sexualities within the AS community complexities of human sexuality. Hindered by
appears to be a major problem, as intimated by misconceptions about gay lifestyles promulgated
the Goth on page 3 of the same edition. Such by the mass media and popular culture, there is
homophobia is inexcusable, indefensible and an assumption that all gay men are hedonistically
intolerable. Does its presence suggest that there’s promiscuous, enjoy, or are even obsessed with,
an uncomfortable expectation of conformism anal sex, and wear pink and purple. I have
within the AS community which does not neither time for, nor inclination to, be part of
welcome diversity? Or worse, outright contempt the mainstream gay scene, much of which merely
for the outsider, the new and the different? Such seeks to capitalise on individuals and is obsessed
an underlying parochial and regressive mentality with promoting a particular image of young
within certain quarters of the AS community urban gay males, many of whom display prejudice
is surely a target for social and remedial action. and outright hostility towards or fear of older gay
Such elements would benefit from thorough men. This itself is part of the more general social
critical self-reflection and re-evaluation of the malaise due to decades of mass indoctrination
underlying causes of these prejudices and focus which exalts youth as a desirable state for all
on adopting more constructive perspectives. to emulate but which is, in fact, a socially
Such prejudices are, perhaps, themselves constructed and insidious product of the post-
symptomatic of similar attitudes within other war years which created a commercialised and
minority groups and of those whose own commodified youth industry to serve the interests
experience of the world is still too narrow. of a totally administered capitalist society and the
promotion of its false freedoms.
Norms can only serve any useful purpose
in order to evaluate the alternatives on any After many years of internalising feelings
given issue. Tolerance and individual freedoms of guilt, bearing the burden of shame, blame,
are everywhere under siege by the forces of self-abnegation, self-hate and carrying the
religious fanaticism, cultural provincialism and psychological scars of years of sexual abuse, I am
irrational authoritarian reaction, while dominant finally comfortable with my own sexuality. It has
power relations are an ineradicable element of been a long, often agonising, existential journey
modern society which have implications for in which I have had to renegotiate socially
all of us in the exercise of freedom and choice. imposed values and the legacy of trauma which
Centuries of attempted social regulation of sexual has impacted heavily on my ability to determine
behaviour (and its by-products, heterosexism my own social and functional outcomes. While,
and homophobia) are themselves related to for much of my life, my choices and actions have
the inherent contradictions in earlier historical been negatively and unfairly judged by others, as
periods which have been carried over to the a result I have learnt not to judge but to value and
next and in which these assume a new, often celebrate diversity in all its forms. This is what
pernicious, character. Never has there been a makes the world a beautiful place. Let’s not make
greater need to interrogate and contest prevailing it ugly by judging others according to divisive
assumptions, systemic domination and the canon and exclusionary standards which only serve to
of normative sexuality which curtail individual belittle choice and freedom, while playing into
choices and freedoms. Only a full transformation the hands of bigotry and the institutions of power
of private troubles into public issues can succeed and social control.
17
 a letter and a notice
Dear Goth Some may consider that a positive
diagnosis is not so important for
Attempting to obtain a diagnosis of Asperger syndrome this age group as they will not need
very late in life has it’s own particular difficulties. I am support and help with education and
thinking here of those, perhaps in their sixties or seventies, employment, and may not need social
whose working life may be over and who will have learned security benefits now that they are
only recently about ASD and recognised that this is the pensioners. Learning very late in life
cause of their lifelong problems. They will have grown about Asperger’s and realising that
up during a time when this condition was not known and you have an explanation for your
they will have had to make their way through life without own particular difficulties during
the support and understanding that is now available. that life is not enough - you need
During their youth they will have had to knuckle down the acknowledgement that a positive
and somehow conform to society’s rigid standards of diagnosis brings, as this will play an
behaviour or face the consequences! Low self-esteem, important part in accepting yourself and
misery, psychological damage and worse could well have explaining yourself to others. Having
been the outcome for those searching unsuccessfully for an a positive diagnosis withheld when
explanation of their social ineptness and resultant place on you know in your heart and mind that
the fringes of society. you are on the spectrum is exceedingly
painful to live with.
So what are the particular difficulties that this age group
encounter when attempting to obtain a formal diagnosis? Perhaps one day we can bypass the
A diagnostician will typically wish to to talk to parents or diagnosticians and take an MRI scan to
others involved in the upbringing of the person to learn determine whether or not we have ASD.
something of the history and development of the child.
For those in later life this may not be available as parents Yours sincerely
or others may well be dead. Remember also that this age
group will have had more than half a century of disguising Graham
their differences in order to fit in and may be able to
engage in small talk, eye contact and other “normal” social
interactions — so the signs will not be as clear as those
displayed by younger people on the spectrum. These
difficulties may be enough to prevent a positive diagnosis.

Important change to Asperger

United terms and conditions

notice by the Goth

The NAS has decided it needs to change rule 5 on page

19 of Asperger United. The NAS would like to keep in
touch with you about NAS services, support, events,
campaigns and fundraising. If you want to hear from the
NAS, you can opt in to this on the enclosed subscription
form. The NAS will only contact you in the ways you
want.
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) If you phone and leave a message on the
readers’ donations, and is independent of the machine, please speak slowly and clearly and
NAS. Although it is called “Asperger United” spell uncommon words, as the line isn’t very
it aims to be for the whole of the (reading) clear. Please give any phone number you leave
autism spectrum. That is, the concerns and twice for the same reason. Remember to give
joys of any autistic subscriber can be printed, your postal address so that we can find your
not just Asperger’s. record.
2) Asperger United is quarterly, published in 10) You can sign up for an email notifying you
January, April, July and October. If you do whenever a new edition of Asperger United is
not receive a copy when you expect to, please posted on the webpage above. Email
contact AU. [email protected]
asking for the notification by email and please
3) Pieces that appear in Asperger United are
include your full name, postcode and let us
credited using the author’s first name only,
know whether you want to subscribe to the
unless the author requests something
the paid paper edition too.
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your postal address. Or to unsubscribe from
everything that appears and it does this on
the email notification, include your email
behalf of the authors.
address.
5) The NAS would like to keep in touch with
12) If you want to resubscribe (or subscribe for
you about NAS services, support, events,
the first time) inform Asperger United and
campaigns and fundraising. If you want to
include your postal address and fee (for the
hear from the NAS, you can opt in to this
paper version) or email address (for the email
on the enclosed subscription form. The NAS
notification).
will only contact you in the ways you want.
13) Book reviews are the most popular thing in
6) If you subscribe to the paper edition and
Asperger United, please consider submitting
move house, please inform Asperger United
one. They can be about any book, not just
and include your old address as well as your
books about autism. Also, they do not have to
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be short (the Goth keeps most of his reviews
Royal Mail forwarding service (or another
short to leave more space for other writers).
forwarding service), you still need to inform
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other NAS publicity about that book, please
7) The current edition of Asperger United is make this clear.
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14) Although each issue is themed, submissions
www.autism.org.uk/aspergerunited
on any subject are welcome. Only some of the
You need to scroll down to the middle of the
letters and articles in each issue will follow
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to subscribe to Asperger United. space available.
19
 Asperger United

New social group

Connect Ealing
Next two meetings 11 and 25 October, 7pm

notice by Dan Mayfield

Hello Everyone! Email: [email protected]

I represent a department known as ASSIST Mobile: 07792 137 681

which is part of the National Autistic Society.
We are pleased to announce that we have begun Details of the group:
a new fortnightly social group called Connect
Ealing which takes place in Ealing Central Connect Ealing
Library in West London. a new social group for adults with Asperger’s
syndrome
This group is for men and women with an
Asperger’s syndrome diagnosis living in Ealing. Every 2nd and 4th Wednesday
We meet for two hours in the evening every 2nd
and 4th Wednesday of the month. Green Room
Ealing Central Library
We have booked the Green Room in the 103 Ealing Broadway Centre
library for our own private use and congregate The Broadway
there each time. London
W5 5JY
For further information regarding times and
so on, please contact: Dan Mayfield Welcome!

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: [email protected]
Website: www.autism.org.uk/aspergerunited

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