asperger united july 2013

7/27/2019 Asperger United July 2013

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AspergerUnited

Produced by and for people who have autism-spectrum conditions

Edition 75 July 2013


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Asperger Unitedis a magazine run by andfor adults with autism-spectrum conditions

(although some parents subscribe on behalf oftheir under-sixteens). The magazine aims to putpeople who have the condition in touch witheach other and to share information so that theycan lead more independent lives.

Please note thatAUreceives over 00 letterseach quarter so it is not possible to respondto every one, nor for every contribution to beprinted. Discussions on editorial choices willnot be entered into. AUprotects the identity of

contributors by not printing full names unlessthe writer asks for his or her full name to be used.

Asperger Unitedis free. To subscribe you,we need your postal address. We ask for acontribution of 9 per year from overseasreaders and 15 from professionals andinstitutions to cover postage costs. Please makecheques payable to the NAS. Organisationsrequiring multiple copies: no extra fee, please get

in touch.

Editor the Goth

Telephone and production supportThe National Autistic Societys PublicationsDepartment

Asperger Unitedwas founded in 1993 by PamelaYates and Patricia Howlin, in association with

the Maudsley Hospital, and Mark Bebbingtonand Judy Lynch of the National Autistic Society.

This was in response to a recognised dearthof services for people with Asperger syndromeand the potential for self help and networkingas a means of support for this group.

The provisions for editors and sub-editorspost was to develop a publication that wastruly the voice of the people it was aimed

at. This post also provided the possibilityof work experience and responsibility andhas benefited those who have held theposition. These are Richard Exley, David

Wright, Martin Coppola, Ian Reynolds, JohnJoyce and the current editor, the Goth (whodoes not wear black).

Pamela Yates provided support and adviceto the editors until the publication was handed

over to the National Autistic Society in 000.

The nameAsperger Unitedwas chosenby the group of original readers as the mostappropriate name for the publication.

This was suggested by Anna Kaczynski,formerly Cohen.

Please send all correspondence andsubscription requests to:

Asperger Unitedc/o The National Autistic Society393 City RoadLondon EC1V 1NG

Tel: 020 7903 3595Fax: 00 7833 9666

Email: [email protected]

All we need is your name and address andwe will add you to the mailing list free ofcharge.

Thank you to Graeme Lawson forproducing theAUlogo.

Please note that the views expressed inAsperger Unitedare not necessarily those of theeditor, the National Autistic Society or thoseinvolved in the publication of the magazine.

Asperger United

Contributions for the next issue should reachAUby12 August 2013

Asperger Unitedis available in

large printon A3 sheets (double the size of this page). If you

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


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editorial

the mental-health edition the next issue notice is on page 6

Contents

Welcome to the July issue ofAsperger United,for which there was another bumper crop of

submissions.

Topics are merging into each other at themoment, as we move seamlessly from work tomenatl health to diagnosis to living, sometimesall in a single letter and this is no bad thing!

Next month (August) I hope to see manyreaders ofAUat Autscape, like last year. Ifind this event a marvellous way to recover mysanity after months in the wide, hostile world.

I look forward to meeting familiar faces, likeSteve who reviews Rubberneckerin this issue, andhopefully also some new faces. The venue has

plenty of space where people can spread out andbe alone, and beyond that is some fine Yorkshire

countryside, so the more the merrier(!)

The subject of empathy continues in this issue,and it looks like this is a topic of considerableinterest. How much empathy, sympathy andcompassion do you think you have? I anticipatefurther letters and articles filling my postbagsoon.

Fingers crossed for a good summer: it willbe as good as we can make it theres still very

little help but things are changing,

the Editor

Painting by Chris . . . . . . . . . . . . . . . . . . . . .covera letter from Chris appears on page 17

Feature letter about diagnosis . . . . . . . . . . . .4-5from Jacqueline

Book review by Neil . . . . . . . . . . . . . . . . . . . . . 5The journal of best practicesby David Finch

Group notices . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Letter replying to Mikey from Michael . . . . . . 6

Book review by Steve . . . . . . . . . . . . . . . . . . . . 6Rubberneckerby Belinda Bauer

Pen pals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7-8

A meeting of two minds story by Alis. . . . . . . . . 9

Letters to the Editor . . . . . . . . . . . . . . . . . . . . 10one in reply to Davids feature last issue,

one in reply to Roberts letter last issue,and one about exclusion

AS: where a lack of empathy is positive!. . . . . . . . . .11article by Neil

Work, part two . . . . . . . . . . . . . . . . . . . . . . . 1-13article by Julie

This train is bound for glory . . . . . . . . . . . . . . . . . 13review-cum-group-notice by Cara Dovecott

Letter about life from A Contributor. . . . . 14-15

Book review by Cos Michael . . . . . . . . . . . . . 15Learning the hidden curriculumby Judy Endow

Beware of the werewolves. . . . . . . . . . . . . . . . . . 16-17a genre-crossing sports pieceby Cara Dovecott

Letter about mental health by Rob. . . . . . . . . 18

The rules ofAsperger United. . . . . . . . . . . . . . . 19

Book review by Tom. . . . . . . . . . . . . back coverAgainst a dark backgroundby Iain M Banks


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feature letter

I have wanted to contributesomething to the magazine

for a long time, but did notknow how I could find words. . . but since reading the lastedition I received this week, Ithink I might be able to writesomething now.

I would like to write aboutgetting a diagnosis as anadult, and how I feel about mydiagnosis, including how I feel

about the proposed changesto the American diagnosticmanual (DSM-5).

I have had psychiatric helpever since I was a teenagerliving in New Zealand. (I amnow 54.) I did not understand

what was wrong with me allthose years ago: I was admitted

to a psychiatric hospital becauseI could no longer look aftermyself, I was very neglectedand I did not have a family wholoved me. The psychiatriststried very hard to help me, butthey could not reach me. Theydid help me, though, to leaveNew Zealand so I could tryand have a life of my own faraway from my family. I came

to England first (I was 21years old) and a psychiatrist inEngland was very good to meand wanted to help me, but Idid not want to go back withhim to hospital. I wanted to beon my own. I came to Hollandand I have lived here eversince. All the years I have beenhere I have only known goodpsychiatrists who have alwayshelped me any way they could.

In 1989 I was admittedonce again to a psychiatric

hospital, and from this time Istared receiving help from a

psychiatrist whom I still seetoday (I see him now onceevery six weeks). It is thispsychiatrist who has told methat all the psychiatrists whohave ever seen me, and triedto help me, have always foundit very hard to know what mydiagnosis was. He has also notknown for many years whatmy diagnosis might be. He has

thought of autism, and he hasconsulted a colleague who isa specialist in autism here inHolland. Now, after all theseyears, he says I have an autism-spectrum disorder and I alsohave a schizotypal personalitydisorder. He also says that atdifferent times in my life the

whole psychiatric diagnostic

manual could have beenapplied to me. (Maybe he wasexaggerating a bit? But I havehad very many diagnoses.)

I wanted to tell all of thisbecause I have always hada positive experience withpsychiatry, even though theydid not know until the last fewyears that I have autism. I have

come a very long way since thevery traumatized child I oncewas. There was no help thenfor me, and it was only whenI was able to get help frompsychiatrists in my teenageyears that I started feeling theremaybe really was a world outthere that could help me. I havea home of my own now, with alovely garden I like to work inalmost every day. I have friendsI meet at my local athletics clubevery Saturday morning. Werun first and then we drink

coffee together afterwards.They have slowly become my

friends I can be with and I amvery glad about that. For yearsnow I also have been able tokeep my job doing admin workat the local university hospital.My boss and the people I work

with know I cannot handle a lotof social interaction so they donot pressure me too much andleave me alone to work quietlyon my own. I have a room

where I can work alone. Theyknow I am happiest like this,and they are very happy andpleased with all the work I do.I get good reports about howhard I work and how extremelyaccurate my work is.

Part of my work is to bevery acquainted with the DSM

(the diagnostic manual forpsychiatry). I am extremelyinterested in psychiatricdiagnoses and for the longesttime I have struggled myselfto wonder what my diagnose

was. These last years I have notbeen able to decide whetherI have Asperger syndrome orhigh-functioning autism. (Mypsychiatrist believes it may

probably be more the latter).So I was very pleased whenthe reports came out aboutthe changes in the new DSMand how they see my diagnosejust as my psychiatrist does: anautism-spectrum disorder.

I would like to add justone last note to tell how so

very deeply grateful I am toLorna Wing for all her work oncatatonia in autism-spectrumdisorders. I have read the bookshe wrote on this subject and


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I have recognized myself somuch in the people she has

known and described in herbook. It is the recognitionof these catatonia-likestates when I was a littlegirl, and how it appearedagain later in my teenageyears, and again and againin my life whenever I havebecome overwhelmed anddeeply distressed and hadto go back into hospital,

that has made it very clearto my psychiatrist (andthe specialist in autismhe consulted) that this isautism.

I fight now very hardfor myself to make sure I donot ever again find myself insituations where people are

expecting too much of me.I know others often cannotunderstand why I need tobe alone so much, and whyI cannot be among people alot interacting the way theydo. I need my quiet timealone. And I am happy nowin my life, and accept morethat I have needed to befar away from a family who

have never ever been able toaccept me the way I am.

I do not see myselfas autistic. I see myselfas Jacqueline, and I haveautism.

I do so hope that all Ihave written will maybe helpsomeone else, the way otherpeoples words have helpedme.

Jacqueline

feature (continued) and a book review

On the verge of his marriagecollapsing, David Finch

discovers he has AS. Heinvestigates the condition, andrealises that it accounts formost if not all of thedifficulties he has experienced inlife. He resolves to become thebest husband and father he can

and starts to collect notes,thoughts and information in hisJournal of best practices.

This book is well-writtenand, although there are manyreferences to the journal entries, itis not a transcript of it. Instead,Finch devotes a chapter to eachof the problems associated with

AS, including: feelings andemotions; finding out aboutthe interests of other peopleto help make connections

with them; empathy; loyaltyto family; working out what isreally important to you/yourfamily; being a better father; andsocialising. A typical entry is:

Go with the ow

Purpose Flexibility isan essential social skil l, likecommunication. Being inexible

prevents me from experiencingjoy which is right in front of me.It stresses me out. My failure toadapt has driven a wedge between

Kristen and me. Its making me abad role model for my kids.

Payoff If I can learn to gowith the ow, then I will be amore stable husband and father.I wont have to live in a constantstate of agitation. I may startenjoying things!

Process Start learning topick the battles. Learn the

difference between critical andfavourable outcomes. Emilyand Parker never, ever colouringon the walls with crayon wouldbe favourable. Raising kids

who dont ip our every timesomething goes wrong leading by example is critical.If necessary, ask Kristen to helpdefine whats important. (pages10-11)

Usefully, the book includesa reading group guide to helpdiscuss it.

Following on from thereview ofWhat men with ASwant to know about women, dating

and relationshipsin January, Ithink this book complements itperfectly. AS is fundamentally

a social disorder, and itsrelationships with others especially our loved ones thatsuffer most as a consequence.

The journal of best practices

by David Finch

Scribner Book Publishing

ISBN: 978 1 43918 974 0 8.90 / $16

review by Neil


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three notices, a letter and a book review

Group notices

Autonomy

The self-help and social group foryoung people and adults with Aspergersyndrome in Shropshire, Telford and

Wrekin and the Borderlands.

If it is to be, it is up to me!

If you are interested, please contactSara or Eric Heath at

[email protected]

01743 821 363

DearAsperger United,

I have written to you before, severalyears ago. I am in my sixties and have

Aspergers syndrome. I spent severalyears volunteering for Autism London,until they closed the office in 2011. I amnow involved in the Asperger supportgroup known asALAG (Autism London

Asperger Group). Details can be seen onthe Autism London website which is

www.autismlondon.org.uk

or email [email protected]

to book a place and for details of thenext meeting (the regular first-Tuesday-of-the-month meeting is held in Kentish

Town at 18:30).

Unfortunately, other means ofcontact are not available,

Desmond

If sufficient material is sent in, the theme forOctober will be strategies. If little is sent in, howabout relationships? Vote with your contributions:the more submissions on a subject sent in (fromdifferent people), the more likely that that subject

will be the theme. Writing on any subject is still

welcome, as are ideas for new themes, fillers (forputting in small spaces like this) and artwork.Remember, if you want to see different content inAU,the best way to change it is to send something in!

Dear Sir,

I totally agree with Mikey (Asperger United74, page10). The NAS are doing good work for children. Butwhat about adults?

I have my hobbies of taking newspaper cuttings, andantiquarian books. But I hardly ever meet anyone exceptmy sister, who lives two miles away.

Yours faithful ly,

Michael

Rubbernecker

by Belinda Bauer

Bantam Press

ISBN: 978 0 59306 692 8

14.99

review by Steve

Convincing characterization couples with a captivatingstoryline to suggest that this novel will soon come torival Haddons Curious incident of the dog in the night-timeinintroducing the public to the world of the Aspergic in

a way that Sherlock Holmes could not quite manage.Like both The curious incidentand the Holmes stories,Rubberneckeris destined, Im sure, for screen adaptation.


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pen-pal page

How to reply to pen pals

> Please remember to let us know the name andnumber of the person whom your letter is for. (Allpen pals are numbered by the editor, not the person

who sends in the advert.)> Please remember to put your address on your letter.> To contact a pen pal, please send your letter to

Asperger United, c/o The National Autistic Society,393 City Road, London, EC1V 1NG, or [email protected]

> We will pass your letter on to the person you wishto contact. However, we cannot guarantee theperson will reply as that is entirely their decision.

> Please note that all pen-pal letters sent viaAspergerUnitedare opened before being passed on.

Pen pal number 153

Dear pen pals,

Im Richard, I am 30 years old, man, Ihave autism, learning disability, I am gay.

My interests are walking, meeting newpeople. I dont go out much as I find it hardto interact with people so dont really meetpeople on the scene and that can make melonely but would like to write to and maybemeet other gay men on spectrum to makefriends and socialise, as my mates who are onspectrum are all straight, so be nice to get toknow other men similar age from 8 to 39.

Pen pal number 154

Hello my name is Rebekah, I am nearly18 and would like to make some pen-palfriends. I was first diagnosed with Aspergerssyndrome when I was 7. Ive just passed mydriving test and enjoy going out with myfriends to the cinema to see the latest films.

I like to watch romantic films and comedies.Also I have an interest in cooking and baking,such as cupcakes and curries. I likelistening to music as it helps me think.Im into Katy Perry, One Direction,

Westlife, Avril Lavigne and others butit depends on what mood I am in to

what music I listen to. I like watchingsoaps such as Hollyoaks, Waterloo roadand Coronation street. I volunteer at theSt Johns Ambulance Service as I like tohelp others in need of first aid and makenew friends. I would like to hear fromnew people that are a similar age to meand have similar interests.

**Important notice please read**

Asperger Unitedis happy to publish pen-paladvertisements but we must stress that we are nota pen-pal or introduction organisation. We do notmatch people up and we cannot monitor letters(other than the first letter, that is sent via us) so

please be cautious when releasing personal details inyour letters. The National Autistic Society /AspergerUnitedcannot intervene or be held responsible forany ensuing correspondence between letter-writers.

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 youwant) toAsperger United. You can use the RoyalMail or email. The next pen-pal number will begiven to your advert when it arrives.

> Please note thatAUdoes not print dating adverts,as it is unable to provide suitable support.

> Those under the age of sixteen must have parentalpermission before placing a pen-pal advertisement

inAsperger United.

Pen pals


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more pen pals

Pen pal number 155

My name is Alicia, I am 1 years old. I amcurrently under a section of the Mental Health

Act in hospital.

My hobbies include music, drums, writingand art.

I would like to hear from anybody whowould like a pen pal.

Alicia, if you would write in again with your address,that would be helpful. Otherwise I cant forward

letters, Editor.

Pen pal number 156

Dear pen pals,

I am called Rob. I am 4 but like to be

called a teenager as dont like to be seen asadult. My interests are music: I designed dancemusic and I appear on radio! Would like tospeak, make friends with people who havetalent, interest. Ideally, people over 5 years ofage.

Pen pal number 157

Hi, my name is Sammy, I live in Brightonand would like pen pals who are Jewish likeme. I am 36, I have OCD and Aspergers.

I like PS3, guitar, Youtube and film-making, eating out and the cinema. I alsolike cats and dogs. My musical tastes are BobDylan and Led Zeppelin.

Look forward to hearing from you.

Twenty-two pen-pal adverts have been held over for

publication in the next fve issues, Editor.

Pen pal number 158

Hi. My name is Daniel. I live in Leeds. I am 37.I was diagnosed with Aspergers syndrome whenI was 3. I love to write and share my poetry andsense of humour with others. I consider myselfout-going and kind-hearted. I have OCD as well as

Aspergers. There is always something going off inmy head. I should probably write this advert fivetimes as I have a mini obsession with the numberfive. I feel interested to hear from people. It wouldbe great to hear from other possible writers, fans ofpoetry.

At the moment I am doing poetry on the A-Zof science fiction. I like horror movies, a big fanof the first two Rockymovies. I also like watchingFamily guy, Russell Brand and Ricky Gervais, plusSean Lock three of my favourite comedians. Ihave had some of my poems accepted for books.

Pen pal number 159

Hello, my name is Rupert. I am 5 years old,mixed race, male, from London. I would like somepen pals to write to.

I was diagnosed with Aspergers in 011. I alsocame out as bi in 011.

I am currently in prison and working on an

appeal against my conviction.

I enjoy listening to rock music and heavy metal,Im into power metal a lot lately. I like reading a bitof fantasy, mainly heroic fantasy with bloody fightsand battles. And I also enjoy going down to thegym here at the prison. I go five times a week.

I see myself as a free spirit, and I am a NorsePagan. I follow the old gods: Odin, Thor and

Frigga.

Anyone who writes to me must be 18 or over.Hope to hear from someone soon.


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letters to the Editor

Hi

I wanted to email as Davids feature on Work wasbrill iant. I hope he writes a blog and publishes it online, as he has a great writing style and he could reach alot of people.

Im a NAS Ambassador and in my workplace I amrunning autism-awareness month. Im going to sharethis article and Id love to be able to share more.

Please feel free to give David my contact details,

but crucially please give him the feedback.

Wonderful stuff!! Good for him on getting adiagnosis,

Louise

Dear Goth,

I think it is imperative that Robert understandsthat he can change his psychiatrist and should do soimmediately. It is disgraceful that a psychiatrist intodays world sti ll doesnt accept that Aspergers exists

it seems that maybe it is his psychiatrist that needshelp!

I also think Robert comes up with a very soundpoint as the majority of health care professionals

are NTs is there any hope of change? It actuallymakes me laugh really. NTs go on and on about usnot understanding their world but they dont reallyunderstand our world do they? And we do haveempathy and we do care our problem is that wemight have too much of it.

Anyway, I just wanted you to let Robert knowthat I think he should complain and get anotherpsychiatrist.

Regards,

Valerie

Dear Goth,

I have just received the 73rd edition ofAsperger United. I see its suggesting mentalhealth as one of the subjects for the Julyissue. Here is a rather (or at least Ithought it

was) funny incident.

Lunch club at church, the same womanwho had bull ied me at the Christmas lunchclub was at it again. So after putting up withthis so long I couldnt cope any longer I went

through three doors, slam, slam, slam.

Threw my bag across the oor, the oneshe had stolen at the Christmas lunch club. I

was totally distressed by now, headbanging,the lot.

Out comes this old guy, seventyish. Heshouts across the room to me, Sue, Ive . .. been . . . in mental-health work for thirtyyears. I looked up at him and promptly toldhim to **** off! He rushed back into theroom where they were having lunch withshock-horror-dont-you-swear-at-me as he

went.

Out comes my wonderful pastor (as was),Come on, Sue, lets take you home. Socalm, so professional, carries on walking ashe says it, and I follow him.

But who in the end got expelled from thechurch? Me. I was the one who was puttingup with the bullying, emotional abuse,exclusion.

I cant fully blame the minister as thereare some strong Northern women in thechurch.

But my health is so much better and Ivenot had any meltdowns since then, which

was February. I was expelled in March.

Sue


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an article

In June Bowdens excellent art icle in January,both she and the Editor strongly believe theyhave empathy and theory of mind. Like them, Ialso thought I must be empathetic after all, Icried when watching certain films (eg., Schindlerslist); when I hear pieces of music (eg., Barbers

Adagio for stringsand Mendelssohns Fingals cave);

and with frustration at mans inhumanity to man(eg., the school shootings in America).

The truth, however, is that this is notempathy: its compassion and sympathy. ProfessorSimon Baron-Cohen (SBC) defines empathy asoccurring when we suspend our single-mindedfocus of attention, and instead adopt a double-minded focus of attention. (Double-mindedmeans we are keeping in mind someone elses

mind at the very same time ie., theory ofmind). Empathy, therefore, is our ability toidentify what someone else is thinking or feeling,and to respond to their thoughts and feelings

with an appropriate emotion.

Aspies lack the processes that enable socialreasoning and emotional awareness of others.

We cant separate ourselves from our ownperspectives, so cannot access the double-mindedness required to connect with the

perspectives and feelings of others.

This explains why we often think people whoare hostile or ridiculing us are being friendly, and

why we have a black and white approach topeople tending to really like or dislike them.

Apparently, its creepy to tell strangers you haveonly just met your life story and that you wantthem to be your new best friend.

Similarly, when I have tried teasing, sarcasmor irony it is frequently perceived by others ascruel or hurtful without my intending this in any

way. When I was described once as arrogant,unempathetic and unlikeable I was devastated.

To find out how much empathy you do have,do an online search for the Empathy quotient.Out of a possible 80 points I scored just 18 (atypical Aspie score is 0). By comparison, NTmen would expect to score around 4 and NT

women around 47 evidencing the very cleargulf between AS and NT.

Society views a lack of empathy as aVery Bad Thing Indeed. In narcissistic andantisocial personality disorders lack of empathyis key to diagnosis. SBC categorises these aszero-negative disorders, in that there are noredeeming features to compensate for theirnegative aspects.

By contrast, despite Aspies also having

impaired empathy, AS is characterised bysystemising. So, SBC categorises AS as zero-positive as Aspies can identify patterns in theirlives, including rules of behaviour. This becomesa moral code to which we rigidly adhere. Weexpect others to do the same its only fair!

Aspies are often the first to jump to the defenceof those we perceive as being treated unfairly.

It is crucial that we (and those around us) notonly accept our diagnosis but also learn as much

as possible about the condition, its effects, and inparticular our strengths and weaknesses.

I can recommend the following books:

Simon Baron-Cohen, Zero degrees of empathy, AllenLane, ISBN: 978 0 71399 791 0

David Finch, The journal of best practices, Scribner,ISBN: 978 1 43918 974 0

The Goth did the EQ and scored 29, and does not confuse

it with sympathy. He feels he has much more empathy

than this for other autistics; its the rest of humanity hes

slower at understanding. LetAU know what you think!

AS: where a lack of empathy is positive!

by Neil


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an article

This piece is about my experiences of work,and my thoughts on the effects of Aspergers inthat context. Bear in mind that my own Aspiediagnosis is only about 30 months old, so I amstill exploring the concept; and that it came after

I stopped work, so I have not had a chance totest any of these notions. So I may be partlyor completely wrong. I would be interested incomments and comparisons.

Last time I detailed several problems I washaving throughout my career as an electronicsengineer. It was not until some months after Ileft that I was diagnosed with AS. I dont know ifit would have helped me to know sooner.

I am trying to analyse those problems in thelight of the diagnosis. I have had a few tentativethoughts on the matter:

First: people dont always tell you what theyare thinking. There are a number of possiblereasons for this:

1) they think you already know;

) they think you should know, and are beingsilly or stupid;

3) they think you dont need to know; or

4) they think you are being deliberatelydifficult.

This brings us to the subject of body languageand similar forms of non-verbal communication,

which Aspies are notoriously bad at!

Solution? Im open to suggestions. If yourcolleagues know you are an Aspie, it may help ifyou remind them of the fact, and ask if you are

missing anything. If they dont know and youdont want them to, you will have to be persistentand diplomatic again, two things that Im not

very good at.

Second: even when people do respondverbally, they are not necessarily talking the samelanguage as you are! Yes, okay, you are both usingthe vocabulary and grammar of UK English, butthere is a lot more to interperson communicationsthan that. As well as body language, there isthe entire collection of cultural assumptionsand attitudes which seem to modify apparentlystraightforward remarks into emotionally loadedchallenges, and this cultural subtext has been

almost completely invisible to me. Again, I dontknow whether this is typical Aspie, or a productof my having grown up outside the UK, or amixture of both.

Some examples of what I mean:

1) You may have noticed that to ask whyoften evokes a hostile response. This isapparently because the listener perceives yoursimple request for information as a demand that

they justify themselves.

) When someone says I dont understandyou, what they actually mean is: I disapproveof you very strongly indeed. And of course ifyousay you dont understand something, they thinkyou mean thatyoudisapprove. The problem hereis this: how can you learn if you cant tell peopleyou dont understand?

(UK English is full of such politeavoidances of real problems (not issues, please!).

These politenesses have taken on the meaningof the thing they disguise and have thereforebecome useless, and a barrier to communication.)

Work

part two

by Julie


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an article (continued), and a theatre review

3) Most of you wil l have heard of similes andmetaphors, which are ways of conveying what

you mean in a shortened and emphatic form. Youmay also have come across rhetorical questions,which are sentences phrased as questions butwhich are actual ly statements; they dont needanswers, but they are used to express doubt aboutthings. They are not always easy to detect. WhatI have a lot of difficulty with, though, are what I

will call rhetorical statements. These are phrasedas statements, but they are actually questions,or challenges. They can often seem to have noconnection to anything that is being discussed.

I find that they leave me wondering what thespeaker meant, or thinking, okay, but so what?,and I dont respond . . . and the speaker gives asmile or a nod and moves on to something else.Only much later, if at all, do I realise that thestatement was actually a challenge, demanding aresponse to check the speakers suspicions aboutsomething, and my failure to answer was takenas a confirmation of those suspicions. Except, ofcourse, that it wasnt a confirmation at all.

In a work environment this can be a seriousmatter, and (I have just this moment realised!) itmay have contributed to the failure of perceptionthat I noticed earlier. It can get you a reputationfor being a thoroughly awful person, a reputation

which is entirely undeserved, and which (becauseof the false politeness I also mentioned earlier) noone will ever tell you about.

It is sometimes possible to get people to tell

you if they think you have done something wrongat work. You have to keep calm, point out thatyou have both a right and a need to know, and askthem politely to explain. That approach did workfor me once. But first, of course, you have to spotthe challenge and that may not be easy.

If youve read this far, I hope I haventangered you, frightened you, or confused you,but that it has been of some use, and I would

welcome comments throughAsperger United.

In particular, the subject of work interviewsis one I feel requires a separate and detaileddiscussion. Any takers?

Its a summery evening, after a work-a-day Thursday.I join a gaggle who are chatting in the park, outsidea Vauxhal l tea shop. There are familiar faces, andI bask not in the sun but the sense of belonging.

Autistics live as salt scattered over a plate of chips,a few in every neighbourhood, making life tasteinteresting for others, but unused to being among

our own sort. I have a sense of being at thebeach: able to smell the salt air, a sense of holiday.

Everyone makes their way inside what is notjust a tea shop but the Tea House Theatre. Harry,

who runs it, has created a venue with a genuinewelcome, not just an arty vision. Alain, an autisticpoet, holds his monthly poetry events here. Thatevent is Paper Tiger Poetry, but to hear the roar,the poems must be heard live the drama is allin the delivery. There is poetry tonight: Alain anda couple of his regular stars will round off theevening with their virtuosity. But poems are thefinal carriage on tonights train of events.

We start, of course, with an overture. Louisaon recorder and Neil on piano. Mellow and clearnotes mingle together. The all-autistic dramacompany, Stim Rock Express, stage their firstperformance: actors take to the stage, some aredressed like the crew of the Starship Enterprise,

except they have a large T on their chests.Another has a green face: for some inexplicablereason the alien wants to drink coffee. Imaginethe cheek of coming to a venue that serves fortytypes of tea and wanting coffee! What planet ishe from? This play, which parodies the autisticexperience of living in a non-autistic world, isabout diversi-tea.

The audience is charmed. After the showthere is much excited congratulating between

the performers and the audience. Jenny, who setthe wheels of Stim Rock Express in motion atstimrockexpress.blog.com, promises me thatthis was just the first of many journeys.

This train is bound for glory

by Cara Dovecott


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14

a letter

I read with interest the letterfrom contributor Robert

which I found profound andinsightful. As I have AS at50%, to some extent I am ableto bridge both worlds butthis itself causes difficultiesbecause people find it harderto understand why every dayis such an immense struggle.Perhaps we are too altruisticbecause we always analyse inorder to try to understand

people; whereas, NT to NT,they seem to react immediatelyand not put up with sillybehaviour we daily undergo.

I work in retail, whichis a notoriously pressuredenvironment. It seems toproliferate with NTs who haveno insight of their behaviour,let alone understand anyoneelses. When I avoid suchpeople, they report me to mymanager for not speaking tothem. This has gone on my

work report as a reason I amnot given the next level ofresponsibility!

We have a new storemanager and at last he is

beginning to twig I am avery intelligent, competent,person with a high level ofself-motivation (common traitsin AS) but still find peoplesbehaviour difficult to fathom.

I made an agreement withthe store manager that, if Ibecome frozen with a situation,I write him a letter with the

background, any history betweenmyself and the person, andhow it is impacting on me. Theagreement is, this letter ismy

thoughts and as sacrosanct as if Ihad verbally given him a secret.

It is not to be filed but givenback to me, in the same way aconversation would not be typedout and filed. (You can testthe person if you are unsurethey are trustworthy by offeringsomething uncontroversial first,as it needs the receiver to be apeople person.) Treat this as aform of scientific experiment onNTs and it becomes easier!

Stage two, which I haventtried but will, if there isanother occasion, is to standin front of the complainerand ask, what exactly do they

want to talk about, as I havebeen informed they made acomplaint then wait for aresponse (saying nothing elseuntil they have spoken). Ifthey cannot respond, or areembarrassed, that proves theyhad no real complaint.

I suspect, word has gotround about this new wayof tormenting and it workedbecause I didnt react and themanager over-reacted (ie.,he might have asked each

complainer how this occurred,or else suggested they say tome, Is there a reason you are[seemingly] ignoring me?).

Years and years dealingwith this sort of person sapsyour energy, doesnt it? As wellas wasting years of your life. Iagree with Robert, the best wayis to find a therapist/counsellor

who is more analytical but,empathy needs to be there tooor it becomes psychoanalyticalparroting:

Client: They are reportingme again for not speaking.

Analyst: Not speaking?

Client: I feel really sad andfrustrated.

Analyst: Sad andfrustrated?

Client [shouting]: Whyam I paying you to repeat

everything I say? You are nothelping. You are like a parrot!

Analyst: Like a parrot?

Wouldnt you feel likechucking the analyst after 45minutes of that! My currentcounsellor, who is Eclectic,is very good. She listens,then we both work out howthe situation has occurredand if there is a pattern. Ithen come up with a strategy.Importantly, she increases myself esteem by listening to mysuccesses too and praising me,so I feel encouraged to sharecreative stuff I do outside mypaid job. She encourages me totalk about positives and points

out when I get into a cycle ofnegatives. This has been veryhelpful because I am not alwaysaware of when I am getting ina negative spiral.

Like your other reader,Thomas, I find writing thingsdown very, very helpful. AsI am creative, I turn some ofthis material into books

and poetry. I have beenkeeping a positives diary foreighteen months, into whichI write good things I see and


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15

a letter and a book review

that happen to me and it iscomforting to read back. I

also write negatives whichI kept in a separate journal,but as these days it is morepositive than not, I haveincorporated the latter into theformer.

I also want to agree withanother reader, who talksabout NAS being mostlyfor autistic children. I

have so many times soughtinformation and practicalsupport but they do not followup, and ask immediately forpraise so that they can fulfiltheir quotas. I think they arelike many other charitableorganisations of which GeorgeOrwell (I think) said, theyexist to employ lots of peopleand prevent funds (resources)being given to those whoneed it. That might soundharsh but it is true of manyof organisations, eg., CAB,Business Link, various helplines, mental-health charities,

who all pass the same tired oldinformation around withoutbothering to check if it iscorrect and up to date. When

you actually ask them to dosomething, they say it is nottheir remit or they have nofunding or etc., etc. . . .

I cant remember if we hada subject of strategies inAUbut perhaps it might be useful.I found many strategies inAU,so thank you for everyone whocontinues to write in, despite

the ongoing difficulties in thisNT world!

A Contributor

The hidden curriculumrefers to a set of rules andguidelines that are oftennot directly taught, but areassumed to be known. Thereare thousands of items on the

hidden curriculum, which isupdated every year.

This book is a courageousaccount of the authorsjourney to understanding thecurriculum, through trial,error, with the guidance ofher mentor. It is written withself-deprecation and a greatsense of humour. As a black

and white thinker, Endowhas learned, one situation at atime, what reaction is sociallyacceptable and what is not.Now she finds she is better ableto think through new situationsand adapt learned strategies,enabling her to work out howto react.

Each chapter covers adifferent aspect of life, fora person on the spectrum,

with examples of socialsins or gaffes. People on thespectrum will recognise many

and be surprised that someare considered gaffes. Mostpeople, with or without autism,

will laugh out loud, as manyexamples are undeniably veryfunny.

These lists are instructive,not just as learning tools forpeople with autism, but togive insight about the way the

autistic mind works, for peoplenot on the spectrum.

The book is a good read:entertaining, informative anduseful to those attemptingto understand the social andcommunicative dilemmas facedby many people with autism.

Learning the hidden curriculum

the odyssey of one autistic adult

by Judy Endow, MSW

Autism Asperger Publishing Company

ISBN 978 1 93457 593 2

19.50

review by Cos Michael, NAS Autism-in-Maturity

Project Manager, who is on the autism spectrum

This book and the ones on pages 5,6, 15 and 20 are available from

all good bookshops and through

Amazons charitable scheme at

www.autism.org.uk/amazonand if you use this address instead ofthe usual Amazon one, the NAS

gets a donation from Amazon.


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16

a sports piece

I live in Brixton: the very paving stones hereseem to conspire to overload the senses. Untilone Saturday back in April, Brixton was just myslum. But that was when I saw the werewolves.

It was Jacqui who told me they were there.She runs a group for young autistic adults in

Lambeth. The group had sounded like a goodidea until Jacqui said that one of the men in thegroup was a werewolf. Jacqui said I could see formyself at the Brixton ice rink, a temporary rink

while the Streatham rink was being done up.Curiosity got the better of me so I went.

Look closely, Jacqui said as we walked to theedge of the rink, these are no ordinary werewolves.

I can see that, they have gathered on ice.

Oh that, said Jacqui casually. Legend hasit that werewolves in northern climates havemystical powers. When ice sparkles under thelight of a full Moon the werewolf can smell theice, then they use their claws to skate across it.

Northern climates? Its Brixton at the end ofApril; people are having barbeques.

The pack father, Mike, was bitten whileliving in Toronto. He founded this pack when hemoved back to London in 00. Whats differentabout these werewolves is how they think.

What do you mean? I asked, trying tokeep my voice steady: plain old werewolves inmy neighbourhood was scary, ice wolves wassomething else, but the idea of ice wolves wascausing my stomach to clench.

There are various things which make eachof these werewolves unique, but most of thispack have what genetic researchers believe is ademonic canine form of autism

A what? I interrupt, somewhat breathless.

An autistic person transforms at full Mooninto an autistic werewolf, Jacqui replied calmly,as if she was talking about her pet hamster. Whydo you think I brought you here?

I stared at the pack wondering what I wasseeing. Wow, autistic werewolves, this is so cool. . . so what kind of things do they do?

Watch.

There were around thirty werewolves, somejust cubs but most much older maybe as old as5 in human years. They were wearing a kind ofarmour, bulky as yetis they glided across the ice

easily, the light glinted off their helmets, whichwere decorated with paintings of pointed teeth.

They skated in a circle, then following anorder from their leader, they stopped to lie on theice and do sit-ups. It looked like hard work. Thenthey were on their feet again, circling.

Next, pucks were released onto the rink andthe werewolves chased them over the ice withtheir sticks. They skated forwards and backwards

chasing the puck with great skill.

Mike, the pack father, came over. Heexplained that skating was a matter of keepingmoving: to be stil l was to fall. So the werewolveshad to be constantly interacting with the ice.

They gained ski ll through action and by beingpart of the packs activity. He believed this wasfreeing for autistics. I watched the werewolves,enthralled; their play looked like great fun. Was Ibeing bitten by the ice-hockey bug?

That night I headed home and checked mycopy ofThe curious incident, sure I had missed somekey point about full Moons. The facts are these:

Beware of the werewolves

by Cara Dovecott


17/20


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18

a letter

Hi Goth,

Many people have mentioned the discrepanciesbetween help offered to children on the spectrumand how little is offered to adults. My opinion onthis is that children are seen as malleable, theycan be forced onto the three paths that healthprofessionals are happy with: one, conditionedcondition, where the patient is convinced toconform to normality. Second that he/she hasa condition path where a certain amount ofdeviation from normal is accepted as long asnormality is the goal, and, thirdly, the containment

path, where the condition is seen as bad enough towarrant a separation from society. Many parentsof children on the spectrum go along with theseas though they are the only options, in theirmistaken attempts to normalize their offspring. Ifeel part of the problem is the attempts of health-and social-care professionals to use their empathyon situations they cannot connect with.

Those of us who reach adulthood without aproper diagnosis cannot be forced into these paths

in many cases trying to normalize then resultsin being diagnosed with mental-health problemsthat are concentrated upon by the professionalssimply because they are within their comfort zone.

Help should be sought if mental-healthproblems are suspected, butI was diagnosed withdepression when what was wrong with me wasmisguided attempts to conform to the norm.

The analogy I use to describe high-functioningautism is of driving a car on a motorway withoutthe ability to see indicators or brake lights. Thoughtof this way, the best help that can be given iscoping strategies and reassurances (not platitudes)that often the panic and distress can bealleviated. Instead of being treated as an illness,

Aspergers should be seen as an alternativeconsciousness which can have its drawbacks but,

when embraced, can be extremely empowering.

Their are many levels of autism but I am surethat in all cases input from sufferers wouldbe of much more use than the present system. Ifeel that a buddy system (monitored of course)

would be most effective, in both children andadults. Again, personally, I would have benefited

from help with tacti le/sensory difficulties,and from interactions with counsellors whichwere adapted to suit me rather than trying tonormalize my behaviour. I am sure I am not theonly person on the spectrum that would haveliked help with intimacy and boundaries.

The biggest step I took was realizing manyof my problems were in fact advantages. Then Ihad to reset my comparison index, ie., be careful

who you compare yourself with. Such a pity these

realizations came later in my life. This is anotherreason why adults receive less support, becausethe thinking seems to be: if you have lasted thislong you must be getting something right. Thisdoes not allow for those of us simply strugglingon and needing specific support.

I would like to feel that we could supporteach other and am sure that modern technology

would make this easier but I have my doubtsabout social websites, as we can be at adisadvantage in those environments.

Rob

[email protected]

Rob asked for his e-mail address printed so that, if you

have computer access, you can contact him about this letter

if you want to. Please consider writing to or emailingAUas well, Editor.


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stuff you might like to know about AU

1) Asperger Unitedis funded by the NAS andreaders donations, and is independent of theNAS. Although it is called Asperger Unitedit aims to be for the whole of the (reading)autism spectrum. That is, the concerns andjoys of any subscriber on the spectrum can beprinted, not just Aspergers.

) Asperger Unitedis free and is quarterly,published in January, April, July and October.If you do not receive a copy when you expectto, please contactAU.

3) Pieces that appear inAsperger Unitedarecredited using the authors first name only,unless the author requests somethingdifferent. This is done to protect your privacy.

4) Asperger Unitedadministers the copyright of

everything that appears and it does this onbehalf of the authors.

5) Asperger Uniteddoes not use your contactdetails for anything other than administering

AU. Your details are not passed on to NASMarketing, NAS Fundraising or any otherorganisation without your written permission.Please consider getting involved with the NAScampaigns and events.

6) If you move house, please informAspergerUnitedand include your old address as well asyour new address.

7) Even if youve paid for the Royal Mailforwarding service (or another forwardingservice if you live outside Great Britain andNorthern Ireland), you still need to inform

Asperger Unitedthat you have moved address.

8) If you phone and leave a message on themachine, please speak slowly and clearly and spell

uncommon words, as the line isnt very clear.Please give any phone number you leave twicefor the same reason. Remember to give yourpostal address so that we can find your record.

The rules ofAsperger United

(contact information forAUis on page 2 and again on page 20)

9) You do not have to be a member of the NASto subscribe toAsperger United.

10) The current edition ofAsperger Unitedisavailable at

www.autism.org.uk/aspergerunitedYou need to scroll down to the middle of the

page, where there is a link to the PDF.

11) You can sign up for an email notifying youwhenever a new edition ofAsperger Unitedisposted on the webpage above. [email protected] for the notification by email and pleaseinclude your full name, postcode and let usknow whether you want the paper edition too.

1) If you want to unsubscribe from the paperversion, informAsperger Unitedand includeyour postal address. Or to unsubscribe fromthe email notification, include your emailaddress.

13) If you want to resubscribe (or subscribe forthe first time) informAsperger Unitedandinclude your postal address (for the paper

version) or email address (for the emailnotification).

14) Book reviews are the most popular thing in

Asperger United, please consider submittingone. They can be about any book, not justbooks about autism. Also, they do not have tobe short (the Goth keeps most of his reviewsshort to leave more space for other writers). Ifyou do not want your review to appear in theNAS section of the Amazon website, pleasemake this clear.

15) Although each issue is themed, submissionson any subject are welcome. Only some of the

letters and articles in each issue will followthe theme. All submissions may be edited,especially for privacy, libel, and for fitting thespace available.


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asperger united july 2013

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