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FAAAS, Inc.

Families of Adults Affected

by Asperger's Syndrome

Case History 5

(Built up from extracts taken from letters from the correspondent.)

Thank you so much for your kind letter and all the information. X went straight out and got Somebody Somewhere – and now Nobody Nowhere – and we have both just about read them.

The similarities are striking, except that X is gentle, compliant, charming, socially graceful even. But I always knew he kept this distance and he has never had a real friend. He just tends to blend in and get along with people, but in seven years of teaching he hasn’t had a single social invitation. He assures me, and I think he believes it, that there is no social interaction there. It was only after years of bewildering, baffling painful behavior that I finally stumbled across the diagnosis in Oliver Sach’s book, which was subsequently confirmed by Uta Friffi.

And then the shock of discovering that no help was available to me at all. I can think of nothing more painful than this, having to care for someone who does not and cannot ever care for you; having to make a choice between watching them perish or perishing yourself.

X is like a man fading away, walking off into the shadows, and I am totally powerless to do anything about it. I do know that he couldn’t have been more loved, by the children and me. And I sit so painfully alone now, still unable to get used to the idea that he can so easily walk away from his home and his family to his lonely bedsit.

He is struggling heroically to come to terms with it himself, reading whatever he can find on the subject, and doing a kind of visual diary – the saddest, most desolate pictures I have every seen in my life.

So it was a great relief to make contact with you and find that there was someone who understood without me having to explain the impossible! Like you – I’ve been made to feel – even by my dearest, oldest friends – that I was somehow “making it up”. Their intentions were good – they just didn’t want what seemed to be a very successful relationship to fall apart – and it all seemed too incredible to be true. But I’d become increasingly aware over the years that I was running the relationship single-handed. I put it down to ordinary boredom and apathy after 21 years of marriage. I had no idea what I was in for!

And in some ways – I preferred my blissful ignorance. The diagnosis has destroyed any hope I had that we can live together again. It’s like living with the abominable snowman! I’ve been too afraid to tell anyone for fear that they would misunderstand and treat X differently – or that they would think I was just finding something to blame. I’ve found the Autistic society completely unhelpful, they are understandably more concerned with parents and children. I have been thinking for a long time of writing about my experience, it’s somehow the only way I can deal with it. I’ve filled books and books with bewildered painful scribblings so won’t be short of material – and all in all, it is a very strange story.

One of the difficulties is that no two Asperger’s are alike, but there are certain distinct similarities. You said in your article that the bottom line is inappropriate behavior. For me it has been the paradox of an apparently kind and gentle man behaving with merciless, cold, cruelty, and then being distressed and surprised by the result.

I consider myself reasonably well educated and informed, but until I read Oliver Sacks’ book “An Anthropologist on Mars” I had absolutely no idea that one could be so able and so disabled at the same time. Asperger’s is very difficult to distinguish from the ordinary emotional inaccessibility that seems to characterize so many men – and only reveals itself over a period of time. Hence the greater need for public awareness and it is vital that health care professionals should be made more aware of this condition. Despite persistent efforts, I’ve yet to find one whom has even heard of it. My husband has had years of therapy from different people, not one of whom guessed at this.

I can think of no other condition where the individuals concerned and those who care for them are left so much to their own devices, and I think every effort should be made to alleviate this. There is no support. There is no guidance on how one might overcome the difficulties. The professionals working in the autistic field seem to be more interested in writing papers for each other than in the individuals concerned.

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