Monday, 7 March 2011

Asperger syndrome and Marc Segar

It's an easy thing to do when you are writing a research paper or a blog like this. You write the words to your post with the hope that people will read them (why else do people blog?) without sometimes fully understanding that to some people the words are not just words; they are much more personal than that.

Take for example my previous post on the proposed revisions to DSM. To me the various discussions on DSM and what form it will take in future, are of professional interest; the way that science is trying to 'improve' itself and refine its diagnostic criteria (hopefully on the basis of best available evidence).

To someone with autism or Asperger syndrome they are however much more than that. For those already diagnosed with Asperger syndrome for example, I could imagine (I can do only that) that the DSM proposals could be construed as a 'challenge' to their diagnosis and onwards to the 'identity' that the diagnosis confers, particularly as disparate from the more classical 'Kanner's autism'.

a child who perhaps has not even been conceived yet, who will one way or another reach the diagnostic threshold, the DSM changes if adopted, will shape how they view themselves and how they are viewed as 'a person with an autism spectrum disorder' rather than perhaps a person with Asperger syndrome (if presenting at the more able end of the spectrum).

I say all this because whilst admittedly on the 'outside looking in', there have been times when meetings, discussions, interactions show that words are not only words, they are much more than that.

One such occasion when this happened to me, was when I met a young man called Marc Segar. Marc was a young chap with Asperger syndrome who I met many years ago. He was a quiet, unassuming fellow and I remember whilst at a conference, sitting down and talking to him about lots of things, some to do with autism and Asperger syndrome, others to do with nothing in particular.

I was reminded about Marc following some recent discussions that were raised on the web about the resources available to help people with Asperger syndrome to 'cope' with various life situations and events. The hints and tips provided in this particular discussion were interesting and no doubt useful to some.
They did however get me thinking about Marc and a particular document he wrote about his experiences of Asperger syndrome called 'A survival guide for people with Asperger syndrome'.

The guide, which is free-to-view can be accessed here. It was written sometime in the 1990s and is, I think, an excellent read in terms of its content and applicability to real life scenarios. It was probably one of the original 'first-person' accounts of Asperger syndrome, but more than that, it was a very logical list of answers to questions about things and situations which to many (not all!) non-autistic / non-Asperger people are simply assumed.

I don't think there is anymore to say about this, so please read it and if you think it would be useful to anyone, pass it on.