A Survival GUide for People with Asperger Syndrome

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# On September 10th, 2007 at 10:58 pm Emma Segar Says:

My name is Emma Segar; I’m Marc’s sister. I’m posting this on a few forums where Marc is mentioned, to clear up any confusion around his life, his guide and his death. Please feel free to contact me if you have any questions about Marc and his work. My e-mail is purplepooka@blueyonder.co.uk

This has been a difficult thing for any of his family to come forward and talk about. Obviously it is upsetting for us, and I think we’ve also felt for some time that it wasn’t really necessary, or appropriate, to make public announcements about Marc on the internet. However, ten years on, finding Marc’s name in unexpected places all over the net, from blogs and autism forums to Hollywood film proposals, I’m beginning to realise that, whether we like it or not, public interest in Marc is now a fact, and I would rather put up the facts from our perspective and an e-mail address for questions than keep stumbling across guesses and speculations.

Marc’s death:
Marc’s death was a suicide, not a car accident. He drove out to the M1 in the middle of the night, parked at a services and walked onto the motorway. He was suffering from depression, but not panic attacks as has been suggested, and I believe that he was thinking clearly and knew what he was doing at the time. He had written a very brief note on his computer, which he hadn’t shown to anybody or left anywhere it could be accidentally found. It wasn’t a cry for help, just a confirmation of intent.

There was no one particular event that brought it on, but many contributing factors. We have been through the process of blaming his (mild) drug use, his difficulties in maintaining friendships, the stresses of his work, and of course we have blamed ourselves for not seeing it coming. I still believe that the greatest influence on his decision was the pressure that he put on himself to overcome the barriers of Asperger’s Syndrome, and his difficulty in putting those barriers into perspective with his many achievements.

Marc’s Guide:
The Guide itself wasn’t an enduring obsession but a passing interest, which he updated a few times and then dismissed as too incomplete to be useful. He began work on another guide to help with conversations, which was full of lists of band members, football teams, films and TV programmes, so that readers would know what NTs were talking about when they discussed these things. He gave this up when he realised how quickly it would become outdated, not to mention the enormity of the task of writing what was essentially a bluffer’s guide to everything.

His view of the non-autistic world, despite his wide experience, extensive research and personal disregard for the conventional, remained irredeemably cut and dried. I remember arguing with him about the first draft of the Guide. I thought it gave the impression that it was somehow wrong or bad to be autistic, and that he should include a passage to the effect that readers didn’t have to follow these rules if they didn’t want to – it was just background information to help them make a personal choice. He said that those who read it all had to live in this world, and the world wasn’t going to change, so there was no choice. I think he changed his mind later, after meeting more people with Asperger’s Syndrome, but he never quite made the leap of extending the validity of that choice to himself.

I wish that Aspies For Freedom and all of these blogs had been around then. There was really very little at the time in the way of information or organisations run by and for Aspies, and perhaps a group of that kind might have persuaded him that he could lead the life he wanted to without having to put himself in such intensely stressful situations. I believe that he would have had a lot to say on these forums, and the most difficult thing about posting this is to see him being talked about here, instead of seeing him talk here. Even those who knew him best can’t begin to speak for him, but I know he would have had a great deal to say.