Sunday, December 7, 2014

Autism is not an illness: The problem with how we diagnose Autism

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  1. This sounds about right to me. And thank you for the history re Asperger/Kanner. I started learning about ASD because I thought/think my son is autistic, and lately have started to think that in fact I am autistic as well. Now that I am thinking from the framework of being an autistic person, I can feel even more keenly how strange it is to say that someone "has autism" or that it's a disease or syndrome... I certainly don't like the Disorder part of ASD either. Autism does not feel like something that is separate from me or something that I "have," it's a word describing a trait that is inherently mine, like being female, artistic, heterosexual, etc. I can't even begin to imagine how life might have been different for me if I'd been subjected to a lot of childhood therapies that attempted to "treat" me.

    Something that I have been thinking about a lot is whether I would have liked to have been diagnosed as a child, or teenager, or later than that? I would like to be diagnosed now to find out whether autism explains why I've always felt different from other people. Of course I would never have benefited from the unfortunate social stigmatism that comes along with autism, but it would have helped me a lot if there had been someone, especially in my teen years, who had been able to tell me, "listen, the reason you have trouble connecting and understanding why other people act the way they do is because your mind works a little differently, not because there is something wrong with you or that everyone is making fun of you!" And maybe given me some tools to interpret allistic people better, if that's possible.

    Homosexuality was once a disorder in the DSM as well, so maybe autism can go the way that that "disease" did and simply become another way of being. Do we need to be diagnosed by an outside expert at all? I'm not sure. Is self "diagnosis" and then identifying as autistic adequate? I don't know. It's an idea.

    1. Thanks for sharing your thoughts Erin. There is a lot in there to think about, so I won't respond specifically to all of it. But I will say: if a person self identifies as Autistic, that is enough for me.