Monday, April 9, 2012

What is autism?

For a lot of people, the words 'autism' or 'Asperger's' conjure up any number of images involving children screaming at every insignificance or winning the spelling bee or excelling in one particular field but failing in all others. But when I sit down and think about what they mean, and especially what they mean to me, I feel somewhat lost.

The catchphrase of the online autism movement seems to be, "Once you have met one person with autism, you have met one person with autism", and it serves as a reminder that, other than sharing the diagnosis, all people with autism are different. American Idol finalist James Durbin, actor Paddy Considine, and even the inventor of Pokemon are all said to have an autistic spectrum disorder. They vary quite massively in what they do and what their interests are, and they are all far removed from the image of the disobedient child.

However, when I think about where I myself am in relation to everyone else, I begin to doubt the diagnosis I worked so hard to get and wonder if I have simply become the person I thought best matched the label.  The only thing that gives me relief is the fact that, from the age of two, autism had always been suspected and I was put through a battery of tests over a number of years, though no diagnosis was ever officially made.  I was a classic autistic child in many senses, and, when I think back to my childhood, I struggle to believe that I was that child because he seems so different than who I am now.

And when I think forward to where I am now, I think about how difficult I found/find social settings in high school and at university, and how many awkward situations I have had to muddle my way through while at the same time hoping that the ground would swallow me up and relieve me of the stress.  But when I think ahead to the present and the future, I think to myself that the only way is up and wonder how I ever got a diagnosis of Asperger syndrome.  I think that doubting the diagnosis is perfectly acceptable, however; it is surely the same process a person goes through when diagnosed with any other chronic disease, be it rheumatoid arthritis or emphysema, so I would be in the 'denial' stage - the first of several.

I thought when I was finally told that I have Asperger syndrome that I was so sure I had it that it wasn't a bother, but clearly it is to a degree because I'm still thinking about it and questioning it.  And it doesn't help that other people do things that I should be doing - the things people say to patients or the things that they do often leave me wondering to myself, "And they say I have Asperger's?"  But I can't go back on it all now, not after all the time I spent trying to be diagnosed in the hope that it would help things forward.

Anyway, autism is something you live with for your entire life, and other things such as my sensory issues and my lack of desire to spend time with other people do make me feel a bit more certain about things.  I just need to start acting less like a medical student and more like a patient, and let myself work through the rest of those stages, and then perhaps I will stop questioning myself!

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