How I got to where I am

I think it started 10 years ago with an article in The Guardian. I don’t remember the article, but it must have been about Baron-Cohen’s Extreme Male Brain theory of autism, because linked to the article on the Guardian website was the AQ test. (Aside: I don’t want to start a discussion on the merits or lack thereof of the theory, I’m just telling the story like it was.) I took the AQ test and scored 32, which, on the graph also provided, put me onto the border between “extreme male” and “autistic”. I was intrigued. I was not horrified. I was not even terribly surprised. I might even have been a tiny bit pleased. I said to my friend: “Hey, look, I took this test, and it says I could almost be autistic!”

“But you’re not autistic!” was her instant reply.

“Well, no,” I said and left it at that. I didn’t think I was, myself. After all, this test was in no way diagnostic. For the time being, I didn’t think much more about it.

 

Actually, it all started much earlier than that. In fact, it probably started in 1989, when I saw Rain Man at the cinema. (Aside: I don’t want to start a discussion on the merits etc. etc.) The film made a big impression on me, and it was probably then that I became vaguely interested in autism. Not to the extent that I would actively seek out information, but whenever an article appeared in the paper, or a documentary on TV – neither happened very often – I would read it or watch it. Somewhere at the back of my mind, the subject was always present. It wasn’t until the early 2000s, though, that it occasionally came more to the forefront. I can’t even say what the triggers were, maybe whenever an autistic character appeared on TV – every crime drama has at least one episode featuring one – but for a few years my interest waxed and waned.

At some point I read Baron-Cohen’s book “The Essential Difference” and took the AQ test again, this time scoring 34. This put me definitely into “good chance you’re autistic” territory, if not emphatically so. I also scored 9/10 on the short version. I mentioned this to another friend, with exactly the same result (see above). I dropped the subject, only to take it up again some time later. I took the test for a third time. 34 again. Maybe there was something in it? Or why would the subject not leave me alone?

I can’t remember when I first seriously asked myself whether I could be autistic after all. Over the last few years, though, I have gone through multiple cycles from “I think I am!” to “Nah, forget it!” and back again. I started to seek out information, borrowing books from the library, and then pushing it all away again. The cycles became tighter, faster – I just couldn’t drop it.

Things came to a head last year, when I got Rudy Simone’s “Aspergirls” from the library. Suddenly there was so much I could identify with, much more than in any other book on the subject I had read before. I said “Yes! That’s so me!” so often when I read it, I felt I was finally on to something. And yet, for every trait I could identify with, there was one I couldn’t. I actually cried reading the book, because the resolution seemed to be so near and yet so far. Finally, something that described me, explained me – and not. I thought I had finally found my tribe, but since I didn’t tick all the boxes, they wouldn’t have me. It was like having the door of the clubhouse slammed in my face. It was like being shown something beautiful, something shiny, and being told “I know you want it, I know it would really suit you, but you can’t have it”.

I returned the book to the library and cried a few more times. But that wasn’t the end of it. Something compelled me to keep looking, keep searching. I hadn’t yet given up on finding my shiny thing. Then the internet came to the rescue. I discovered blogs. There were blogs out there by autistic women, women of my age, often diagnosed late in life, writing about their lives. Again, I found so much that resonated with me, that it gave me hope that I might have found a tribe to belong to after all. From them I also learned that you don’t have to “tick all the boxes” to be one of them. This didn’t decide the issue, but again it gave me hope. Still I was dithering, unable to decide whether to seriously ask the question “is this me?”.

What tipped the balance was probably my discovery of the Musings of an Aspie blog a few months ago. There was so much in it that was like me, I even showed it to my sister with the words: “Look, finally someone tells what life is really like!”

It was all there: the dread of the telephone, the horror of spontaneity, the impaired executive function – I’d never even heard of executive function before: could it be that I wasn’t just lazy? I read all the blog posts (yes, in chronological order) and most of the comments, and there were so many people with whom I had something in common, who had been in a similar situation to mine. That’s what made me decide: yes, there is something in the idea that I might be autistic, and it will be worth pursuing.

So where am I now? I’ve got an angel sitting on one shoulder and a devil on the other. One says: “It’s you! It explains so much! Look closely, and you will find the truth about yourself, about your identity.”

The other whispers: “Got ideas above your station, haven’t you? You just want to be special. You just want to make yourself interesting. You want an excuse for being lazy. Face it, you’re just a mildly depressed introvert with social anxiety, that’s all.”

Which one is right? I will only find out if I really dive into the subject matter and learn as much as I can.

So that is what I will be doing this year. I will seriously ask the question “Am I autistic?” and I will seriously try to find the answer. I will do proper research. I will continue to read the blogs and the books. I will talk to the #ActuallyAutistic folks out there. I will weigh up the evidence, and at some point I will hopefully come to a decision. This is the beginning of that journey.

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