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The DSM changes. Hot topic du jour. It seems to have engendered heated feelings on both sides. But me? I just don't know what I feel.
Had you asked me a few years ago, what my feelings were on this issue - I'd probably land on the side that many with Asperger's do - in defense of the Asperger's label. Now, I'm not so sure. My feelings are somewhat complex.
Several years ago - when I first learned about Asperger's - I popped out to the web to supplement my understanding. In the search box, I typed the word "Asperger's" - but I didn't find what I wanted. What was I doing wrong? Why did every search for Asperger's yield a page about autism?
I knew they were related, of course, but I thought of them as distinct entities. If they were distinct, why could I not find distinct resources? I wanted more than just a few sentences on a page...buried in a page about autism alone. Finally, one day, I clicked on just the right site. Aaah, here was info that was just about asperger's - stuff that would be specifically applicable to me.
But I didn't realize the flawed assumption from which I was operating: that information on autism would not be as valuable/relevant to me as information on Asperger's. Over time, I found that not to be the case. Having found a paucity of Asperger's-only resources - I eventually gave in, and began paying more attention to the sources I had previously dismissed...and found a lot of great information. Stuff that was directly applicable to me.
Hmmm - could it be that, in some ways, autism was not so different from Asperger's?
This question led me back, full circle, to the first moments I suspected that I was on the spectrum - close to twenty years ago, when I saw the movie "Rain Man." One sunny afternoon, I popped the movie into the VCR...and I found myself drawn to the TV, as if by a siren's song. "He's Like me!" I remember clearly thinking as I stood just inches away from the screen, staring raptly. This was it! This was the answer I'd been seeking for years. This was why I was so different. Why I struggled so much.
I became obsessed with this movie, and everything related to it. So, when I heard somewhere that the medical consultant for the movie, Dr. Darold Treffert, had written a book, I had to read it. I rushed out to the library, and grabbed up their only copy. When I got home, I immediately settled myself on the front porch to read it. But, as I flipped through the pages - recognition faded. Slowly, the book dropped. Crestfallen, I slammed it shut, and shoved it away. This was not the solution I had so expected and anticipated.
Despite my disappointment, I was never able to shake that powerful first impression. In my journals, when I wrote about my issues in life, I would frequently refer to myself as being "like an autistic" or compare myself to Raymond. But it would be more than ten years before I'd officially open the book on autism again. This time it was a magazine. Wired Magazine. That article, and those that came after it, cleared my confusion once and for all.
What I came to learn, was that I had been bitten by the flaw in Rain Man that causes so many in the autism community to dislike it -- despite its best intentions, for many it created a false impression of autism. Why?
Rain Man was billed as a movie about autism. Yet the hype around it focused on Raymond's Savantism...without differentiating the two. Leaving naive viewers to believe that the two were one and the same. They are not.
What I had identified with in Dustin Hoffman's portrayal were characteristics of autism. The anxiety. The trouble with change. The repetitive speech and movements. The rules-based, inflexible patterns of thought. The social disconnection. The fascination with details and sensory issues. The compulsions. All there.
What Dr. Treffert wrote about, were characteristics of Savant Syndrome...the amazing abilities that so caught the attention of the public. Wild feats of memorization. Calendar calculations. Extreme mathematical abilities. Characteristics that can occur alongside autism - but do not define autism. And certainly did not define me.
This was the solution to my Rain Man confusion. I was autistic. But I was not a savant.
So, what I'm going the long way to say, is that I never had an issue, as some do, with calling myself autistic. It was the first label I came in contact with...and is shared with others whom I admire and feel a kinship to, such as Temple Grandin.
As a label, Asperger's has done well by me, too. It is a strong identity - one that's been groomed to have more positive connotations than some other diagnostic labels. Because of that, there are those that feel that replacing the Asperger's label with an autism label would change people's perceptions too greatly. That it will lower peoples' expectations of our abilities through negative connotations.
Perhaps I'm naive...but I like to hope that the opposite will be true. That maybe some of the optimism that some apply to the Asperger's label can be absorbed into the autism label. And maybe, it will encourage us to look at abilities more fluidly, and see that ability is not black or white.
There are others who would object to this direction as well, arguing that folding "higher functioning" people into the autism category would take away from services for those who are more needy. That if people see those with Asperger's as the face of "autism" - it would divert energy from helping those who would be labeled "very low functioning."
I understand their concern, but, shouldn't we help everyone, to the best of our abilities, regardless of their perceived "functioning level?" (Increasingly, I find "high functioning" and "low functioning" labels to be problematic, too, but that's a topic for another time.)
In the end, I struggle with all of it. Personally - I don't care what I'm called. Call me purple if you like... But, when it comes to the larger societal implications of labels, I find myself overwhelmed. What's the best solution? I just do not know.
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