Friday, September 9, 2011

By The Book?

 Safety Guy with his new baby guinea pig, Flash, last summer.

Someone commented on my blog the other day that Safety Guy is a "classic aspie."  How true!  In fact, when he had an evaluation last year, the psychiatrist commented that SG was such a textbook example of a young man with Aspergers Syndrome that he could be used as a case study in the class the doctor was teaching at the university.  When we first had it suggested that he might have AS, I got a book with a diagnostic checklist of characteristics of Aspergers.  Check, check, check, down the list I went - and he fit most of the criteria dead on.  The "official" diagnosis later on was an anticlimax; we finally knew that day exactly what had made SG quirky and just a bit different ever since he'd been born.  Receiving a label for his differences was actually a relief to all of us, including SG.

But really, I know (and I'm sure the doctor knows, the commenter knows, and any parent of a child on the autism spectrum knows) that all people with AS/autism are individuals.  As easy as it is to make a list of symptoms and behaviors and compare someone to it, no one is really a textbook example of anything.  Quirks, warts, gifts, deficits and all, they're undeniably individuals.  Which may be why the autism community can sometimes seem so fragmented and, well, autistic about itself.  And why the upcoming revision of the definition of autism for the Diagnostic and Statistical Manual of the American Psychiatric Association, 5th Edition (what will be the DSM V) has caused such a ruckus in the autism community.  The new definition will essentially lump all autism spectrum disorders under one definition of autism, eliminating the diagnosis of Aspergers Syndrome, among other distinctions.  Many people (myself included) see this as a gross over-generalization that will not help people on the spectrum receive an accurate, specific diagnosis leading to improved treatment for their needs.  The response to a broad category of developmental issues shouldn't be to gloss over the differences from end to end of the spectrum for simplicity's sake.  Calling all ASDs "autism" isn't helpful to anyone.  It's like creating a park and saying that all the birds that will be in it are just birds, and can be kept together and treated alike - never mind you'll have hummingbirds, eagles, ostriches, penguins, parrots, ducks and flamingos all in the same habitat.  It won't really accurately describe any of them, or adequately meet their needs in the end.

Labels are easy. They're convenient, and help us quickly sort and prioritize information.  People by their very nature seem to have this impulse to simplify and categorize.  We need the labels to begin to think about how to deal with issues.  But life isn't simple, and neither are people.  The labels we use should be guidelines, not straitjackets.  Which is why I'm sometimes ambivalent about applying the labels "autistic" or "aspie" to our son.  Yes, he has Aspergers Syndrome.  No, it doesn't define who he is.  HE defines HIS autism for the people around him, not the other way around.  While I'm all too aware of his "classic aspie-ness," it's not who he is.  And I'm very glad that so many people in our life have taken the time to get to know him for who he is - smart, funny, quirky, sensitive, anxious, obsessive, and all the rest of his marvelous personality.  And after a while, the people who know him, befriend him and love him just take him as he is.  And isn't that what we all want in the end?

So much for labels.