My ten-year old has Aspergers. He’s proud of his place on the autism spectrum, referring happily to himself as an Aspie and chiding me for my neurotypical status. The way he sees it, he has a spot in a special minority. He will proudly remind me that as a person on the autistic spectrum, he is one in 110. He is the one percent, he boasts.
But don’t call his Aspergers a disorder (as in “Autism Spectrum Disorder”). From his point of view, he’s hardly disordered. His order is just fine, thank you very much. Is it an autistic brain order? Certainly. But disorder? Nope. While he’s not been exposed to the idea that autism is something to be “fixed,” I can imagine he’d quickly point out that he isn’t broken.
I agree. His Aspergers is as much a part of him as his blue-grey eyes. In the past year and a half, I have learned plenty from the autistic community, a diverse group of people who fall all over the spectrum. I have fumbled my way through conversations about love, self-advocacy, and emotion, stumbling and standing corrected on many occasions. For several months, I left the autism conversations to others, wary of misstepping in my efforts to understand autism in general and my son in particular. A month back, I re-entered the conversation on Thinking Person’s Guide to Autism, responding to two editorials in the New York Times that called into question the reality of Aspergers.
Have no doubt. Aspergers is real. While it may be losing its place on in the DSM 5 as a new definition of autism emerges, incorporating (hopefully) those with Aspergers and the mysterious PDD-NOS, it is no less a real entity. Not so sure? Live with us for a day.
Aspergers, whether with that name or not, is disabling. Certainly it is more disabling to some than others, but, by definition, it “causes clinically significant impairments in social, occupational, or other important areas of functioning.” We don’t talk about that at home, not because it isn’t real to me but because, at this point, it isn’t real to him. Homeschooling has left us without a need for the accommodations he might require in a classroom. He simply doesn’t feel disabled.
So something must be going right. Truth is that he struggles plenty. Social life challenges him mightily, and while he’s gradually adding to his body of knowledge about the rules of relationships, the older he gets, the more tricky that game is. As I watch his brother navigate a kind, accepting crowd of teens, I’m often reminded that even for the most socially aware and conscientious, the teenage years are far harder than these relatively blissful pre-hormonal ones.
Make no mistake. I don’t care much for blending in with the crowd. I’d just like him to have some sure-shelter friends who will stand by him as he moves into those difficult years. He does have friends now: a few kind, tolerant souls who accept him for who he is. A subset of these stand up to him when he digs his heels in, and I love them for it. It’s connections with humans that I want for him. I don’t want him to be lonely.
I can’t say that any of his friends are aware of his diagnosis, although if he’s shared it with them or their parents have shared it with them, that’s fine by both of us. He recently outed his Aspergers in an online class, and the responses were polite and positive. I can’t think of a better outcome. No one fussed over it, and at least one child researched Aspergers and decided that he himself did not fit the criteria. While letting that detail out in class, he yet to write more about his Aspergers, preferring to blog about cats and history, with a brief foray of late into poetry (Bertram’s Blog). I’ve asked him if he’d want to share about that part of his life, wondering aloud if his positive view of autism might educate others. He’s still thinking that over.
It may be hard for him to write about it, as hard as it would be for me to write about being neurotypical. After all, he’s experienced no discrimination and feels empowered by his Asperger’s. The diagnosis was a relief, since it explained the difference he’d felt for so long. While the anxiety that accompanies his Asperger’s troubles him, the actual Asperger’s does not, at least to his way of seeing it. There simply seems to be nothing to say.
Whether he decides to turn his writing in that direction or not, I hope he retains his satisfaction with Aspergers. I am sure he’ll face challenges related to it over the years. Every day he struggles with transitions, sensory issues, paralanguage, and social norms, all related to his Aspergers. For now, however, he only sees the positive parts of being in the one percent. May the world of his future see him the same way.