“Through the fire and through the flames you don’t even say your name, only ‘I am that I am.’ But who could ever live that way?” -Vampire Weekend
Defining autism is always a fucking nightmare. Just about every criterion you could possibly come up with would be flatly contradicted by the personalities or experiences of at least a hundred autistic people.
Not all of us are shy, not all of us are good at math, not all of us are bad at sports. Yeah, we’re socially awkward, but what does that mean?
People always want to know what autism is, and what Asperger’s is, and what am I supposed to tell them? Nowadays I can’t even haul out the Diagnostic and Statistical Manual of Mental Disorders, because according to their latest edition, Asperger’s doesn’t exist.
I do public speaking from time to time, and every single time somebody wants to know what autism is. It doesn’t seem like an unreasonable request, so they’re always puzzled when I respond with bitter, hollow laughter.
Then I try to tell them how complicated the autistic spectrum is, and how diverse it is, and that’s not what they want to hear.
They want me to Explain Autism. What’s the gestalt? What’s the gist? Can’t I boil it down to an elevator pitch?
Well actually, most autistics are spectacularly long-winded, and couldn’t boil anything down to anything.
Most of us, but not all.
So I always come up with some half-hearted definition which doesn’t satisfy me, and doesn’t appear to satisfy anyone else, because it’s either ludicrously vague or transparently inaccurate.
What makes it even worse is that for most of my life, I didn’t even know what autism was. I didn’t even know that I had it.
I was this weird, complicated little fucker who learned to read at the age of two-and-a-half, spoke like a tenured professor, and was obsessed with Star Trek, mannequins, and death. I couldn’t tie knots or ride a bike, I couldn’t do arts and crafts at all, and I had such a severe speech impediment that hardly anyone could understand what the hell I was saying. I had friends. I enjoyed playing games with my friends. None of the games I was interested in were ever structured. I did not play sports. I played make-believe. I played with action figures. I played with Lego, though I was really bad at it. I loved reading. I read all the time, especially after I started getting bullied in grade one. I’d read anything I could get my hands on. Picture books. Chapter books. Non-fiction. Cartoons. Magazines. Anything. I had a major depressive episode when I was nine, and all of a sudden my catalogue of charming eccentricities were seen as perhaps indicative of a deep-seated mental problem. I went to approximately 582 specialists in three and a half years. They gave me a hearing aid. They diagnosed me with non-verbal learning disorder. They diagnosed me with Asperger’s Syndrome. They tried to diagnose me with ADHD, generalized anxiety disorder, and pervasive developmental disorder (not otherwise specified), but those didn’t stick. By the time I got my diagnosis, I was a socially isolated, weird, complicated fucker.
That’s autism. My experiences, my failures, and my triumphs- everything that makes up my life- is autism.
But it’s just one autism. There are as many autisms as there are autistics, and every single one of them is distinctive.
But there’s plenty of overlap- enough to make it clear that we’re a culture, a community, and a family. But we’re not at all cohesive. We can’t be identified on sight, and we’ve never had a homeland. There is no tropical land of Aspergia from which we sprung. We are vagabonds.
Isolation is at the heart of the autistic experience. We go through life not quite understanding other people, and not quite being able to connect with them. Some autistics are able to forge close personal relationships, and some are able to meet other people on the spectrum. I’m lucky enough to have had both of those experiences.
My autism is not especially lonely. I’m content with the small handful of emotional bonds I have. My autism is snug and warm, like a hobbit hole.
And what do you know, I managed to boil down autism in under a thousand words. It’s a miracle.