I vacillate on the autism thing, and how it applies to N. I use it around the school, because it is a strap, a grabbing-on point, a way for people to understand my son and–very much more to the point–to justify putting forth time, effort, and especially money to help him. I use it because doctors and therapists have used it to describe him. I use it because it’s the primary disability listed on his IEP. But there are so many ways in which he doesn’t seem, to me, to fit on the spectrum part of the spectrum. I describe him, often, as the triangular peg who not only doesn’t fit in the round hole, but doesn’t look all that much like the square peg, either.
And yet, professionals of all stripes see him on a regular basis, and talk to me about him with concern about his disabilities, or with delight over his abilities, or with awe over the way he turns the former into the latter. They never say to me, “You’re a fraud. He’s fine. There’s nothing wrong with this kid. Get out of my office and stop wasting the taxpayers’ money.”
And yet, other moms of kids on the spectrum see him and smile at him and recognize him. They never say to me, “Get out of here. This kid doesn’t belong with my kid. This kid isn’t autistic. You’re no longer welcome in our club.”
And yet, when a girl from the school’s Special Day Class was mainstreamed into N’s classroom for one period a day last year, she was the one and only friend he had in class. When we go to a school function together, he looks shyly and somewhat longingly at the other kids in his class or grade, but ends up sidling over to that same girl and the other kids in her class, who he’s gotten to know on the playground. When we go to a birthday party, he finds the one other autistic child at the event to hang on the outskirts and not-talk with, until they discover that they both don’t mind being bopped over the head with a balloon, and then they spend half an hour doing that while the other kids do, you know, the actual party stuff.
That’s what’s always confused me. N doesn’t identify as autistic, or even as special needs. He doesn’t ask me about why he’s different; despite the number of pull-outs and therapists and various other accommodations that the other kids clearly do not get, he never mentions being in any way unlike the rest of the children he spends his days with. He’s never asked me why learning is hard for him, or why he needs speech therapy. (I’ve tried to bring it up many times, but he deflects, and I’m not going to force him into a conversation about it if he’s not ready.) He doesn’t even seem to realize that some of his behaviors are odd or unusual or babyish or even gross…even if I point them out as such. (His general response to any attempt to modify such behaviors is, “But I like it!”) And yet? The kids he so often identifies with are all those things: autistic, special needs, different.
I don’t get. Or, rather, I didn’t.
Today, I read this amazing post about John Robison over at PLoS Blogs. It’s worth taking the time to read every single word of it, truly. But it was this part of Steve Silberman’s interview with John that stopped me cold, made me gasp with recognition, made me stop–for today, at least–wondering and worrying so much about the “fitting in”:
I talked to Temple Grandin about this. I told her, “I’m afraid that when I talk to groups of people with really serious autistic disability, they’re going to think I’m a fake autistic person, because I can talk so well.” Temple said, “No one with autism is ever going call you a fake autistic person. People with autism are like dogs in the park — they absolutely positively know what’s a dog and what’s a cat. A German shepherd can come up to a dachshund and he will never mistake a dachshund for a cat.” And that turned out to be true for me.
So many times, I’ve seen it in myself going the other way. All these people come up to me at booksignings and stuff and I say, “Ah, I see you’re a fellow Aspergian,” and they say, “How do you know?” And I say, “You know, I don’t know.” Sometimes they’re insulted, because they worked so hard in school, and they look so good, and they have friends and stuff. They’re almost insulted that I picked it out. But I don’t always know what it is about them.
Whether he’s Asperger’s or PDD or even something else along the spectrum–something not quite clearly articulated in any DSM or even in my own mind–my kid knows he’s a dog, and can find the other dogs to play with.
Nobody is going to kick him out of the dog park for being a chihuahua even if most of the other pups around are terriers and retrievers. I need to stop worrying about it, and just let him play.
A version of this essay was previously published on www.ihavethings.blogspot.com