I got to be Mr. Asperger again this week when I was interviewed by a radio station in Kentucky. The interviewer, who had actually taken the time to read the book (of all things), was very good, and asked intelligent questions, but it always worries me when I am asked to be the Spokesman for the Autism Spectrum. I’m just a parent who has to deal with something, that’s all. Doesn’t every parent have to deal with stuff?
My son was diagnosed with Asperger’s Syndrome, which is now considered a high-functioning form of autism, when he was about six years old (he’s now 17). It was the Ice Age of Asperger’s, when almost nobody had heard of it, when we were still being told by psychologists that our son was “eccentric,” and when school administrators, teachers, social workers and specialists were just finding out that there was something out there with a strange German name that might make an impact on the children they saw in class, and maybe they should find out more.
We were lucky to live in a school district (well okay, we had moved here with the schools in mind) that was not averse to differences among students. They were smart enough to explore what Asperger’s was, and early on, to note that this certainly explained students they’d had trouble with in the past, when they were frustrated and didn’t know how to respond.
Now, all school districts should take note: where diagnoses of autism once numbered about one in every 10,000 children, the number has now become one in every 166.
What causes autism and autism-spectrum disorders like AS? Nobody knows for sure, and I certainly can’t say with any authority. There is much debate, and I’m not a doctor. I don’t even play one on television, although I hear that’s a very sexy thing to do these days.
I can’t even say what it’s like to live with Asperger’s. I don’t have it; my son does. I can tell you what it’s like to live with someone who has Asperger’s, and tried to do so in my non-fiction books.
It gets a little uncomfortable when interviewers, readers, or anybody expects me to know all there is to know about all forms of autism. As an author, I don’t want to appear like I haven’t adequately researched my topic, but as a responsible human (which I aspire to be someday) I don’t want to make up information. I’ll often point out my almost criminal lack of credibility on a subject I’ve written about extensively for eight years, but there’s something just a little strange about having to do that.
Here’s what I know: people with autism, from the very high-functioning (boy, do I wish they’d come up with a better term than that–it makes my son sound like he should be spitting out pistons, or something) to the not-so-much, are different. They’re not sick, they’re not damaged, and I don’t believe they’re disabled; they’re different. They approach life in a way that the rest of us do not. I haven’t checked today, but I’m relatively sure that’s still not a crime in this country (although it seems pretty much everything is up for grabs these days).
What is needed is education. For the people with spectrum disorders? Certainly. If they want to fit in with the majority (some do, some don’t), they need to know what the majority expects, and at the very least, how to fake that. So education, from the earliest possible age, is desperately important. That means there need to be more people learning how to teach people who don’t see the world in the way most do, and we need to start doing that roughly 10 years ago, so it’s a priority.
But there also needs to be education for those of us who consider ourselves–and this is a word I shouldn’t be using–“normal.” (In the autism community, “neuro-typical” is the accepted term, and even that is pretty bad.) We need to be able to deal with a population that is growing geometrically by the day. And that means we need to understand where they’re coming from, how they view life, why they act the way they do. Police officers need to know it, teachers need to know it, grocery clerks, principals, deans, firefighters, writers, cable TV installers and virtually everyone else needs to understand.
People with autism and related disorders are not going away, and they’re not going to merely “fit in” because we decide they should. They’re going to be who they are, and if there’s one thing that living with my son for the past 17 years has taught me, it’s that they are very much worth knowing.
That’s why I write about Asperger’s, and autism, and everything in-between. Because if someone who’s reading a silly mystery book and isn’t expecting information about a neurological disorder to be included finds it anyway, maybe they’ll learn something. Maybe they’ll understand better. Maybe, when they meet my son, they’ll cut him just a little bit more slack.
It’s selfish, but it’s worthwhile.
As to ‘normal’, the older I get the more I realize that no one really is. But to your concern about being a spokesperson, it seems to me that the general population does better to get information from a ‘real person’ who has some familiarity with the subject. The newly educated, at whatever level you are willing to share, now know more than they did before hearing you speak or reading what you have written. That can only be a good thing.
Wow, Jeff, what an unbelievably wonderful blog. Once upon a long time ago I taught in a “special school.” Why special? Because the majority of the students were autistic. Way back then, those schools were called “600 schools.” Why 600 schools? Because the NYC Board of Education paid teachers $600 more *a year*!
You said: “I haven’t checked today, but I’m relatively sure that’s still not a crime in this country (although it seems pretty much everything is up for grabs these days).”
Thanks for this post, Jeff.
One of my daughter’s closest friends for three years was a boy with Asbergers. I’m certain his mom had the same condition. Both were brilliant, pretty good one-on-one and really interesting to talk with.
I also know a few people with austism — at varying levels of “functionality.” I have a niece who is 40+ who works and lives by herself (with mucho help) — but, boy, she does it. And, there’s a kid who is the same age as my other daughter. She and he are friends. It’s fascinating to watch how they communicate.
What the hell is that?