There is no typical autism

posted by Jeff | Thursday, September 25, 2014, 10:58 PM | comments: 1

We've met a great many parents of kids on the autism spectrum, as you would expect given school, therapy and community groups. Obviously we're not experts on the subject, and always learning given Simon's challenges. The thing that has surprised me the most is how different every kid is. The course of therapy and education is dramatically different for everyone.

Not only are the therapies different, but so are the range of issues, which is part of the reason that they lump all of these things into a "spectrum." There isn't a lot of awareness around this range unless you're in the middle of it. I'm trying not to react with anger when I hear people say things like, "He seems normal," because the truth is that they just don't know or understand what autism is.

If you're my age, your first exposure to autism is probably the movie Rainman. Later you had people associating it with Aspergers specifically due to the "Jerry" character on Boston Legal. Then you have any number of TV and movie kids, to say nothing of news stories, about kids who don't talk or make eye contact. You know how many of the kids I've met exhibit any of these specific issues? Zero.

In fact, we're very fortunate that Simon is the exact opposite of some of the most stereotypical behaviors. The kid queues like a champ, and is super polite to adults, almost to a fault. He can make eye contact, and be very expressive (if not understood) when he wants to. On the other hand, he plays in the stereotypical ways a lot of the time, organizing and aligning toys instead of using his imagination. He struggles to adhere to directions. He has the classic meltdowns periodically. It's completely strange how no two kids share the same checklist. And if that weren't hard enough, there are varying degrees of the behavior and the ability to modify the behavior.

So sure, Simon seems "normal," and I suspect he will seem so even more if his therapy and IEP are successful. The mystery that is autism includes a lot of circumstances where kids can learn to learn in a way that suits their different wiring. That's the reason it's so important to be proactive.

My displeasure over the "normal" comment (and for the record, the best thing I can come up with is "atypical wiring") might be tempered to an extent if people could just understand that what they perceive is an oversimplification of the reality. I don't think my kid is broken, and by me talking about it, neither should you. I share because despite the uniqueness of every situation, sharing information is what makes this all a little easier for someone.

The takeaway for you should be this: There is no typical autism. It's an enormous range of stuff. It's usually not Rainman. We're not being overbearing or overcautious parents. But it would be a disservice to our child if we didn't do everything we could to address what professionals have identified. He's a beautiful kid, and he's the joy of our lives.



September 26, 2014, 12:24 AM #

3 of my nephews are on the spectrum, and each of them exhibits in strikingly different ways. (Of course, I suspect both of my brothers would have been diagnosed as on the spectrum if we were as aware of such things then as we are now. No comment on myself :) )

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