So over on the Asperger’s Support Network page on facebook, someone asked a question:
How do you determine what behavior is due to Aspergers and what is not?
Turns out I wanted to answer this question in a blog post, as a comment on a facebook post just wasn’t good enough for me. Actually, the way I first read this question was “what behaviors are due to Aspergers?”
My answer to that one is “all of them and none of them.”
This question worries me. They are always presented without context, unless the anonymous asker included context in their question – which they usually don’t. This one, of course, also did not. So I don’t know who asked or why they want to know or if there is any particular behavior they are worried about. If there is, obviously I am not sufficiently informed to answer.
However, as to behaviors in general… well, here’s the thing. Autism is pervasive. I can’t really put my different behaviors into neat little piles and say “these are the autism behaviors” any more than I can have “female behaviors.” My behaviors are simply my behaviors. Asperger’s syndrome affects everything I do, all the time.
What I really want to say to questions like this is – don’t. What is the purpose of saying “this behavior is due to Aspergers?” What are you hoping to accomplish? Ultimately, I cannot imagine a good reason to do this, and I can think a whole lot of reasons not to.
Before I go rambling away more, I just want to make my point really clear – never, ever, write off a behavior as simply “part of autism.” Never.
I imagine this topic has been coming up a lot since that article about Peter Lanza (Adam Lanza’s father) came out. The writer spent quite some time interviewing Peter Lanza, and wrote a lengthy, rather sad, article about his perspective. There was one bit that is particularly relevant here:
Peter and Nancy were confident enough in the Asperger’s diagnosis that they didn’t look for other explanations for Adam’s behavior. In that sense, Asperger’s may have distracted them from whatever else was amiss.
As I’ve said really quite often by now, I am a fan of labels. Having words empowers me, gives me direction and coherence that I might otherwise lack. The word “Asperger’s” drastically improved my life. Knowing what’s going on, being able to have a handle on it, having a WORD, that was amazing to me. IS amazing to me. Yet sometimes people respond to labels in troubling ways. Ways that show a lack of insight, of this “theory of mind” thing that allistic people like to criticize us about so much.
Sometimes, some people will see a label and just stop there. An anomalous behavior will be attributed to the label, they will simply say “well, people with [label] just do that sometimes.” and not look further. It’s why Landon Bryce of Thautcast fears “wandering” becoming a diagnosis. Because yes, sometimes autistic children wander, but it’s important to look at why. It’s important to not just write it off as something autistic children do. Sometimes the wandering is, in fact, a matter of self-protection. Of getting away from painful circumstances, whether those circumstances consist of a painful noise, or sensory overload, or gay reparative therapy, or abuse. If we get to the label and stop there, we can’t find out if there’s more there.
A diary of a mom wrote about the same issue. About a child who banged his head in a desperate attempt to cope with constant pain, and no one looked into it because “autistic children do that.”
If a child withdraws, you can’t say “that’s just autism.”
If a child is hurting themself, you can’t say “that’s just autism.”
If a child wanders off, you can’t say “that’s just autism.”
It is SO IMPORTANT to look at why. And yeah, maybe sometimes there won’t be much of a why. I regularly get distracted by shiny things, to the point that Nee tries to keep me in sight when we’re out and about, because he’s never sure when I’ll suddenly feel an intense need to study some random thing. Yeah, it happens. But it also happens that sometimes people need to get away from something that hurts them. Sometimes an autistic child may not be able to say “that hurts!” in any way other than getting away from it. I am quite sure the same is true for some autistic adults. We don’t always have words, and when we do we can’t always use them in the way people think we should.
NEVER stop at the label. NEVER say “that’s just Asperger’s.”
Oh, and please don’t try to split me apart into “asperger’s parts” and “non-asperger’s parts.” Asperger’s is throughout me. I may not be a coherent whole, but it isn’t Asperger’s that divides me.