I lurk on a couple Asperger’s Syndrome support email lists. It’s frustrating because I haven’t found one that’s just for adults with AS, so it’s all parents of kids with AS fretting over what to do.
And I always want to pipe up with some advice, like I’m an expert or something. I just read one where a parent went to an ‘AS conference,’ and was reporting back. She was talking about how hard it was to talk about it with her AS kid.
I’ve been to one of those conferences, and while it was informative, it was also like being dissected. All these parents and medical professionals in a hotel banquet hall, and the books for sale on tables around the walls… Hundreds of books. Thousands of books. Books about triumphant parents and heroic children. Just book after book about a triumphant parent and/or a heroic child.
So if you’re a parent and you’re totally lost about what to do with your AS kid, and you go to one of these conferences, then the agenda is that you must become a triumphant parent and your child must become heroic, or something is horribly wrong.
I want to write an AS book called ‘FUCK HEROISM,’ with the subtitle, ‘and fuck your fucking agenda, too.’ I don’t think it would be widely received, beyond the choir I’d be preaching to.
But can you imagine if I were to pipe up on the support group email list, totally out of the blue, and say this shit? It’d be akin to showing up on a cancer group and saying, “Fuckit, we’re all going to die anyway.” It wouldn’t be untrue, just.. perhaps.. not exactly what anyone went there to hear.
Anyway. So there’s that woman who went to the conference, and I want to tell her to read all those triumphant/heroic books, but read them as if they were insulting her intelligence. Glean facts, but distrust the agenda. Don’t assume you know what AS is, what it means, where it comes from, or how much of your kid’s identity should be labeled as a ‘disorder.’ Read ‘Diagnosing Jefferson’ and that same author’s other book where he diagnoses everyone from Einstein to Abe Lincoln with AS.
The reason her kid doesn’t like to talk about it is because he doesn’t know how to tell her that she’s getting it all wrong, and she’s getting it all wrong. Pushing the issue leads to overstimulation, and that’s what he’s trying to avoid.
I want to tell her all these things, but it’s the nature of my disorder that I feel uncomfortable jumping into the conversation, even if it’s just an email list, and I have as much right to post there as anyone else. I have her answer, but I’m chicken. Isn’t that completely fucked up?