April 4, 2004

  • 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?

Comments (8)

  • I find that with all the disability groups I work with and am part of, those on what I call the "Attention Spectrum" (from extreme ADHD -me- on one end to AS over there and Autism far off the other way) are the hardest to get any actual empathy going for. The easiest are physical/mobility (people see and respond), also sensory (hearing/vision) the whole Helen Keller thing, it's obvious. Severe learning disabilities (again-me) are unknown to educators who've always done well in school and that's bad, but on the Attention Spectrum there's this pure focus on "fixing people" mostly I suspect so that others will feel better. Parents of kids on this spectrum are desperate. With ADHD they start to genuinely hate their kids, then feel guilty. The other way they feel abandoned emotionally by their kids, then feel angry. Because they're desperate they'll listen to anything. Put their faith in anything. They fall victim to scam after scam. And yes, ask for heroism as if people weren't trying with everything they had in the first place.

    The two comments I have learned to hate most in my life are "life is unfair" and "I think you're really courageous." Of course it is. Of course I'm not.

  • It makes sense to me.

    I know nothing about AS (this is the first time I've heard of it).

    You're right about the parents buying into these stories. It's such a heart-wrencher to parent a child w/ a known challenge and unknown answers.

  • I'm not one to hold back. I'm sure if it was ME on that mailing list, I would find a tactful way to introduce myself and explain the "Fuck the Agendas" idea in a mother-friendly way.

  • This is so interesting. I feel much the same way about ADHD. I finally dropped off all the lists I was on because people have so much invested in believing what they're told by established authorities on the subject. Most list members are completely closed off to seeing anything differently, or questioning the status quo.

    I'd like to hear more about how people are "getting it all wrong." I'm part of the choir. Preach. Why do you say, "Fuck heroism"?

    Feeling uncomfortable jumping into conversation, that's the story of my life.

  • I don't want to jump in on Homer's site but here's why I want to say "fuck heroism." To me this is survival. I do what I need to do to keep my head above water. It sucks and I'm always uncomfortable. Heroism to me is about choices. You do stuff you don't have to do because it makes a difference for others. I don't have those kinds of choices, except to fight it or not. I don't want to called a hero. I don't want to be "the star retard" anymore. I just want a little empathy, a little understanding, and acceptance would be something wonderful. Like I said, don't tell me "life is unfair." duh. Don't tell me I'm a hero because I'm not. And don't tell me to try harder because you have no fucking idea. (well, you and Homer do, but you know what I mean)

  • that's the best reasoning i've heard, narrator.  you gotta do what you gotta do to get through life.  and parents have to do what they have to do to get their kids to adulthood. 

  • thenarattor says: "on the Attention Spectrum there's this pure focus on "fixing people" mostly I suspect so that others will feel better"

    It reminds me of a quote by C.S. Lewis: "Of all tyrannies a the tyranny exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satisfied; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience."

  • those parents are often a big problem. i know, cause i have two of them, who have an autistic kid. not me, but my brother. he was born 26 years ago, when i was 2.5. ever since, they are pretty fucked up, both of them. the problem is, i think parents, at least mine but maybe all, can never accept their kid has a dissabilaty. they know, and they sort of accept, but they never really will be able to accept. for me, he is the one who is my brother, the way he always has been. this is what a brother is to me, and i love him. they can't see it that way. they have their unfullfilled expectations, and worries of course. as a result, my father tends to overestemate is possibilities, and my mother underestimates them. and me? well i am not sure off course; he can't speak, only knows some signlanguage and written language, and almost everything is to abstract for him, but i grew up with him, and i just know who he is and what he can and cannot do.
    leaves us the question: what to do with the parents? trial and error, i am afraid.

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