Monday, February 11, 2013

Ethics, Advocating, and Cures

Lately it seems that there are a number of adult autistics prominently advocating for their rights. The right to be treated as an adult, as a person who should have a say in their own future. Many of them maintain that they are the way they are and that they don't want, or need, a cure. But what strikes me the strongest about this is that they are all very skilled communicators, very articulate and high-functioning autistics who have every right to be appalled when someone suggests that they need to be "fixed." It's as appalling to me as suggesting someone who's gay needs to be cured of their homosexuality.

But then I have a bit of a break in my own thought processes. My daughter, who is 15, doesn't have their abilities. She doesn't have a strong voice to self-advocate or advocate as an autistic person. She's verbal, but mentally about 7 years old (determined through standardized tests, which are themselves flawed, and skewed toward neurotypical brains, allowing little room for variation).

If I can sit here and believe wholeheartedly that Aspies need no cure, don't need to be "fixed," is it wrong for me to want something for my daughter? Not a "cure" necessarily, but something that will enable her to be independent, something that will help her express her voice. I don't want a different child, I want one who isn't frustrated with her inability to voice her own needs. I fear for what will happen to her when we're gone, and all the estate planning in the world won't take that worry away. Someday I won't be here to take care of her...

My husband and I discussed this, and he's of the opinion that it would be irresponsible not to take advantage of a cure if there was one, for the very reason that we won't be around forever. A friend once asked me if we'd tried the GFCF* diet, and I told her we had not. Nearly everything she eats has one or the other in it, and though people maintain that "no child will let themself starve," I don't know that they've ever encountered an autistic child. The strain it would put on all of us would be immense, and the stress is just not worth the experiment, the outcome of which is not even supported by research. Her view was that, if it makes her better, why would you not try it? I replied that I knew my own limitations, and that I could not live with that kind of stress in the house. Is that selfish of me? Or is it merciful? Since I'm unwilling to do it, it's hard to say.

The "experiments" that we've tried in the past include fairly non-invasive things: Epsom salts in the bathwater (for the magnesium) -- had no effect. Zinc supplements -- no effect. Speech and occupational therapy -- helped, but didn't do that much (the socialization she got with the therapists I think helped more than anything). Augmentative communication device (iPad with Touch Chat) -- no effect at home (and little at school). I mostly let her be her. I don't try to squash the rocking or other stimming behaviors, though I will sometimes ask her to be quieter with the humming (quieter, not "stop").

We've never done ABA therapy with her, and some things I've been reading lately (like Quiet Hands) make me grateful for that. My education in was in psychology; behavioral studies are not new to me. Applied Behavior Analysis seeks to use behavioral training techniques to model desirable behavior and eliminate undesirable behavior. It's dog training for people. Which is not to say that behavioral therapies don't work! They do; the question is, are they abusive? Read the Quiet Hands article... even something so simple as forcing someone to stop flapping their hands can be seen as "abuse" particularly when it's hurting no one. So there's another ethical question: Is it wrong to eliminate behaviors that are stereotypically autistic (like flapping, rocking, or humming) when those behaviors act like a release valve for the individual? Is it wrong when some of those stimming behaviors (which are release valves) involve self-injury? Injury to others? Where is the line? I have a scar on the back of my hand from where my daughter scratched me when she was much younger. She was frustrated and angry -- I don't remember why -- and the only way she could express that was to reach out and scratch. She had also done this to herself before, scratching her arms. When she was a little older, and more verbal, it was screaming. Rather than reshape and model other behaviors, I now work very hard to diffuse the stress before it gets to that point.

I'm far from perfect. I've made mistakes and done things that I wish I hadn't, but at the end of the day, I have a child who's pretty happy, healthy and adjusted. Sometimes the stimming behaviors make me a little nutty, but they're not for me. Making her stop doing them is stressful for her, which is in turn, stressful for us.

Where do we draw that line? When do we decide a cure is needed?

*Gluten Free/Casein Free

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