Wednesday, September 03, 2008

The Social Value of Demand Avoidance

I read a great book called The Wind Singer. In this book, a set of twins live in a very regimented, controlling walled city called Aramanth. One of them, a girl named Kestrel, is one of the story characters I've identified with the most. She is very idealistic, passionate, and stubborn. She is demand avoidant, though I wouldn't say she has the clinical syndrome characterized by that, because she's not autistic enough.
Anyway, no one in Aramanth is really happy, or at least not as much as they would be in a freer society. But most people can cope. Kestrel, however, can't cope, can't accomodate herself to her environment, so she's the one who changes it.
I'm not sure who it was, but someone once said that "The reasonable man accomodates himself to society, but the unreasonable man expects society to accomodate to him. Therefore, all progress depends on the unreasonable man." The way I see it, demand avoidant people are the 'unreasonable' people in that saying. We're like the canary in the coal mine - the same unpleasant things that others can tolerate are intolerable to us. Teachers with rigid ideas, rigid lesson plans, rigid teaching styles aren't really good teachers for most kids, but they are terrible teachers for demand avoidant kids.
I remember thinking about one girl I know with Rett Syndrome that she might in some ways be better off if she had meltdowns. Because she really needed to know what was expected - if she didn't know, she was confused and functioned much more poorly. But that's not that overtly unpleasant to other people or disruptive to the system she was in, and it was easy to confuse that with her disability. Whereas another girl I worked with, who screamed, self-injured and bit people when her routine was changed - well, everyone working for her made sure to keep a regular routine going, because they couldn't handle her like that. (Of course, in other ways the Rett girl was better off not acting like that - she didn't get hurt, she was probably less upset, and her helpers didn't get scared of her. Also, she was exposed to more things, some of which she couldn't necessarily handle, but some of which was educational or enjoyable in various ways.)
As for demand avoidant autistics, a good example is ABA. Most autistic self-advocates are either opposed to ABA in general, or at very least opposed to most/all ABA programs actually in operation. On Youtube, there are a lot of videos of autistic kids getting ABA, and seldom do those kids seem happy. They seem to be putting up with something unpleasant in exchange for a reward. ABA is all about the child accomodating other people, with no recognition that the child needs to be accomodated by others as well. And the ABA-treated autistics I've met all seem to have very low self-esteem (either that, or they used to and have recovered).
Now, most autistic kids can tolerate ABA, and make progress in an ABA program. Demand avoidant kids aren't like that. I've written elsewhere about how I would have acted in an ABA program, based on my behavior in a controlling school - this is typical of children with the subtype of autism defined by demand avoidance. And because of that, the advice about educating kids like me strongly discourages the use of ABA. I heard one parent say that she wished this syndrome wasn't considered an autism spectrum condition because the standard autism treatments don't work on these kids - I say, based on my experience with autistic kids of all kinds, that the methods that work well with kids like me also work well (with adaptation of course) with all sorts of autistic kids. And with none of the ethical issues of ABA.
Which brings me to my last point. Demand avoidance has a social value in sending the message that there is a problem here. But one danger is that the demand avoidant kid will be treated as an exception, and get what they need, without any benefit to the rest of the children who have a less obvious need for the same treatment. Just because a child doesn't absolutely need a certain environment doesn't mean they won't be better off in that environment. It's like if you saw the canaries in the coal mine having trouble breathing and just said "Oh, canaries need better air than this" without taking into account that the same air is harming the miners to a milder degree. We need to listen to the messages that these 'canaries in the coal mine' are sending.

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Blogger Adelaide Dupont said...

About the reasonable man: George Bernard Shaw said the quote you gave.

12:47 AM  
Blogger Lindsay said...

Nice post, Ettina.

I think you're absolutely right that demand avoidance can be really valuable to a group. Besides the "canary in the coal mine" effect, I think it could also help the group be more moral. It's long been established that the desire to fit in with the group, not make waves, etc. is a big factor in people's collaboration with torture and oppression (writ large or small: I think the same desire to avoid disrupting the social order leads people to avoid intervening in cases of schoolyard bullying and domestic violence). This isn't the sole factor, to be sure --- a lot of it is just power. Most people probably won't confront a violent and angry person because they are reasonably afraid they will lose the fight and be hurt, and most people wouldn't defy a fascist government because they might be "disappeared." But I think this drive to please other people makes it easier for the bullies to get their way; everyone else is *already* predisposed not to confront them. I think this is particularly true when the bully is an institution or authority figure; even when he/she/it is blatantly abusing power and doing unethical, illegal things, people are reluctant to take action against it, because such action is inherently disruptive of the social order. Demand avoidance, to me, is hardly pathological so much as it is a valuable corrective to a cultural tendency toward unthinking obedience and conformity.

8:36 PM  
Blogger Unknown said...

Very interesting an poignant post. As a demand avoidant individual I have to say it was comforting to read as I have always felt guilty about unintentionally "making waves" and to know that at times it could be doing good, or going towards doing good, alleviates the guilt somewhat.

11:04 AM  

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