10 thoughts on “Disorder, or Identity?

  1. Honestly, I think this article is really disingenuous and mischaracterizes the neurodiversity movement deliberately. The whole “there are people who think we shouldn’t give our child any therapies, OMG!!” thing really made my hackles rise–I don’t know ANY neurodiversity advocates who say that. I think it’s extremely dangerous to let that particular characterization of the debate (and there is a debate–and a far more valid one than that article presents) pass unchallenged. I’m frankly a bit surprised that you, who know neurodiversity advocates and kind of ARE one, would take part in disseminating that article through the blogosphere. I think you’re wonderful, but rather find myself wishing you’d explain.

  2. I will! I just don’t have any time. I agree with you that it is far from a perfect article.

    Something else though, is that I’m so very sheltered. I don’t have to fight for school services for Bede because we homeschool. I don’t have to deal with family second-guessing us because the family that knows Bede knows this is the very best thing for him. So I have a naive innocent sort of view too, yk? I’m an idealist, and it colors my thoughts. I’m not sure if that’s relevant, but I thought I’d mention it.

    I’ll re-read it and try to give a solid critique. Mostly what I enjoyed about the article was how it even described the neurodiversity movement at all and I came away from it with the feeling that the author had re-evaluated her daughter in a much more realistic and respectful light.

    But let me read it again and address exactly what you’re getting at. I also think it reflects the growing conflict between neurodiverse adults and the parents of neurodiverse children. I’m still feeling my way, and I have made huge mis-steps before, but mercifully only in thought, not deed.

    OK, I have houseguests, I have to run.

    PS I think you’re wonderful too 🙂

  3. Actually, i’ve read several articles from people who say NO therapy, and even met one in real life once. It was awkward. As Phoebe said, there is sometimes a discrepancy between what adults on the spectrum want, and what is helpful for our kids. In the end though, we as parents are responsible for our children, and while I hope that parents address their children with respect to wants and needs, it’s much more appropriate to provide therapy they resent later, than to NOT do it.

    I think that this segment sums up what the author is saying
    “As much as I believe in self-determination—the right to be different—for adults with cognitive disabilities, it may be unrealistic to ask parents of severely impaired kids to refrain from trying to “fix” them. But lowering barriers? There’s a battle cry that parents and self-advocates should be able to all get behind. If you can just keep a kid going, helping her over the rough patches, giving extra help where it’s needed, and seizing on anything that looks like a strength or a competence—okay, a gift—that kid might surprise you one day. ”

    I have a child who used to peel the skin off of her feet…leaving bloody footprints. There is one adult on the aspergia.com website who said first that she had the right to do that, and then blamed ME for it happening. With OT, we were able to get her to a comfortable place, work on replacing that behavior with one that is not only more socially acceptable but also more safe for her. But several adults on the freedom website proclaim that therapy is like genocide….we’re getting rid of autistic traits.

  4. If we’re quoting people, I want to quote Riel-of-Amorpha’s response to the blog entry I posted, which is far more to the point about what I was saying:

    As far as a lot of us can tell, supremacist types (and, really, any kind of “out-there” view, from improbable conspiracy theories to people who insist that all labels and categories are meaningless) tend to be used as the “roadblocks” for people who are actually asking for true equality. Equating such people with extreme ideologues, or classifying them as a “less extreme” extension of the same viewpoint, is a convenient justification for not listening to anything that the people talking about equality are really saying.

    And as I said, the ideologies that are being quoted alongside quotations of things I write are not extreme versions of my own view. They’re not my view. And my view is not taken from some combination of your view and their view. My view — along with the views of most of the autistic self-advocates who’ve actually been around for awhile — has nothing to do with this. Totally different framework for viewing the world.

    And it’s prejudice, what’s happening here. I doubt it’s on purpose but it’s certainly problematic.

    It’s the same kind of prejudice that causes some people to refer to feminists as “man-haters”.

    And then if you try to explain that’s not what feminism was (or is) about, you hear “but there really are these man-hating women out there, don’t you know?”

    And therefore nobody has to listen to any feminists who don’t hate men (which is by the way most feminists of most kinds, of which there are many).

    Being told “But there really are these people” is like telling a feminist who is trying to discuss building battered women’s shelters, that she’s somehow associated with “man-haters” who “really do exist out there you know”.

    So no. I’m sorry. What I have to say has nothing to do with the sort of people who want people to self-injure. What I do have to say is discussed in the post I wrote.

    It’s not my position.

    It’s not Jim Sinclair’s position.

    It’s not Michelle Dawson’s position.

    And it seems as if people aren’t even bothering to find out what our positions are, and what actual ideas and experiences they’re rooted in.

    It’s easy to caricature Jim Sinclair as saying that parents want their children dead, but that’s not what he’s saying.

    It’s easy to caricature Michelle Dawson as not wanting children to get help, but that’s not what she’s saying.

    It’s easy to caricature me as… I don’t know, every form of evil-sounding autistic self-advocate there is probably, but it’s not what I’m saying.

    And it’s easy to caricature all of us as just “resenting treatment later”. Which is so completely untrue and unfair a thing to say that I don’t even know how to begin with it. I suppose I can only point to a couple of posts:

    What Not Changing Us Means

    Many Ways to Do the Right Thing

    Is this really neutral, everyday terminology?

    The Roadmap That Didn’t Exist in the First Place

    A couple handy lists for dismissing autistic viewpoints

    Sorry for spamming with so many links, but I figured it was better than spamming with all the text. I don’t even know how to begin to describe a worldview that has nothing to do with medicalizing every aspect of my learning that happens to differ from other people’s (and yes I don’t consider self-injury particularly medical, I also don’t consider it particularly good), and also has nothing to do with the truly awful caricatures I saw in the article (and yes I know “some people are like that” but some people are like anything, and the people who’ve been at the core of the autistic liberation movement have not been like that at all).

  5. Thanks Amanda. Your comment was in spam because of all the links – I didn’t want you to think I was considering not posting it or something. I just saw it, and posted it.

  6. Amanda
    I appreciate what you are saying. You don’t know me personally, so I understand that you cannot read between the lines and in my head (darn the luck 😉 It doesn’t help that I have trouble with communications myself) I have been VERY active in advocating for my two children with autism, and I thought that the article was not THAT bad…it’s a good article for mainstream parents who have never heard of autism advocacy. I, like Fee, appreciated that the author was able to reevaluate her position on therapy for her child, and instead of ‘fixing’ her handwriting, was able to consider how else to provide supports to encourage her daughters nonverbal communication.

    My post was responding to Hala who said she didn’t know any one who was a proponent of the ‘no therapy’ regime and by stating that, it diminishes the very difficult position we are in, facing criticism from those who think we don’t do enough therapy, and those who have said precisely that I have absolutely no right to teach my child how to speak. Never mind that she has been learning and is quite happy to do it. It may not be the position of all the people that you listed, but it is very real, and it is part of the discussion.

  7. if our culture embraced our all of our differences with the same compassion and understanding as this article presents, what a wonderful place it would be.


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