Michelle Dawson in the news

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Here is a link to the news story. It seems to better represent her point of view than a lot of things do, but she said the personal experience stuff made her cringe.

Which makes sense. She is a researcher. Her knowledge comes among other things from an encyclopedic knowledge of articles regarding autism. She does not do research entirely from her own personal experiences, she does research based on the rest of the science out there.

Similarly, when autistic people try to advocate politically, it’s very common for people to ask or even demand that we stick to telling our own stories. The idea is that, even if a person has known a whole lot of autistic people, even if a person has studied disability politically and been active in any of a number of disability rights movements, all they’re talking about is still their own experience, we’re simply not allowed to talk about things beyond ourselves, and even when people do print our actual ideas rather than just our own personal stories, they often seem more interested in our personal stories than anything else.

Meanwhile, somehow parents and professionals are not held to this standard so much. They aren’t as often told, “But you are a parent to only one autistic child, so don’t give your views on autism in general, because you’d just be generalizing from your own personal experiences. Stick to telling your personal stories and avoid voicing opinions.” Yet that is exactly what autistic people are always told. It’s an interesting double-standard, there.

(See also Joel’s blog entry, You can be an autistic or a professional, not both! And note that I’m not saying it’s wrong to talk about our personal experiences — otherwise I wouldn’t do it all the time — but it becomes a problem when it’s not only all we’re expected to do, but in some people’s eyes, all we should be allowed to do.)

And, because I don’t know where else to stick this, a bit of a personal update: I’m already feeling a bit better. I don’t know how much of that is:

1. Because, thanks to my mother coming out tomorrow, I won’t have to worry so much about who can provide more assistance than I usually need, and don’t have to think so much in general. (Thinking can aggravate pain if the pain is bad enough and the thinking is hard enough.)

2. Because I’ve been switched from Neurontin to a combination of Lyrica and Trileptal.

3. Because elements of the nerve treatments I received yesterday are already working.

4. Because now that the treatment is over, I am allowed to resume the other two pain meds I was taking before.

But basically, the pain is still there, and still in the severe range, but not so much in the hellishly severe range. Which I’m taking as promising. My head is also a bit fuzzy, but I’m imagining that is from switching from 2400 mg of Neurontin a day, to the equivalent of 3600 mg of Neurontin a day (actually it’s 600 mg of Lyrica a day, which is I guess 6 times as potent as Neurontin), and adding Trileptal into the mix. (I hope Trileptal has eliminated the weird side-effect that its close relative Tegretol has, which is messing up a person’s sense of pitch. I don’t need the entire world to sound off-key. But the idea of, if I tolerate it, actually being on a combination of seizure drugs instead of one drug that’s supposed to be used only as adjunct therapy with another one, sounds promising in areas beyond pain control, and even might help with pain control indirectly since some of the meds I’m on lower the seizure threshold.)

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

20 responses »

  1. Trileptal didn’t mess with my pitch sense FWIW. It made my sense of BALANCE nonexistant though (like, danger to self non existant). I’ve found low dose combination therapy fairly effective (multiply the issues at autcom by about 50 for 1 drug treatment).

    I REALLY hope it works out for you. It’s about time you got some lasting relief.

  2. During the 19th century slavery debates, the same thing often happened with ex-slaves. White abolitionists often insisted that they stick to telling their own stories, and leave the theorizing to the whites.

  3. Thanks for the link. I thought it was a good story, though I can also sympathize with Michelle Dawson – it’s weird to see how a story you cooperated with comes at things from a different angle and throws in personal stuff that may seem off base. Still, for me it was a really accessible account of how advocacy that uses denigrating and hurtful characterizations flies in the face of real understanding and acceptance. So I appreciate your pointing it out and for your take on who gets to participate in the debate. This actually bears thinking about for other kinds of advocacy too – very interesting.

    Glad you’re feeling a bit better. Hope things continue to improve.

  4. Glad you’re feeling better – hope you feel even better soon.
    I’ve read a bunch of Michelle Dawson’s stuff on autism. It is notably different from most autism research in that I have to do much less of the brain-twisting I normally do to understand the results – with most studies, I instinctively reject the conclusion, then must figure out exactly how they misinterpreted the results and come up with my own conclusions. I do think if you’re an autistic researcher, you have an advantage in researching autism just like NTs do in researching neurotypicality, because I can really tell that one of the contributors is autistic when reading articles co-written by Michelle Dawson.

  5. It’s already making me really drowsy and out of it and dizzy, but Neurontin used to do that whenever I raised my dose, and then I’d end up feeling better after a few weeks, so for now I’m hoping it’s temporary.

  6. As a deaf person, when I read materials about the culturally Deaf community, I can often tell when the author is Deaf vs. hearing, or even a hearing person who has gained most of their knowledge directly from Deaf people or a hearing person who has gained most of their knowledge through more indirect sources without really talking with Deaf people. This has sometimes been in cases where I didn’t have a way to know the author’s background in advance–I only learn about it by reading the author’s note or whatever AFTERwards. (Best case example of this was when I read Oliver Sack’s book on the Deaf community–I forget the name of the book, but I just *knew* from the way he wrote certain things that, although much of his understanding of the Deaf community was coming from pretty knowledgeable sources, it was still not coming directly from Deaf people themselves. Then I read afterwards that he had, indeed, spoken with a lot of hearing people at Gallaudet University and I think other places — people who indeed would be very knowledgeable because thy’re pretty immersed in the Deaf community–but he didn’t, in fact, interview Deaf people, I think because he saw the language as a barrier or something.)

    I think any time you have a significant difference in how you experience life, there are certain things that are going to be quite obvious to you that someone who hasn’t shared those experiences usually are not going to grasp unless they’re specifically taught. Even then, they may need to overcome internalized assumptions that stand in their way first.

    From what I’ve gathered, many researchers are still stuck in the “have not yet realized they have assumptions that need to be overcome” stage, and only a few have moved through the “overcoming …” to the stage where they can actually start overcoming their mind blindness (oh, wait, that was supposed to be an autistic thing) so they can work things out from something closer to the autistic perspective.

    To Amanda: good luck, and hope the dizziness and drowsiness do in fact go away.

  7. Re: the meds, I’m noticing that with Trileptal and Lyrica the pain that used to be all over my body is virtually gone, something that’s never happened since I was on a Depakote/Neurontin combination as a teenager. (Depakote and I do not get along at all.)

  8. I’m glad to hear the pain is become slightly less torturous. I hope the treatments continue to improve the situation.

    I LOVE the article about Michelle. I’m sure it’s not perfect, but it seems to be the best one so far.

  9. I really want to know *how* you’re supposed to tell your own story without voicing an opinion, since often when you even just try to say “the so-called ‘help’ I got was horrible,” you’re accused of expressing a biased opinion. Since apparently it’s so unobjective to voice the opinion that something screwed up your life, even in cases when people who were around you at the time can attest to the effect it had on you. Apparently the only “objective” opinion is to “accept that people were trying to help” and only ever speak of them in positive terms, or something. (“As soon as you understand that we’re actually helping you for your own good, then that means you’re getting better.”)

    You also simultaneously get told to “stick to telling your own story,” and told that your own story doesn’t matter because it’s “just the experience of one person, and very atypical.” (Of course, whether you get told that your story is “atypical” and therefore shouldn’t be listened to or taken seriously depends completely on whether you’re saying what they want. If you’re talking about how therapy/drugs/ABA/integration/being locked up/whatever didn’t help you, you get told to shut up because your case is “not representative of the norm,” while no one who talks about how wonderful these things are is ever told to shut up because they’re just one person and their testimony is inadmissible, they’re held up as being somehow the normal or typical case for some reason.)

  10. Amanda: Yeah. I don’t really understand why Oliver Sacks didn’t do that. It was a lost opportunity on his part, for him as well as his readers. And I think it set a bad example for such a well known and usually highly-regarded researcher like him to depend so heavily on “outsiders” to understand a community that was new to him.

  11. Amanda,

    Could you please give me more information on ABA? I have read several articles by Michelle Dawson, and while I know she is against ABA, I do not really know what it is, how it works, or the detrimental effects it can have on people with autism. TIA (Thanks in advance), and I love your blog!

    P.S. I am also a very sensual/sensitive person (hates loud noises and rough textures on skin, is social when she really wants to be social, has trouble not throwing a fit when people’s cell phones ring during one of her training workshops). So, I could be “on the spectrum” for all I know. My sister has none of these problems, and neither do my parents, so I wonder…

  12. I’m glad you’re feeling so much better.

    I know of a young woman who is retarded and has ADHD and co-ordination problems. She is being made to do some form of “behaviour therapy” which involves punishing herself for arguing by hurting herself with an elastic band.

    She is with a family who frequently humiliate and assault her. She needs to argue.

    What can be done to help her stand up for herself against these people? (FYI: she revealed this on a forum. She lives in the US. I and most of the forum live in the UK.)

    By the way, glad the meds are working.

  13. Trileptal works really well for most folks I’ve seen on it. They describe it as “smoothing” rather than sedating. Like sensory smoothing.

    Also, small amounts of tricyclic antidepressants (elavil, desipramine) also work well for nerve pain, for what it’s worth.

  14. That’s interesting, because I was just commenting to my mom a few hours ago that this combination of meds is making me think more clearly than I had before, even despite all the sedation and dizziness (which are in fact occuring). The only way I could describe it is, prior to this every few seconds my brain would go muddly, and now it’s not doing that anymore.

    I’m already on elavil (been trying it for months) and it’s had no effect on the pain, but a wonderful effect on sleep.

    I’m also noticing that I’m yet again having to sort of remap my body. When I first went on Neurontin (actually, second), the contrast was so much that I had to remap in an even more drastic way, since my whole life had been spent viewing body parts as things that almost always contain an extreme burning sensation.

    This is doing it again. I’ve still got joint pain but so little nerve pain that I keep feeling like my body’s made of rubber or something instead of made of pain, then I realize this isn’t “rubber”, it’s what bodies are supposed to feel like.

    Meanwhile there’s still nerve pain on my face and sometimes the back of my head, but there’s considerably less of it. (Not sure how much is due to the treatment and how much to the meds.)

    I’m also pretty delighted because I’ve rarely met an anti-convulsant I could tolerate. (Interestingly enough, Trileptal is a cousin of Tegretol, which was the first anti-convulsant I was ever given — actually really the first prescription brain-med of any kind I was ever given — and which I rapidly took myself off of because the entire world seemed off-key. But I remember other aspects of Tegretol being more tolerable than, say, Dilantin, Depakote, Topamax, etc. So maybe this isn’t as surprising as I thought.) And I’m also not getting all the little clusters of deja vu, or disorientation, or random spatial layouts flying through my head too fast to tell them apart, or other things that tend to herald seizures, so I guess that’s a good thing too.

  15. Yeah it is. May your recovery continue unimpeded. Dennis shouts MEOW!!!!!!

    long night awake working on a project. Brain fried. Time for zzzzzzz.

    TI

  16. I agree with you completely. Also, when I’m asked to give information about autsim I always make sure to point out that I’m giving second hand information, since I’m not the person who is autistic. I certainly know less about autism than my son does.

    Glad you’re starting to feel better. Hope the upswing continues.

  17. Bodies aren’t made of rubber? This is so totally news to me…

    I’m really glad you’re getting some relief, at last, and hope “remapping” does not equal “cannot move 3 feet without injuring self”. It sounds like not though. YAY!

  18. “You also simultaneously get told to “stick to telling your own story,” and told that your own story doesn’t matter because it’s “just the experience of one person, and very atypical.””

    Of course! They don’t *want* your experience to matter!
    That’s why I included so many quotes in my not-yet-published book School Trauma, to make it abundantly clear that I’m *not* just talking about my own experience.

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