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.)