Friday, August 17, 2001

Specialist roulette

One of the side effects of reading too much about your children's neurological problems is that you start diagnosing everyone else's children as well.

It's hard to resist, filled as you are with knowledge and perception. I remember working at the school library a couple of years ago and picking out the kids with sensory integration disorder. They were usually the ones who were in trouble for not keeping their seats, or for jostling other kids. One little girl kept slipping out of her shoes, and that seemed to me such incontravertable evidence of tactile hypersensitivity that I bristled when the librarian yelled at her, which she did a lot. Nothing I could do about any of this, of course. As a library parent, I was supposed to notice nothing. But boy, I felt smart.

Of course, what I see in other kids are the things I know best. Other parents see other things entirely. I've notice this numerous times on e-mail lists for adoptive parents, when somebody will describe their child's behavior problems, and everybody will chip in with a theory. Invariably, the parents of RAD children will see RAD, the parents of kids with ADHD will see ADHD, and all the while I'll be clucking that it is so obviously FAS/E or SI. We see what we're trained to see.

Which is why I suppose I have to give doctors a pass when they do the same thing. I was a little irate recently when somebody shared the story of taking her child to a doctor who had diagnosed thousands of cases of a certain disorder and, what a surprise!, he diagnosed her child with it, too. And I thought, what I want to know is, not how many cases he's diagnosed, but how many patients he has not diagnosed that in. It seems the problem with specialists is by the time you get to them, you're pretty much guaranteed that they're going to find the thing they find. RAD specialists will find RAD. International adoption specialists will find problems related to international adoption. ADHD experts will see ADHD.

Part of that is probably statistical; you don’t go to those specialists unless there’s already a good suspicion that something in their area of expertise is wrong. And part of that is probably due to the extreme nebulousness of some of these disorders, in which so many symptoms and behaviors overlap. There will always be interpretation involved. And to interpret things in a way you understand is only human nature.

But none of that is much comfort to people seeking definitive answers, or to the people second-guessing them. Perhaps we should consider specialist doctors, and specialist parents, as a sort of diagnostic salad bar. Check each one out, try out a little of each, and put something together that looks right to you.

Then write me, and tell me what you figured out. And I’ll explain why it’s really sensory integration disorder or fetal alcohol effects. I see it all the time.

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