Saturday, June 14, 2008

The earlier the better?

I was reading a New Scientist article on autism today. I think I may have commented on this one when it first came out. It made the rounds of the blogosphere, in part because it had a side bar on neurodiversity. I just happened to read it this morning again, in the print version, because I have been insanely busy for the past six months and, as result I have a stack of New Scientists, and Economists and Grantas sitting there waiting to be read, and this is one of the first weekends when I have been able to spend the morning reading instead of working.

Anywhoo, the gist of the article is that kids are getting autism DXes earlier and earlier and therapists are reporting more good outcomes as a result. That's all very well and good. I'm all for getting people all the education they need as soon as possible. But it makes me wonder.

In the not to distant past (like, say, last year) the conventional wisdom was take a wait and see attitude to developmental difference. That meant that some kids who might have benefited from early intervention didn't get it. But I am sure that, in many cases, after waiting and seeing, it turned out that the kids were fine and they bumped along without anything particularly special being done for them. (If such outcomes were not commonplace, doctors would not have been taking a wait and see approach.)

Now, if people aren't waiting and seeing anymore, and kids are getting the intervention as soon as they show signs of deviance, is it surprising that many of these kids have "good outcomes"? Say you've got 100 one-year-old kids in 1980, and ten of them seem odd. When these kids are six, let's say two of them are autistic. So they try some intervention and, at age ten, they are still autistic. Now, in 2003, you 100 one-year-old kids, and ten of them seem odd. You give them all intervention. Five years later, the kids are six years old and it turns out that two are autistic. The only difference is that the therapists tell us that, because we started early, eight of the kids had remarkably good outcomes. Yay!

I'm not saying that is the only thing that is going on, but I bet it counts for some of it.

This would not be an issue if it were not for the catastrophizing of autism. I'm all for docs and other folks monitoring child development and offering supports where it seems they could be useful. But once they stick the autism label on, they are likely to jump right into 40 hours a week of ABA and who knows what kind of other stuff. I'm not sure that's such a great idea.

I guess I will never know how things would have turned out it we had started with massive interventions when MK was a toddler. Maybe he'd be even more wonderful than he is now. Maybe he'd be even happier and comfortable about his place in the world. Maybe. But I can't help thinking that normal childhoods carry some advantages too.

And MK is autistic. He's had a bazillion hours of interventions one way or another, anyway. If the kid in question were not even autistic, just developing at their own pace, it would seem even more odd to take them away from time that could have been profitably spent crawling around the living room and viewing the world from the back of a supermarket trolley.

I don't know if I'm making any sense. Maybe I'm just rambling, in celebration of the fact that I have time to do so for once.


Ivar T said...

I very much wonder what learning to know autism before knowing one's children has to say about parents' relation to the fact that their children are autistic.

I made a similar thread on the Aspies for freedom forum:


Marla said...

I do get what you are saying here and have had similar thoughts myself. It is all so confusing. Our case is unique too since M has a rare chromosome disorder in addition. I still do wish more people would have genetic testing done. I think that would give us all more answers and maybe stop all the endless talk on vaccines.

Normal childhoods do have a lot of bonuses. I agree! We decided against ABA, against endless therapies and I don't regret that.

VAB said...

We did a raft of genetic and other medical testing as part of the diagnosis. It all came up negative.