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10:45am January 19, 2012

Functioning levels part 1

Okay I’m feeling really lousy right now so I may not be able to take on this subject all at once. But I’ll try to post as much as I can even if I can’t get to it all today. Someone (sorry I can be bad at figuring out and remembering people’s names online) was talking about how they’re not sure functioning level is bad.

They also said they understand why people have problems with it. That may or may not be true. Different people have different problems with it. Some of those problems may be more important than others. I’m going to try to limit myself to more or less one problem per post on the subject unless I just can’t disentangle them.

To my knowledge, I’ve been one of the earlier and more vocal autistic people publicly objecting to functioning labels. For a lot of reasons. And recently I’ve twice gotten to co-present on the topic with Morton Gernsbacher. Morton is a researcher, former president of the Association for Psychological Science, and knows way more about science than I ever will. And she’s putting that knowledge to good use, debunking stuff autistic people have been skeptical of for a long time but few of us able to prove in ways researchers will listen to.

She handled the scientific aspects of our presentation. And she gave evidence I wish I had the citations for on hand but I’m working on my iPod here.

The person I’m replying to said that functioning level is basically severity. And that you can only really measure severity by outward behavior. Morton agreed about the outward behavior part.

So she looked up information about the people with the largest numbers of autistic behavior, the only measure we have of severity right now. And the children with the largest numbers of autistic behaviors, turned into the people with the “best” outcomes. Best being defined of course by functioning in a nonautistic society.

Let me say that again so it doesn’t get lost among all the other text: As far as we know the most severely autistic people are in general the ones who function the best in a nonautistic world.

And it comes to mind that we don’t even know what autism is. We don’t even know if it’s one thing. How can we possibly know who is the most severe if we don’t even know what we are measuring? And when we try to find a way to measure it by behavior, we get results like this that fly in the face of all “common knowledge” about what autism means. Could it be that being extremely autistic comes with abilities that are useful in all kinds of ways? Nobody knows, but at least some people are asking the questions.

So, no. There is nothing straightforward and logical to the average person about dividing us up by severity. What most people call severity, and actual measures of which people show the most autistic behavior, are clearly two entirely different things. And there is much less scientific justification for functioning levels in autism than most people are aware of. What I’ve just described is only the most memorable-to-me piece of evidence that Morton talked about.

Morton is a source of all kinds of information about how everything most people think they know about autism is completely wrong. For more such information, go to her autism research page.