Science and Stigma

There were a couple interesting stories in the news this week that caught my attention. First, as I understand it, Asperger’s syndrome is no longer something doctor’s will diagnose. It’s now part of the autism spectrum, at least as far as the DSM is concerned. You can hear more about it in this NPR piece. 

Second, scientists have discovered a genetic basis for stuttering. This is a big deal for people who stutter. In an NPR story, the daughter of Malcolm Fraser, founder of the Stuttering Foundation of America, says it well. “”One of the things that always worried him was that he simply wasn’t working hard enough. That if he just tried harder, he could keep himself from stuttering. Knowing that it has biological causes would lift a tremendous burden of guilt. I’m sure of it.”

These are important stories for people who suffer from these diseases, but the stories have little to do with treatment and everything to do with perception. For parents of children with Asperger’s symptoms, being on the autism spectrum can mean access to services they wouldn’t have had otherwise, simply because we now see the disorder differently. And I imagine the stuttering discovery will help concentrate dollars in the most useful research areas because we see a biological basis rather than a psychological one. It seems like the consequences on the medical side in both cases are entirely positive, but perception of disease isn’t limited to doctors and scientists. Perception is personal to the sufferer. What does it mean to go from having Asperger’s to being autistic? And the society at large will shift based on these changes in terminology and perception. For example, people once perceived stuttering to be a mark of bad upbringing—something inflicted on a child by poor parenting. Now we will perceive the fault to lie within the stutter’s genes. In any case, I don’t know if one perception is necessarily better than another, but they are certainly different. If you need proof of the power of different perception in this are, I have, once again, an NPR story, this time about a company in Chicago that recruits people with Asperger’s to do software testing. This is not a charitable organization. “[The company] actually sees autism — the autism characteristics — as a potential competitive advantage,” the company’s founder says.

These are both disorders that have an enormous effect, personally and socially, on children, and the social challenges of children are something I spend a lot of time thinking about for obvious reasons. It will be very interesting to see how youth culture assimilates these changes over the next few years.

-Andrew Karre