A recent op-ed by psychiatrist Paul Steinberg about Asperger's Syndrome is getting a lot of attention with in autism circles, most of it negative. Steinberg is a little wary of the Asperger diagnosis, saying that it is not "true" autism. He notes:
Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice. An expert task force appointed by the American Psychiatric Association is now looking into the possibility of changing the way we diagnose Asperger. True autism reflects major problems with receptive language (the ability to comprehend sounds and words) and with expressive language. Pitch and tone of voice in autism are off-kilter. Language delays are common, and syntactic development is compromised; in addition, there can be repetitive motor movements.
For Steinberg, Aspergers or high-functioning autism is not really autism because, these folks can talk. For him classic autism is the version we have been most familiar with, the kid who can't talk or do much of anything except live in their own world. Language is the key factor that separate the "real" autism from the "fake" one. When talking about Aspergers, he sees people who can talk, but who have a "social disability" something that might be an issue, but is not autism.
Of course, I beg to differ. Steinberg uses a pretty narrow definition, limiting it to language and not to the larger issue that affects anyone of the spectrum, and that is communication problems. People who are autistic have issues communicating exactly to others. Some who are higher functioning might learn those skills later, but it is still not inate, which causes a whole bunch of issues for people.
What Steinberg is doing is that he is failing to separate the cultural phenomenon that is Aspergers from real, live people who have it. He talks about "South Park" and how some people are claiming this or that historical figure had Aspergers and sums up that clearly it has to be the illness du jour that people are dreaming up to make the odd somewhat fashionable.
But there's another side to all of this, the side that deals with real people. I've heard enough stories to know that a lot of folks with Aspergers are not fashionalble or cute, they are real people who live real lives and the face real struggles because of their autism.
And that includes me.
Before my diagnosis, I really wondered what was wrong with me, I stumbled in and out of jobs, and relationships with me were challenging. I'm not saying it's all roses and gumdrops now, but life has become a lot better knowing why I acted so oddly to others. I knew where my limits were and tried harder to smooth over the rough edges. Aspergers wasn't cute or trendy in my life; it was barrier and at times dragged me down. I'm not saying that it was all bad, but being even "a little autistic" means that you struggle with things that are so much more easier to others.
What Dr. Steinberg fails to note is that autism is a dail, a spectrum where some are "mildly affected" and others are "profoundly affected." It's a range, not a switch that turns on or off.
I wish that Dr. Steinberg would have spent time with some of us who do have Aspergers. Maybe he would see that we aren't trendy fashionistas faking autism, but real people, who really, really struggle in life, and who are glad to know we aren't crazy, we aren't alone and we can take what has limited us and use it make us soar.