Thursday, December 30, 2010

NPR's Asperger's piece: All things not considered

NPR’s “All Things Considered” ran a piece today (Wednesday) on the difficulties in defining “mental disorders.” Based on what is posted on their site regarding the piece, they essentially report the opinion of one man, Allen Frances, who has taken it upon himself to do two selfish things. The first is that he blames himself for what he calls the “Asperger’s epidemic.” The second is that he felt compelled to discuss some unfounded–or at least, unsupported–assumptions about Asperger’s diagnoses on NPR.

I've blogged the above in full over at The Biology Files, but wanted to add in a few even more personal observations here.

Our oldest son is diagnosed with Asperger's. He received this diagnosis at age 3, almost 4, when we lived in San Francisco. There wasn't any effort to "get" the diagnosis for school; in fact, TH was referred by a speech language pathologist who had done screenings at his preschool. We always knew that he had significant deficits in social interaction and some other clear oddities, and the Asperger's diagnosis--or "high-functioning autism"--was an obvious fit, as he was using language "on time"--not pragmatically, but the words were there. If there's one thing that I take issue with in the diagnostic criteria for Asperger's, that would be it. It was this feature that distinguished his diagnosis from Autistic Disorder.

Our middle son has a diagnosis of "provisional Asperger's" (among other things). In some ways, he's more the "little professor" type with his literalness, tendency to monotone monologuing, lack of perspective taking, etc., while TH is more of an autie with his behaviors like flapping and echolalia. We did not seek an Asperger's diagnosis for our middle son, and he does not receive related services at school. The way IEP-related services work at our school, a child receives help for one of three reasons: (1) academic need (e.g., an aide or collaborative classroom as academic support for work the child cannot complete alone); (2) occupational therapy needs (e.g., for motor delays); and (3) speech therapy. Our oldest son received all three when he was in district, while our middle son receives none because he does not need them, and we have not asked for them. He's complicated, and his needs are not academic.

For us, an Asperger's diagnosis was not something we sought. It was something a medical professional diagnosed. And I doubt to the very tips of my toes that we have received anywhere near $50,000 a year in supports for our oldest child at any point in his schooling. Indeed, I now school him, so we pay our taxes and receive nothing--scholastically speaking--in return.

I think the thing I take most issue with in Frances' words--aside from the utter lack of citation of any supporting data--is his description of an academically able child who's "socially shy" as being the typical recipient of an Asperger's diagnosis. This description shows, in my mind, a lack of understanding--dare I say, empathy--for what it really means for a child who has Asperger's or autism. "Socially shy" comes nowhere near describing it. Based on our experiences with our sons and what we know for other autistic people, the kind of anxiety they feel in new situations or with new people is more akin to sheer, unadulterated terror. I know that is how my sons react.

Only today, we took our middle son to meet the social skills teacher. He was almost paralyzed with fear and anxiety. He barely spoke a word. He never once looked at his teacher. This isn't just "socially shy." It's paralytic anxiety, and my children have it in every single novel situation--and often even in more familiar scenarios. In other words, it's more than "shy," and it's debilitating. In my mind...and in the typical lexicon of "mental" illness speak...that qualifies as a disorder, not just some kind of eccentricity.