Wednesday, February 1, 2012

Asperger's and Labeling Theory

Asperger's History of Over-Diagnosis:

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.

Eventually, biological markers, now in the beginning stages of development, will help in separating autism-spectrum disorders from social disabilities. For example, researchers at the University of Pittsburgh Medical Center have recently developed three-dimensional brain scans that look at brain wiring. In preliminary studies people with autism-spectrum disorders appear to have too much wiring and disorganized wiring in areas involved with language acquisition.
Which, fundamentally, would solve nothing. "Disorganized wiring" is like high or low Seratonin levels: it may or may not be the "cause" of different behaviors/feelings, but whether these behaviors are "mental disorders" is nothing more than an issue of labeling.
Nevertheless, children and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.
For a vivid example of this, in today's NYT is a an article by Benjamin Nugent, who was diagnosed with Asperger's as a teenager and who "grew out of it" as an adult. It's a brilliant take down of the psychiatric-industrial complex and our "addiction" to over-pathologizing weird or quirky behavior which falls outside societal norms.
FOR a brief, heady period in the history of autism spectrum diagnosis, in the late ’90s, I had Asperger syndrome.

I exhibited a “qualified impairment in social interaction,” specifically “failure to develop peer relationships appropriate to developmental level” (I had few friends) and a “lack of spontaneous seeking to share enjoyment, interests, or achievements with other people” (I spent a lot of time by myself in my room reading novels and listening to music, and when I did hang out with other kids I often tried to speak like an E. M. Forster narrator, annoying them). I exhibited an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus” (I memorized poems and spent a lot of time playing the guitar and writing terrible poems and novels).

The thing is, after college I moved to New York City and became a writer and met some people who shared my obsessions, and I ditched the Forsterian narrator thing, and then I wasn’t that awkward or isolated anymore. According to the diagnostic manual, Asperger syndrome is “a continuous and lifelong disorder,” but my symptoms had vanished.
Which wouldn't be surprising given new data suggesting that 40%-50% of diagnosed autistics in childhood "no longer fit the diagnostic criteria" of autism in adulthood. Here today, gone tomorrow.
I wonder: If I had been born five years later and given the diagnosis at the more impressionable age of 12, what would have happened? I might never have tried to write about social interaction, having been told that I was hard-wired to find social interaction baffling.
The Thomas Theorem: situations we define as real become real in their consequences. If we tell kids, at increasingly younger and younger ages, they are mentally ill, they have (fill in the blank), we are only increasing the chance that these kids will see themselves as mentally ill and act out accordingly. We create mental illness by diagnosing mental illness where none exists. Whether these kids are, in fact, mentally ill is unknown.
The biggest single problem with the diagnostic criteria applied to me is this: You can be highly perceptive with regard to social interaction, as a child or adolescent, and still be a spectacular social failure. This is particularly true if you’re bad at sports or nervous or weird-looking.

My experience can’t be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.

The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.

Sing it, brother.

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