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Wednesday, February 01, 2012

Pathologizing the Quirky
Posted by Jill | 5:48 AM
In 1999 I started seeing the term "Qurkyalone" appearing on the Web. It was about a new web site for people who preferred being alone to the relentless pressure to date just for the sake of not being alone. In 2004 two pediatricians, Perri Klass and Ellen Costello, published Quirky Kids, which professed to be a manual for parents of children with "right hemispheric dysfunction, in which the right hemisphere of a child’s brain does not develop as effectively as the left. In extreme cases the result is autism, but there is growing recognition that many more children suffer from milder variants of the problem which, while not entirely debilitating, can make everyday life a challenge. Those thus afflicted may show some combination of developmental and learning delays, acute sensitivity to noise and touch, large- and/or small-motor weakness, difficulty engaging with others, obsessive preoccupations with narrow areas of interest, and severe discomfort in unfamiliar situations." And then you started hearing about "quirky kids". And suddenly, being a kid who preferred being alone became a pathology on the autism spectrum.

I can't help but think back on my own childhood. I was what I would call a quirky kid were it not for the pathological definition cited above. I never had a lot of friends, and when I had friends they were other quirky kids. I remember perfectly happy sitting in my room reading or making doll house furniture out of construction paper or copying fashion photographs in the New York Times Magazine to make paper dolls. I remember largely being much happier in my room with my crafts than out with other kids, where I was teased for being shorter, fatter, and fearful of most kinds of sports. How much of my social phobia was to avoid the teasing, how much of it was a general unhappiness at living in a home with parents who fought constantly and where upheaval of our lives through divorce was a constant spectre, how much of it was because I genuinely preferred being alone, I have no idea. I do know now that what I was, was a depressed kid. It didn't seem like that at the time, because I didn't have the frame of reference to know what depression was, but by the time I entered high school and spent a lot of time sitting alone copying moody poetry into a blank book and wearing the same poncho every day and hiding behind long hair, I did sort of realize what it was. But when I think of what happens to kids who are different now, I can't even imagine the DSM-IV classification they'd put me in if I were six or seven years old now.

Somewhere along the line I got over all that. There are a number of reasons. One of them is simply growing up. A couple of really good behavioral/cognitive therapists helped a lot too, as they helped me to stop the runaway train of hyperemotionality that characterized my earlier years. Getting my master's degree and having to work on group projects that involved making public presentations in which I was often the only native English-speaker in the group helped. And some of it is just getting older and not caring so much what other people think. But while today I still have times when I feel overwhelmed by comparatively trivial traumas, the constant drama that I used to perceive in my life isn't there, and I've also become a garrulous, friendly person that I would never have recognized in my teens. I've had difficult people in my current jobs set off all my baggage, and my response is to find techniques to turn that around and make such people allies. Somewhere along the line I learned to like people.

Today in the New York Times, Benjamin Nugent writes about having been diagnosed as a child with Asperger's (mistakenly, it turns out):

There’s an educational video from that time, called “Understanding Asperger’s,” in which I appear. I am the affected 20-year-old in the wannabe-hipster vintage polo shirt talking about how keen his understanding of literature is and how misunderstood he was in fifth grade. The film was a research project directed by my mother, a psychology professor and Asperger specialist, and another expert in her department. It presents me as a young man living a full, meaningful life, despite his mental abnormality.

“Understanding Asperger’s” was no act of fraud. Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. The manual, still the authoritative text for American therapists, hospitals and insurers, listed the symptoms exhibited by people with Asperger disorder, and, when I was 17, I was judged to fit the bill.

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).

[snip]

The general idea with a psychological diagnosis is that it applies when the tendencies involved inhibit a person’s ability to experience a happy, normal life. And in my case, the tendencies seemed to do just that. My high school G.P.A. would have been higher if I had been less intensely focused on books and music. If I had been well-rounded enough to attain basic competence at a few sports, I wouldn’t have provoked rage and contempt in other kids during gym and recess.

[snip]

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.

And yet that's just what's happening now. Parents who don't have the time or the inner resources to help their quirky children navigate childhood, overtaxed besieged teachers who have to get the kids in their classes through standardized tests no matter how their minds work,and a society that fears and loathes people who can actually think - all of these combine to pathologize kids who just march to a different drum.

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2 Comments:
Blogger Bartender Cabbie said...
Right on the money.
2/1/12, 7:12 AM  
Anonymous Patricia said...
It happened to me too. I had aspergers as a child and teenager---into my 20s. However, I wish there HAD been a label to it back then. I spent so much time wondering why I was "different" and why I couldn't cope with daily existence as others did. I outgrew most of it, as you did, but I would have appreciated a bit of understanding and caring from adults when I was a very awkward child. But they were all clueless and uncaring back then.
2/3/12, 5:34 AM  
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