Sunday, April 17, 2016

Diagnostic ‘labels’: Don’t be so quick to discard

Book cover: 'Back to Normal, Why Ordinary Childhood Behavior is Mistaken for ADHD, Bipolar Disorder, and Autism Spectrum Disorder' by Enrico Gnaulati. Image depicts a row of four plastic spoons, each holding a pill
From blogger Gail Forsyth-Vail writing at Beacon Broadside, I learned about an argument by Enrico Gnaulati, for removing children’s diagnostic “labels.” By briefly sharing my background, I hope to explain why this idea makes me uncomfortable.

When I grew up, I was painfully aware that I was not like other people. It was continually made evident by classmates who taunted and rejected me.

From kindergarten onward, I was a school-wide outcast.

​Adults condemned me as a picky eater, because I could not tolerate certain foods. On one occasion, a babysitter tried to force-feed me chocolate cake. My mother actually had to tell this person that I didn’t have to eat cake if I didn’t want it (because a clamped-shut mouth and pulling away in revulsion were not accepted as communication). My mother found me, face smeared with the cake that the sitter tried to force on me.

Eating is easily the most difficult sensory task for this woman on the autism spectrum. Even today, I often have to bring my own food when attending social events, because I can’t depend on organizers’ accommodations toward atypical food reactions. Even if I’m not hungry, I might end up with a plate that a well-meaning person “prepared” for me, which is filled with foods I cannot eat.

I grew up in a culture that seemed governed by hidden rules that were never explained. It was clear to me that everyone else had somehow “gotten the manual,” but no one ever offered any explanation of how and why I was different.

Only in adulthood did I receive my “label,” and rather than subjecting me to “stigma,” it finally provided an explanation for why I felt like an alien on Earth. I owed this revelation to the broadening of criteria for autism spectrum disorder, and reading about this fascinating condition was like reading my own biography.

I agree with Forsyth-Vail that children (and adults) should be understood first as “individual[s], not a diagnosis.” But I wish to argue that retaining the label serves an important function.

Shedding my label won’t magically reset me “back to normal,” because I was never normal. It would simply force me back to a painful time in my life when that difference went unexplained.

Moreover, a label can legitimize a person’s difficulties with meeting social expectations. That’s important in a society that still insists people “qualify” before it will consent to address the barriers that prevent their full participation.

I do not agree with Gnaulati’s assertion that autism is overdiagnosed — not when a survey released in 2009 by England’s National Health Service confirmed that autism spectrum disorder was just as common in adults as it was in children. Rather, I believe that diagnosticians and researchers have a better, clearer understanding today of how autism manifests.

Gnaulati is apparently concerned with giving hope to parents — but what about benefits to the person who wears the diagnostic label? Why, as far as Gnaulati is concerned, must diagnosis only be limiting?

Self- or social messages of limitation do not have to be a diagnosis’ inevitable result, and for Gnaulati to so-frame it, does a real disservice to those of us who gained clarity and self-awareness through receiving our “label.”

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