by Emily Willingham -
Is every man in America somewhere on it?” Nora Ephron wondered about the autism spectrum in an e-mail to a friend a few months before her death. “Is every producer on it? Is every 8-year-old boy who is obsessed with statistics on it? Sometimes, when we say someone is on the spectrum, do we just mean he’s a prick? Or a pathological narcissist? I notice that at least three times a week I am told (or I tell someone) that some man or other is on the spectrum.”
The article ranges over a great deal of social interpretation of Asperger’s and autism, just as Ephron seems to have encountered. It’s true that this term has entered the lexicon as shorthand for a collection of traits–smart but awkward, socially inept–and that armchair psychologists (a.k.a. “pundits”) have suggested the diagnosis for everyone from the president to the perpetrator of the horrific Aurora movie theater shootings. But popular application of “Asperger’s” doesn’t make the recipient autistic any more than a recent application of the pejorative “retard” makes Barack Obama intellectually disabled.
Asperger’s is a diagnosis, one that’s been around now for a couple of decades, one that is codified in the current manual that clinicians use to make the diagnosis. If someone meets these criteria, they meet the definition of Asperger’s. Sitting on Fox or NBC and saying someone seems to have Asperger’s or deciding that the narcissist in your life must be an Aspie doesn’t, Picard-like, “make it so.” And dilution of the term into meaninglessness doesn’t unmake autism in people who are autistic.
The New York article comes around eventually to the fact that social abuse and casual use of the term aside, people with Asperger’s have significant deficits that unquestionably affect their quality of life, noting the high unemployment in this population, for example. But to get to that point at the end of the article, we must first dig our way through commentary from Bryna Siegel, a clinician who’s rather (in)famous in autism circles for her comment–repeated in the New York Magazine article and elsewhere–that if someone left their secretary’s number as a callback about a consultation for Asperger’s, she told her coordinator “don’t call them back” because people with Asperger’s don’t have secretaries. Comments like these, delivered with an attitude of blanket skepticism, do a real disservice to autistic people because they embed or confirm misconceptions in the public mind: people who claim an Asperger’s diagnosis are big phonies, and truly autistic people will never, ever amount to anything because they don’t function well enough to have secretaries.
As I note here, I don’t recall seeing anything in the criteria for an Asperger’s diagnosis that precludes having a secretary, although I see plenty to suggest having an assistant would be helpful. The people contacting Siegel are reaching out because they feel they might have discovered something significant and explanatory about themselves, and what do they get from this quarter? Radio silence in the absence of all other data because they have a “secretary.”
The crux of that comment seems to be related to function and that certain functions like verbal communication capacities or having an administrative assistant preclude an autism diagnosis. But I know several professionals who see a wide range of people on the autism spectrum and who have a very different attitude about the relevance of function. And autistic people themselves can and do speak to the realities of being someone for whom a diagnosis fits and who understands that the concept of function–as in “high” versus “low“–isn’t confined only to a capacity for self expression others can understand or to having a secretary.
After we wade through anecdotes about how people apply the Asperger’s diagnosis to rationalize a spouse’s poor behavior or a divorce, the NY Mag article takes us to a final scene of what people with the diagnosis experience, what they feel and talk about, what their struggles are. People with Asperger’s do struggle, in part because of an existing social construct that sees only their deficits and not their potential and in part because of a growing popsci dismissiveness and dilution of what “Asperger’s” even means, or what it will mean once it ceases to exist as a label. Confusion like this and the considerable overlap of “normal” and atypical behaviors in all of us leaves labels–Asperger’s, schizophrenia, bipolar disorder–open to these dilutions and casual applications, one reason I’d like to see an overhaul of the labeling approach in favor of addressing specific gaps. See, that way, my son could still get help but also possibly have a secretary someday.