Undeniably Autism

The New York Times recently printed two op-eds questioning the existence of Asperger’s. The articles came soon after a flurry of media coverage about upcoming proposed changes to the DSM-V, the newest version of psychiatry’s diagnostic guide.  These changes remove Asperger’s and PDD-NOS (pervasive developmental disorder– not otherwise specified) from the manual, instead creating one category for Autism Spectrum Disorder.  Concerns abound.  Will people previously fitting one of the three categories now fall into a diagnostic limbo?  Will folks lose services because they don’t fit the definition?  At least one study claims that these new criteria may greatly reduced the number of people diagnosed as on the autistic spectrum, although only time will tell.

Two op-ed contributors to the New York Times seem to have the answer to this possible upcoming crisis:  deny that Asperger’s exists and insist the only autism is the classic, nonverbal sort.  Benjamin Nugent, a thirty-something creative writer, was diagnosed by his mother (a psychology professor) and her colleague when in his late teens.  He states this was a case of misdiagnosis — that he was merely a socially late bloomer of sorts who buried himself in music and books as a teen, with all the behavior identified as Asperger’s vanishing in his early twenties. He uses his writing career as further proof of his neurotypical status:

Last year I sold a novel of the psychological-realism variety, which means that my job became to intuit the unverbalized meanings of social interactions and create fictional social encounters with interesting secret subtexts. By contrast, people with Asperger syndrome and other autism spectrum disorders usually struggle to pick up nonverbal social cues. They often prefer the kind of thinking involved in chess and math, activities at which I am almost as inept as I am at soccer (Nugent).

Where do I begin?  Nugent may well be correct in his stance that he never had Asperger’s.    Misdiagnosis happens in psychiatry and medicine, and it can be a tragedy. When one is quite close to a subject, which his mother certainly was, given it was her specialty, one may see more than is really there. Psychiatric diagnosis requires professional distance.  A parent’s observations and gut are important, but the final word on a serious diagnosis, medical or psychological, needs to be done by someone outside of the situation.

His novel, however, and the rest of his writing life, are not proof that he isn’t.  Chess and math are the stereotypical Asperger’s/Autistic pursuits perhaps, but many a person on the spectrum gravitates to other areas of interest.  Yes, nonverbals and paralanguage are a challenge to those on the spectrum.  They may be learned by memorization and subsequent application, the latter taking a good deal of mental energy and persistance.  They could certainly be written about, for when writing there is time to think, consider, and examine, tasks real-time living just doesn’t offer.

Nugent concludes with this overstatement: “But my experience can’t be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.” Not with responsible diagnosticians at the helm, it shouldn’t.    As a previously socially awkward, bookish kid who was and is clearly not on the spectrum who was surrounded by plenty of peers of the same ilk, I can tell you, it’s not the same thing at all.  Asperger’s, as in the DSM-IV, requires far more than an inclination to read and a lack of a large group of friends.

While Nugent’s layman’s lament irks me, psychiatrist Paul Steinberg’s Op-ed, Asperger’s History of Over-Diagnosis, outright angers me.  His main argument rests here: “True autism reflects major problems with receptive language (the ability to comprehend sounds and words) and with expressive language.”  Is receptive language a problem for those on the spectrum?  Certainly, and often expressive is, too.  What troubles me is his definition of “receptive language,” which he limits to comprehension of sounds and words.  Language is far more than that.  Receptive language includes understanding and using idioms and other figures of speech, reading body language and facial expressions, and appreciating the nuances expressed through pitch and tone (the latter to which he gives a nod on the expressive end).  As I noted above, this paralanguage may be learned, but applying that knowledge in the real-time of relationships can be quite taxing. Limiting the definition of language, receptive or expressive, denies the very real disability many on the spectrum experience.

So under Steinberg’s watch, where would all these socially awkward who clearly understand at least the literal spoken word be?  Where would the children presenting with “classic autism” be if they acquire this receptive language?  Are they no longer autistic?  There is far more to the autism spectrum than one element, and “the ability to comprehend sounds and words” is hardly the litmus test for receptive language or autism.  Steinberg advocates for a diagnostic rubric for a “social disability” rather than Asperger’s, expressing concern that the Asperger’s diagnosis could make life difficult for a person upon reaching adulthood.  Somehow he imagines a new category — not one with one of the A-words — would smooth their path into adulthood.

LIke Nugent, Steinberg ends his op-ed with overstatement that encourages misunderstanding and lack of appreciation fo the challenges kids and adults on the spectrum face: “But, as Martha Denckla, a pediatric neurologist at Johns Hopkins University, has lamented, the only Americans in the future who will perhaps not be labeled as having a touch of Asperger syndrome will be politicians and lobbyists.”  He plays this “everyone has it” card both ways, earlier invoking the names of Einstein, Warren Buffet, and George Orwell as people who might have had Asperger’s.  What’s not so subtly between the lines?  That people who “really” have autism couldn’t succeed as those men have.  To be autistic, it seems, one must be unable to achieve.

As a parent of a child firmly on the spectrum, I am outraged.  My son, now ten, has Asperger’s.  It takes little time with him to see that his mind works far differently than that of his older brother, either of his parents, or most of his friends.  Yes, he’s socially awkward.  He’s also verbally profoundly gifted, but that amazing vocabulary doesn’t change the reality of the limits of his receptive language.  All but the most overstated facial expressions, body language, tone, and pitch are largely lost on him.  His diagnosis was slow to come, with years of  “developmental delay” or PDD-NOS on various reports. There are numerous other symptoms that make his diagnosis clear, but his prodigious language abilities delayed that diagnosis.  Because of simplistic, incomplete understandings of autism and Asperger’s, his ability to speak at length about a variety of topics led therapists and doctors away from the diagnosis he has today. His ability to wordsmith is not all incompatible with his place on the autistic spectrum.

And as for the new criteria of DSM-V for autism spectrum disorder?  I imagine my son’s brain will work just the same way as it does now after that change goes into effect.  Will he meet the criteria?  Most likely.  But the rhetoric of the sort Paul Steinberg and Benjamin Nugent write does nothing to help him or others anywhere on the spectrum.  Steinberg’s assertion that “the ability to comprehend sound and speech” is the keystone to autism effectively negates the existence the autistics who have acquired those skills through hard work or always had those skills in place.  It negates the highly verbal (either in voice or written word) autistic community that still struggles with their disability.  Nugent negates those on the spectrum who aren’t all about “math and chess,” those who embrace writing as a form of expressing what can be so hard to do in face-to-face, verbal encounters for many with autism.  Both miss the mark, increasing misunderstanding and alienating parts of the autistic community.  Both attempt to deny the full spectrum of autism.

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5 thoughts on “Undeniably Autism

  1. I’m so with you on this. Asperger’s is constantly getting distilled down to one or two symptoms in the media, when there is just so much more to the story. My understanding is that there are hundreds of genetic mutations tied to Asperger’s. And as I get to know more & more Aspies, even the social aspect of it seems to be greatly varied among those diagnosed.

    • As the saying goes, you meet one person with autism/Asperger’s and you know one person with autism/Asperger’s. Why people with autism should all look the same when those of us without is a mystery to me.

      Sarah

  2. This is already getting a lot of press. I’m waiting until I read the actual DSM-V report. The NY Times article may have sensationalized the issue. Dr. Volkmar’s resignation from that group might have an impact on the report and his ‘unpublished study’ which will very likely never be published is suspect. I think I’d be cautious about giving too much credence to what he says. But, that said, I admire your vigilance because we need to always be alert when it concerns the needs of our children.

    Ellie

    http://homeonprairie.blogspot.com/

  3. I am just visiting your blog for the first time today, and I thank you for this piece. My son has Asperger’s and is also profoundly gifted. (He is also obsessed with the American Revolution.) I agree with everything you wrote.

    • I’m glad you found your way here and that the piece spoke to you! Life’s a wild ride, isn’t it? I rejoice when the media “gets” autism and sigh deeply when they don’t. Regarding American Revolution fans (and that’s likely as much an understatement for you son as it is for mine), here’s a link to a recent post on what he used in his rather self-led studies. My son’s back to blogging again, and his recent topics are all about the Revolutionary War. He’s appreciate some dialogue via comments from another person in the know, and if that person was PG and on the spectrum, all the better. If your son is interested, here’s the link to his writing: Bertram’s Blog.

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