April 11, 2018

This past April 1, the New York Times published an Op-Ed that many folks in the spectrum community rightfully found disturbing. According to the article, Dr. Hans Asperger, the identifier of Asperger’s Syndrome, was much more culpable in the extermination of neurodiverse children during the Holocaust than we all previously knew or wanted to believe. The author, Edith Sheffer, a senior fellow at the Institute of European Studies at UC Berkeley, has a forthcoming book that will elaborate more on this very subject.

Honestly, we’ve been seeing rumors to this effect trickle in for quite some time now. I don’t have the credentials to tell you whether the evidence is true or false, but my gut says it’s true. I studied the Holocaust a great deal as an undergrad, and the chances of someone conducting high-level work under the auspices of that government, without engaging in atrocities…and living? The odds are awful. I don’t doubt Ms. Sheffer’s scholarly work whatsoever.

However, in Sheffer’s op-ed, she writes, “Moreover, the name (Asperger) remains in common usage. It is an archetype in popular culture, a term we apply to loved ones and an identity many people with autism adopt for themselves. Most of us never think about the man behind the name. But we should.” Herein, I doubt Ms. Sheffer tremendously.

Most of us, for instance, were diagnosed with Asperger’s Syndrome by a clinician. The condition was not “adopted for ourselves” or  “applied to loved ones” as a throwaway, comedic remark. A recognized clinical diagnosis, Ms.Sheffer should know, is not a “fad.” That assumption is not objectionable on ethical grounds, it’s just stupid.

At greater issue is her dictum at the end, “But we should,” that implies a wish on Sheffer’s part that people with the diagnosis need to feel worse than they might already do, given the stigmatic consequences of living life with any disability, or that our worth can be measured by some total stranger’s long ago life, i.e. that which we have no control over.

For starters, none of us technically have Asperger’s Syndrome anymore. Thanks to the 2013 fifth edition of the Diagnostic and Statistical Manual (DSM-5), which (however dysfunctionally) placed most of us under the canopy of “Autism Spectrum Disorder” this new information will perhaps hasten the finishing touches on getting rid of the his name altogether from our collective lexicon. And this is not tragic, because in the end, they’re just words. Back in 2000 when I and my 4 year-old son were diagnosed with Asperger’s, the negative stigma was like mud. Yet over the years, we improved the iconography surrounding the words, “Asperger’s Syndrome.” And in 2012 when we learned that the new DSM would get rid of the words and replace our diagnostics with the word, “autism,” many people were scared of that because the iconography surrounding the word “autism” was still somewhat mud-like. Well, it’s not even five years since DSM-5 came out, and we’ve already made the iconography surrounding the word “autism” twenty times better than it was. As I wrote in a recent article about the concept of “Autism Acceptance Month” itself, what’s the DSM-14 going to look like? Won’t all this stuff just be thought of as normal extensions of the human experience?

No, Ms. Sheffer, we don’t need to care. Perhaps the association with the word will obtain, a new, negative layer, given the new information we now have about the choices he made, and we will have to deal with that. But the meaning in our lives that the diagnosis brought was based on finally having answers to why we were so out of sorts with the majority. It was based on finding out that our behavioral differences were the result of our wiring, and not our character. We might have been grateful to him, and this gratitude now must be tempered. But it was not based on some fantasy that Asperger was this benevolent, warm and fuzzy man whose concern for vulnerable children rivaled that of Janusz Korczak (and brilliant scientists, in general, are…brilliant…but they are not warm and fuzzy). We loved the gold, not the gold miner; Ty Cobb’s base-stealing approach, not Ty Cobb; Wagner’s music, not Wagner. It’s sad perhaps, but do we really mind tearing down imaginary statues of Hans Asperger along with the confederate flags, or the careers of Hollywood rapists? I don’t mind, and I think it’s the right thing to do. Hans Asperger was not our Dr. Frankenstein, nor our father. I think it safe to say that if he hadn’t figured this stuff out, someone else, eventually, would have. We are seeking value in ourselves; not in any reputed, neurotypical saviors.

Finally, Ms. Sheffer; some advice? Those three words (“But we should”) could be interpreted as your telling spectrum people what to feel. I know it’s just three words out of a whole Op-Ed but…just don’t. We’ve been down that road before.

© 2018 Michael John Carley