Thanks a lot, Jerry Seinfeld.
Actually, I mean it. At least Seinfeld did the right thing a couple of years ago by quickly pulling back his dumb, seemingly off-the-cuff remarks that he himself was autistic. It turned out, he wasn’t really autistic. He says he “relates” to autism. OK, fine, whatever.
Self-diagnosed “autistic” celebrities drive many of us in the autism world nuts. Sure, there really are some autistic celebs out there, those rule-proving exceptions that have actually been to real doctors and have received real diagnoses, and have had real struggles due to their autism. Due to their autism. Not due to the countless other disorders, conditions and personality issues that can make life difficult.
When I was in grad school en route to being a licensed clinical shrink, and even earlier when I was taking an undergrad abnormal psychology class, one of the hallmarks of us newbie rubes was learning about various disorders and thinking, “Oh my god, I’m _________.” Depression, Bipolar, all the personality disorders, you name it, we were all it.
After a while, we figured out that there are bits of every disorder in all of us, but in small bits that don’t become disorders unless these little bits become big bits that create trouble, misery and dysfunction for us. Feeling sad doesn’t mean you suffer from major depression. Feeling giddy over lunch doesn’t make you bipolar. And don’t get me started on the most over-diagnosed of all (by amateurs), Borderline Personality Disorder.
A pinch of salt in a recipe adds flavor. The whole container of salt makes it inedible.
Sure, maybe Jerry Seinfeld has a pinch of “the spectrum.” His little bit might have helped him reach the summit of the comedy world.
Our son Ben got the whole damn box. His version of the spectrum is a disorder. It is autism. It has destroyed his life.
Barring a professional diagnosis stating otherwise, Jerry Seinfeld’s -whatever- was simply a part of his quirky, brilliant personality. Maybe his social awkwardness made some interactions difficult. Maybe his supposed concrete literalness made for some misunderstandings.
Sound familiar? It should. It’s half the people I’ve ever known.
Seinfeld’s self-misdiagnosis underlined the problem of a “disorder” that is a spectrum wide enough to embrace super-functional geniuses and the severely impaired. It opens the door for this kind of amateur absurdity.
We are all miserable at various times for various reasons, some of them internal. Some of our internal demons share bits with those on the spectrum. There is a term for that. It is called being human. It is not autism.
Now the most recent celebrity I’ve noticed to have what I classify as SDF (Self Diagnosed Fauxtism) is Garrison Keillor, the Prairie Home Companion creator.
Yeah, sure, maybe, who knows? Nobody’s diagnosed him, but we have his word for it. He does have trouble making eye contact after all.
The problem is, while everyone is now autism-aware, what are they aware of? In our world, many of us Americans receive our wisdom, like it or not, through headlines and news blurbs and network teasers and US Magazine. How many have looked at something like the 17,000 word article published a few years ago by New York Magazine on this very topic (Is Everyone on the Autism Spectrum?)? It’s Seinfeld’s “I’m autistic!” that saturates the media. His retraction? While appreciated, some saw it, some didn’t, and most don’t care - unless they actually love an autistic person.
It matters because public opinion based on autism “awareness” can be dangerous to those really struggling with it. It impacts government policies on housing, funding and services. If people think of Jerry Seinfeld and Garrison Keillor when they hear autism, instead of the millions ― high-functioning to severe ― living with a serious condition, it hurts the cause instead of helping it.
Yesterday two women were chatting in front of me as our commuter train was pulling into the station. “I know that Jerry Seinfeld’s autistic,” said one to the other.
“Bullshit,” I said a little too loudly since it got quieter immediately. I could feel a couple dozen commuter eyes upon me. I kept going.
“Seinfeld issued a retraction the next day, saying he misspoke and is not autistic.”
Like most who saw the first story, they’d apparently missed his backpedal.
I went on to give a 60-second lecture, or maybe diatribe ― it was a captive audience ― on celebrities and true autism. As we shuffled off, the two women said, “Thank you. I know more now,” while another gave me a smile and nodded ― probably an autism parent herself.
So we all do what we can ― but where’s an Us Magazine reporter when you need one?
More about Ben: Ben Stories