So now Jerry Seinfeld isn’t autistic after all. When asked about his controversial self-diagnosis by a reporter from Access Hollywood last week, Seinfeld said definitively, “I don’t have autism. I’m not on the spectrum.”
I completely respect Seinfeld for not being afraid to reverse his position once he realized his previous statement was being taken literally when it seems he was speaking metaphorically: “I just was watching this play about [autism] and thought, why am I relating to something?” he clarified. “I related to it on some level. That’s all I was saying.”
Seinfeld is far from alone in his casual use of strictly defined terms from the mental health arena. Advocate Rebecca Fuoco recently posted an article onHuffington Post about this very issue. “Using names or acronyms of mental illnesses to hyperbolize innocuous idiosyncrasies and experiences has become pervasive in our cultural dialogue,” she observed.
Fuoco didn’t include autism in her list of examples – focusing instead on OCD, PTSD and schizophrenia – but she very easily could have. In 2012, New York magazine published a piece by Benjamin Wallace about exactly this, how “Asperger’s” and “autism” have become a “one-stop shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal…some murky hybrid of egghead and aloof.”
But as tempting as it is to toss around diagnostic labels, it’s a dangerous game – as Seinfeld discovered when he faced an onslaught of criticism from parents whose autistic children suffer devastating impairments. Fuoco agrees: “It is important we end this trend…because making these flippant references (1) trivializes how devastating the illnesses can be and (2) perpetuates myths and misunderstandings.”
It’s also fundamentally dishonest. “Having Asperger’s-like syndrome does not give you Asperger’s,” argues a therapist quoted in the New York essay. And although the Diagnostic and Statistical Manual of Mental Disorders no longer recognizes Asperger’s as a separate diagnosis, the diagnostic criteria for autism spectrum disorder are very clear, requiring that symptoms “cause clinically significant impairment in social, occupational, or other important areas of current functioning.” In other words, those who argue that autism is just a difference, not a disability, are wrong by definition. If a person’s symptoms aren’t disabling – which I think is a fair synonym for “clinically significant impairment” – then s/he doesn’t meet the criteria for an autism diagnosis. That’s not to say there aren’t high-functioning individuals with autism, because of course there are many. Their symptoms may be less obviously disabling than those on the severe end of the spectrum, but they are often isolating, resulting in limited social and employment opportunities. One 2013 study found that over 80% of autistics aged 21-25 still lived at home.
What to do? Unfortunately, I don’t think there’s much we can do to redeem the word “autism.” The general public is much more likely now to associate quirkiness, even brilliance, with autism than the profound challenges more typically faced by those with the disorder, who are often intellectually disabled (40%), non-verbal (25%), aggressive and/or self-injurious (50%) and prone to dangerous wandering (50%). But the Seinfeld controversy did raise a cry I’ve heard before, to undo the work of DSM-5, which merged Asperger’s, PDD-NOS and Rett Syndrome into the larger autism diagnosis. “What I am proposing,” wrote Marie Myung-OK Lee inSalon, “is separating the high-functioning end of the spectrum – perhaps calling it something else – so that we can focus on the urgent and looming issue at hand.” Alison Singer, president of Autism Science Foundation, believes it’s severe autism that needs a new name: “If autistic self-advocates are so proud of their autism, they can keep the term. We could then choose a new word to describe the type of autism that is relentless, aggressive, abusive, painful, constant and overwhelming.”
This type of classification is used in other disorders, especially those that, like autism, fall along a broad continuum. Many people have varying degrees of visual impairment, but only those at the tail end of the spectrum are blind. Those individuals who meet clinical definitions of deafness or obesity certainly have some things in common with those who are hard of hearing or overweight, but the severity of these cases necessitates greater support and intervention, and everyone easily appreciates those differences.
Not only would this change clarify matters for the general public, but I really believe it would bring peace to the enormous and deeply divided autism community. Autistic self-advocates and parents of severely autistic children are constantly at war over whether or not autism should be cured and the best types of treatments, educational strategies and accommodations we should pursue with our always limited local and federal budgets. Separating out these diagnoses would let those most affected by each pursue the most appropriate agenda, which seems like it would be a win-win for everybody.