Last week's announcement by Jerry Seinfeld that he is "probably on the autism spectrum" has been met with mixed emotions by those of us who are connected to the autism community. There are those who applaud Seinfeld for being open about his struggles with social engagement and those who fear that his announcement will somehow diminish the struggles of those on the spectrum. Both sides are excoriating one another in the blogosphere, highlighting the division between the parents of low-functioning kids and the parents of the high-functioning ones.
Last week, I shared with journalist, Renee Ghert-Zand of the Times of Israel my main concern: how might a self-diagnosis by a public personality might negatively affect those who struggle to have their autism understood by society.
Seinfeld revealed to NBC's Brian Williams that he often has difficulty picking up on social cues and that he is a very literal person. However, he views these behaviors simply as a different mindset rather than being a dysfunction. In fact, he stated that he doesn't believe that "being on the autism spectrum as a disability."
But here’s the problem: for thousands and thousands of individuals, the manifestations of their autism are a disability. Autism is a complex neurodevelopmental disorder that, by definition, impacts myriad aspects of one’s life. Our son, Ben, is now fourteen-years-old. He has a diagnosis of what used to be called Asperger’s Syndrome, but since the publication of the DSM-V, is now considered to have an Autism Spectrum Disorder. Regardless of what it is called, Ben has a number of deficits that routinely affect his daily life including his ability to establish and maintain normative relationships with his peers.
In short, Ben’s autism is a disability. To insist otherwise would invalidate the ongoing frustrations and struggle he faces each day as he makes his way into the world. He would be the first to admit that his “autism is not an excuse but it sure does make everything harder for [him] than for normal kids.”
There is a saying that if you know one person with autism, you know one person with autism. Ben’s autism doesn’t look like other people’s autism and, therefore, it would be wrong to assume that Jerry Seinfeld doesn’t have autism based solely on the fact that he is able to function so much more efficiently than my son.
To receive a diagnosis of having an Autism Spectrum Disorder, an individual must meet the criteria (http://www.cdc.gov/ncbddd/autism/hcp-dsm.html) as determined by the American Psychiatric Association. One can exhibit what many would consider “asperger-like” behaviors and not actually be on the autism spectrum. Autism is not just about those behaviors; it is how much said behaviors impact one’s life. In other words, sometimes a quirky person is just that — a quirky person.
If Mr. Seinfeld does truly believe that he is on the spectrum, I encourage him to seek a diagnosis and learn more about autism. Such research can serve to contextualize his relationships with others and how autism affects the way he experiences the world around him. In doing so, he will have the support of the entire autism community. If, however, his announcement was merely to garner attention for a quirky comedian, I urge him to consider the potential difficulties now faced by those who will never be the “successful autism” human interest story the media loves. It is challenging enough for individuals on the autism spectrum to have their diagnosis understood and taken seriously; I can only hope that Seinfeld’s announcement, in the absence of a diagnosis by a medical professional, will lead to his own self-understanding.
Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow whose work appears regularly on the Rabbis Without Borders blog and Kveller.com as well as a variety of other online sites. Writing at This Messy Life (www.rebeccaeinsteinschorr.com), Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Follow her on Twitter @rebeccaschorr.