Tag Archives: advocacy

Jerry Seinfeld, still not autistic after all these years

4 Dec

Jerry Seinfeld made a bit of a stir in the autism community recently by stating in an interview that, well, let’s use his own words:

I think, on a very drawn out scale, I think I’m on the spectrum.

This statement caused some excitement in some quarters and some vocal pushback in other quarters.  Well, that and this statement:

But, I don’t see it as dysfunctional. I see think of it as an alternate mindset.

My guess is that this second statement caused much if not most of the pushback that Mr. Seinfeld received.  Why?  Because it says that, say, Jerry Seinfeld can have autistic traits and those traits are not dysfunctional for him.  Much more, people expressed a fear that Jerry Seinfeld (or someone else with little or no disability) would become the face of autism and that the significant challenges faced by many on the spectrum would be ignored.

Looking back at the first statement above, note that we never get to hear what “it” is.  Is “it” autism in general?  Or, is “it” that part of Mr. Seinfeld’s experience that he identifies as being somewhat like autism?  It seemed very clear to me that Mr. Seinfeld was talking about his own experience, but I can see how others might not see it that way.  In which case we as a community should have said, “Hey Mr. Seinfeld, could you clarify that statement?”  Sadly there won’t be a clarification.  Likely because of the pushback, largely from a few vocal parents of autistic children who face extraordinary challenges due to autism (and intellectual disability and other disabilities), Mr. Seinfeld has made it clear that he’s not autistic and stopped the conversation there.  I never thought he was saying he was autistic, hence that whole “very drawn out scale” caveat he put in his initial statement.

In a newer interview, on Access Hollywood,  here (my apologies but the embed code doesn’t seem to be working or I’d have that video embedded here) we hear Mr. Seinfeld put the brakes on the entire Seinfeld/autism discussion.  The “money” quotes from that interview?  From Time Magazine’s article:

“I don’t have autism, I’m not on the spectrum,” theComedians in Cars Getting Coffee star said Wednesday. “I was just watching a play about it, and … I related to it on some level”

To this observer, the interview comes across as though Mr. Seinfeld asked, “Hey, I got myself into some difficulty.  Could you interview me and help me get out of it?”.  Whatever the background, Mr. Seinfeld put a stop to the discussion.

In the end, we as a community lost a potential ally by using his celebrity to air our own dirty laundry.   We are certainly a divided community on a few issues.  The one in particular here is the way in which some people don’t want to accept the fact that autism is a spectrum.  Autistics have varying degrees of challenges, both due to autism and to other conditions (e.g. epilepsy, intellectual disability, anxiety, etc.) that are common within the autistic population.  One reason I don’t particularly like the term “spectrum” is that implies a one-dimensional distribution, a line with those requiring constant support on one side and those who can manage independently on another.  Well that’s not really accurate.  By that model, the students in my kid’s classroom are all in one narrow band of the spectrum.  But they aren’t.  They are each unique in their strengths and weaknesses.  Autism for one is not the same as autism for another.

But let’s get back to that division.  Some people spoke out about a “war” between “autistic self advocates and parents of severely autistic children” and that the autism spectrum should be split.  Others said that were Mr. Seinfeld to become one of the public faces of autism, he (like Temple Grandin, somehow) would be used by officials to downplay the significant needs of those with great challenges and, again, the spectrum should be split.

We are so divided that we need some sort of civil war to divide the spectrum.  Really?  Here’s the thing, we don’t.  There is a large, growing and vibrant community I in invite those who want division to join it.  The founder of this blog, Kev Leitch, understood that.  He understood it when he made Left Brain/Right Brain a group blog with parents, professionals and autistics as contributors.  He understood it when he built a discussion forum which was inclusive.  The people at The Thinking Person’s Guide to Autism understood that when they built a community with voices from all over the community.  Their Facebook page has over 108,000 likes at this point.

There is a place for advocates who have a very narrow focus.  Say, only autistics with intellectual disability or only self-advocates.  But when you take that to the level of claiming that we should split the community over some “war”, you are doing harm.  The strongest advocates are those who see beyond their own self interests, who advocate for those in the community whose needs differ from one’s own self-interest (even if that “self” interest is in supporting a loved one).

Or, to put it simply, I expect that self-advocates will support advocacy that directly benefits kids and adults who require 24 hour support, like my kid. Just as I think self advocates deserve advocacy support from parents like myself.

In this whole hullabaloo about Seinfeld and autism I’ve seen some reasonable voices.  I’ve saved them for now.

First, from Jerry Seinfeld and Autism, an article by John Elder Robison (autistic adult) at Psychology Today:

Someone like Mr. Seinfeld – by virtue of his public persona – could easily be seen as a “face of autism,” when in fact we are a very diverse community and many of us want or need far more services and supports than Mr. Seinfeld has so far requested publically. The uninformed public could look at him and say, “autistic people are millionaire comedians,” which is far from accurate. Sure, there are some autistic comedians and some rich ones but most of us are somewhere in the middle. We are all individuals.

Then, from Amy Daniels at Autism Speaks in Celebrate Seinfeld, But Don’t Forget Those Whose Needs Are Great:

So while we celebrate the unique abilities that autism can bring, we must not forget that no one “face” represents autism. We need to remember that around a third of those with autism have co-occurring intellectual disability. A similar number are nonverbal and have tremendous difficulty communicating their thoughts and needs. Thanks to research, we also know that most children and adults with autism have related physical and mental health conditions. These conditions include epilepsy, extreme and chronic anxiety, painful gastrointestinal disorders and disturbed sleep.

We don’t need to fear that the one face of autism will not represent our interests.  We need to make sure that there is no “one face” of autism.  It would have been great if Jerry Seinfeld had been one of those faces.  A face of success (isn’t that what we parents want for our kids?) to serve as a hero for some.  That would not have taken away anything from my kid, as long as we had other faces of autism to represent the whole spectrum.

By Matt Carey