Sunday, November 9, 2014

certain autism advocates cavalier attitude about Seinfeld's self-diagnosis

I suppose the story about Seinfeld stating that he believes he's someplace on the autism spectrum isn't going to die down anytime soon (at least a few more days).  So, perhaps this post is overkill, but I'd like to add some of my thoughts on the comments of various high profile persons and organizations involved with autism who don't seem to mind trivializing the disability that makes life so hard for so many of us.

Ari Ne'eman stated that Seinfeld's self-diagnosis shows that the autism community is larger and more diverse than most people realize and sends a positive message.  He believes it helps someone at a job who has not disclosed their autism diagnosis to their employer and co-workers not have the stigma of this condition.  He also implies that stigma rather than disability or impairment is what limits opportunities for those on the spectrum.  He believes that it will build greater tolerance of autism. I don't think most people will actually believe the comedian has any sort of ASD and autism is still autism, Ari.  It's still going to disable people from working, finding relationships, etc.  Whatever stigma exists is still going to be there.  People still won't tolerate behavioral problems from autism, including the neurodiversity movement's opinions of people like Christian Weston Chandler.  Loud voices, poor social skills, meltdowns in public places will still exist and Seinfeld's comments won't change that.

Author and autism advocate John Elder Robison  has also gotten into the act  in the linked essay he wrote for his Psychology Today blog.  He states that he believes it's a good thing that important, well-known people identify with autism and he elaborates.

Mr. Seinfeld’s speculation that he “may be on the spectrum,” may be the first step in an actual diagnosis or evaluation, and it may be a milestone of his journey of self-discovery. Many people are critical of self -diagnosis, but the fact is, most adult diagnoses start by people asking themselves, “might I be autistic?”  Seldom are adults handed this diagnosis out of the blue.  So before we attack self-diagnosis let’s remember that’s how “real diagnosis” begins for many adults.

Somehow I doubt that Seinfeld will see a psychologist or psychiatrist for a formal diagnosis as it does not affect his abilities in any way and he would have sought professional help for his lack of social understanding and taking things literally if he'd thought it were warranted.  The same is true of  neurodiversity poster boy Vernon Smith who self-diagnosed himself with a Simon Baron Cohen AQ quiz.  Yes, I'm critical of self-diagnosis, because until someone is diagnosed by a trained clinician, that's all it is, a self-diagnosis, even if people start out with that and it remains so until validated by a professional.  It trivializes people who really have the condition and suffer.  I wonder about the people who never received diagnosis until adulthood.  Were they nonverbal as children, didn't their parents know something was wrong with them?  Did they attempt to get a diagnosis for something even if they're middle aged in a time that diagnosis was not well known?  These are points to ponder.

I won't comment on Robison's other talking points further, as they are the same old, same old and I've discussed them previously.

Such insensitive commentary is par for the course from both Ne'eman and Robison.  We've been hearing this stuff from them for years, so it comes as no surprise.  But what about other people whom Gadfly believes should know better?

Liz Feld, president of Autism Speaks had the following to say:

 “there are many people on the autism spectrum who can relate to Jerry’s heartfelt comments about his own experiences.” 

To me, this is an insensitive statement since Jerry's rational for believing that he's on the spectrum certainly doesn't reflect with diaper wearing head bangers or even the much higher functioning people who actually have legitimate diagnoses who can't hold down a job or get a date.  But I suppose I shouldn't be surprised at this statement from an organization that would have John Elder Robison on their science advisory board, fund Laurent Mottron and support Alex Plank's Autism Talk TV.  However, autism speaks does promote the idea that they're interested in curing autism on their walks and fundraisers and on their web page (Though I'm wondering if they really feel that way) so don't know why they'd trivialize the condition that they want to raise money to understand and ameliorate.

Autism Society of America President Scott Badesch also commented

Recently, Jerry Seinfeld is suggesting he might be on the autism spectrum. For so many of us, Jerry has been an amazing person who has made us laugh and taught us many lessons about life.
He is a wonderful person and if he is in fact an individual on the spectrum, we are delighted that he will be an example for everyone to see the beauty, intelligence, skill, and everything else that defines so many who live with Autism Spectrum Disorder.

There is nothing beautiful about autism.  It is a horrible disorder that afflicts people in a pernicious manner.  It is disappointing that the leader of a large Autism group would say things like that, but I suppose I should not be surprised that an organization that would support Ari Ne'eman being on the National Disabilities Council and have Alex Plank has a keynote speaker at one of their conferences.

As I said before, Ne'eman and Robison's insensitivity are par for the course for them so not quite as shocking.  But it is hurtful (at least to me) that these other two organizations who I'd think would be interested in helping people afflicted with autism would make such cavalier statements.  


Friday, November 7, 2014

Seinfeld on the autism spectrum?

Renowned comedian Jerry Seinfeld has apparently recently decided that's he's somewhere on the autism spectrum.  The reason is that he does not pay attention to the right things, takes things literally and has trouble with "social engagement".  I'm not sure what that term means, but I presume it's his ability to relate to people and make friends and find significant others, which is frequently if not almost always impaired in autistic people. (I'll discuss this further later in the post).    Mr. Seinfeld has apparently diagnosed himself rather than bothering to consult a clinician.  One of the reasons for this may be that he seems to believe his autism is not a dysfunction but an alternative mindset.  He joins John Elder Robison in insisting that he's on the autism spectrum in spite of not having a disability of any kind.  This makes his belief similar to what members of the neurodiversity movement have been saying about autism for years.  Or that it is only a dysfunction because it is not adequately accommodated.

Will ASAN, the Thinking Person's Guide to Autism and other pro-neurodiversity organizations adopt Seinfeld as one of their own, ask him to endorse their cause and help them raise money?  The answer is not entirely clear since about five years ago or so, Mr. Seinfeld along with Bruce Springstein hosted a benefit for autism speaks and helped them raise nearly two million dollars.  This contrasts with the nearly fifteen thousand dollars that ASAN lost in one of their fundraisers not long ago.  Because of this, Seinfeld and Neurodiversity  had previously been at loggerheads as I've written in the linked post.  In the post I linked to a video that ASAN made in which Seinfeld is harassed by various ASAN members as he enters the concert hall in New York City to give his Autism Speaks benefit performance.  Unfortunately, this video has been made private on youtube and can no longer be viewed by the general public.  Of course, AS put Robison on their science advisory board, funded Alex Plank and Robison junior's Autism Talk TV and gave half a million dollars to neurodiversity scientist Laurent Mottron.  So, I suppose I should not be surprised if Seinfeld decided to do a benefit for ASAN.  It is certainly a fund raising idea for Ari Ne'eman to think about as he may not be able to afford to give himself another 62% annual salary increase if ASAN can't think of a way to raise additional revenue.  Perhaps Mr. Ne'eman will consider getting Jerry to switch over from autism speaks and give a benefit for ASAN.

Neurodiversity has never cared about people diagnosing themselves.  Economist Vernon Smith diagnosed himself using a self-administered quiz, yet that has not stopped them from promoting him as an example as to why autism should not be cured.  As well as using him to claim autism has some sort of benefits to society.  

Since Seinfeld and I are almost the same age, I wonder how he'd have felt if he had to attend special education schools (and sometimes being abused there) in the sixties.  If he'd had to spend more than ten years in psychoanalysis because Bettelheim's theories were in vogue at the time.  How he would have felt if he had a phobia of birds, had been a chronic bedwetter until age 13 and could not get things done during the day because he was compelled to engage in twiddling (or some other self stimulatory behavior)  I wonder if he had the same rejection from peers as I did as a child or how he'd feel if he had.

Seinfeld claims that he has trouble with social engagement.  I wonder why this did not impair his ability to meet and date women and eventually marry one.  One way that we are different is in popularity with women.  I'm nearly Seinfeld's age, and though I have some casual dating with women, i've never had a full-fledged girlfriend.  Seinfeld in his late thirties dated Soshana Lowenstein who at the time was only seventeen when she first started going out with the celebrated comedian.  Next came girlfriend Carol Leifer.  Seinfield finally settled down and married Jessica Sklar at the ripe age of forty-five. 

As for a contrast in our abilities to support ourselves, I no longer work and am supported by family in contrast to Seinfeld who has made millions.  I wonder how Seinfeld would feel if he had to spend more than four years unsuccessfully trying to get disability and know that he'd end up being homeless if he didn't have a supportive family. 

Interestingly, Seinfeld is admired by an individual on the autistic spectrum who has also been quite unsuccessful with women and has gone out of his way to advertise for a girlfriend, sometimes in a crude manner.  Christian Weston Chandler has made a you tube video in tribute to the comedian he admires.  Chris Chan has often been a foil for various members of the ND movement.  I've written about Chris previously.  I never really understood why the neurodiversity movement always preached for acceptance of autistic individuals yet a good number of them always wanted to criticize this individual or even ridicule and make fun of him.  The fact that he's such a huge fan of Seinfeld's might discourage ASAN from approaching the comedian to do a fundraiser for them, but I don't know. 

Compared to most on the spectrum though, I've had it quite good and have worked in the past and am pretty high-functioning though it has impaired my life to a significant degree.  There are others with intellectual disabilities, who can't talk, engage in self-injurious behavior and smear feces on walls.  I don't think it is helpful for celebrities such as this man to trivialize this condition which affects so many people.