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.  



Anonymous said...

Thanks for being a voice of reason and real experience. I have a non-verbal child with classical autism and I am disheartened by the stridency of these neurodiversity advocates all over the net. A parent with a severely autistic child with seizures (my child has those too) has a blog and he commented similarly about the Seinfeld story. A group of these neurodiversity sorts have flooded the comment section with really offensive and ill-informed diatribes and advice. They suggest that the parent try facilitated communication and brand him as someone who thinks his child is "broken." You know the rhetoric. They seem to be incapable of understanding that we are caregivers whose children don't have the desire to pursue communication as they do; that is a reality of the disorder for some. Of course, we have tried it all and heard it all. They aren't delivering any sort of revelation to us and actually reveal that they have had little to no meaningful contact with severely autistic people.

I find them obnoxious. They are bullies and high-functioning enough to do something about it if they would (highly doubtful as their identification seems to give them license to say whatever they want to with no authority at all).

Whew! Thanks again. I don't believe that Seinfeld is on the spectrum at all, but I do like him better than some of these advocates..

Unknown said...

The Seinfeld-Descartes Autism Diagnostic Tool:

"I think I am Autistic therefore I am Autistic"

Anonymous said...

prisoner with autism, serving life w/o parole, writes a blog:

Unknown said...

Jerry should live in Northern Ireland where we have "autism spotters". Yep, people with autism can be spotted by their 'honest', their lack of interest in others, their inability to listen to a conversation and so much more.

Please read blog post in link below and feel free to comment or make your concerns known to the charity Autism NI in Belfast. We don't need any more stereotyping. P.S. Love your blog!!