Autism and Celebrity

by NMSilber

Here’s a conversation starter you never hear in social skills class. What do Jenny McCarthy and Temple Grandin have in common?  No, it’s not the PhD. or  the fake boobs.   They are both celebrities who have come to be associated, in the minds of many Americans, with the autism community.  Note, I mention the “autism community” and not the “Autistic community.”  And who are these folks with their capital “A” and lack of an “ism?” Are you sitting down?  They are grown-up people on the autism spectrum.  For real.  This may come as a shock, but there is in fact an entire group of autistic people older than  Max on Parenthood.  People frequently don’t realize this, however, because the “face” of autism will forever be some tow headed little cherub who allegedly has been “lost” somewhere.  (Perhaps if they checked the swings.)

These Autistic adults are a quirky bunch.  They tend to not appreciate it when people refer to them as diseased, damaged, or defective.  They don’t like not being included in conversations about them.  They would like to be able to decide for themselves what is their own best interest.  They are demanding all sorts of crazy things like equal access to education and employment, good supports … respect.  And worst of all they don’t even appreciate the efforts to “cure” them, let alone to find a good prenatal test to assure that people like them are never born in the first place.  But don’t they know that they are part of a “tragic epidemic,” they are a blight on society, that they make their happily married parents get divorces, that they are cold unfeeling beings, that they cause cancer?  Apparently they haven’t been watching the nightly news.

Love them or hate them, these folks are who that little cherub is going to grow up to be someday.  They are actual autistic people and other people need to understand their experiences and their perspectives.  Who better to assure that happens than a celebrity right?  After all, they are experts on everything.  I don’t think that anyone who hasn’t downed a bottle of cheap gin would suggest that Jenny McCarthy speaks for adults on the spectrum so I won’t even go there.  I do find it interesting, as an aside, that many people fail to realize is how little she has in common with the mothers of autistic children who aren’t, say, Playboy models.  While you fight your IEP battles and beg your county for an aid so that your child can attend summer camp think about how much therapy all the revenue from those books could buy.  Jenny is paying for her kid’s therapy with your kid’s therapy money.  But if the books stop selling she can always get naked again “for autism.”

But Dr. Grandin is no Playboy model.  That’s true.  She designs livestock equipment.  And she herself is on the spectrum so surely she must be an expert?  Someone obviously thinks so.  Her endorsement is on every book ever written about autism except for Jenny’s. She is the “go to” person for quotes, soundbites, even HBO movies.  Don’t get me wrong.  I sincerely think that it is great that she has shown people that autistic individuals are not all Rain Man clones.  But does she really speak for other autistic adults?  Perhaps those who were born to wealthy parents in the 1950’s.  If you didn’t have your own nanny to play with you, or attend an elite boarding school, or intern on a working ranch you may see things through a different lens.  If say you were, oh I don’t know, poor, your experiences may have been different.  A lot of autistic adults aren’t in a position to access a doctoral program.  A lot of autistic adults aren’t in a position to access a doctor.  In the climate of discrimination created when an entire group of people is systematically devalued thanks to images of them being damaged, defective (see above) … well, a PhD., or even employment, isn’t always in the cards for a lot of autistic folks.  Maybe it’s time to let the Autistic community find it’s own voice rather than having someone else speak for it.