Friday, November 22, 2013

Autism's Couture

For the last ten days the world of autism has been abuzz with Suzanne Wright's call to action for a national plan dealing with autism.

Autism groups and parents everywhere have met Ms. Wright's letter with scorn and offense, saying that Ms. Wright's claims of suffering of both people with autism and their families doesn't encapsulate autism.  In particular, neurodiversity groups have gone on full range assault stating that millions of autistic people have succeeded and are happy, in spite of their challenges.

Don't even get me started on all the criticism of Autism Speaks.

While this debate, and many others on autism rages on, beautiful moments like this one are happening.  Kids (and adults) on the spectrum are finding their gifts, becoming successful and finding a place to belong.

I must say that while I have opinions on all of autism's debates and at times, when I am feeling particularly feisty will sometime engage in tearing someone a new one civilized debate, at the end of the day what truly matters is our particular brand of autism and how I can help my daughter be the best she can be without killing off her joy in the process.  Besides,  autism looks different on just about every person on the autistic spectrum, therefore there cannot be one point of view, one organization, one form of treatment that can address all people on the spectrum.

Ultimately, there is room for all these points of view.  Just because I have a child with autism doesn't mean that I know what is best for someone else's child.  Hell, I am not even sure that I always know what is best for mine.

And that's the thing about autism.  There is no buying off the rack.  It's designer all the way.

It's a custom made enterprise, with lots of different designs, fabrics and colors.  You have to go through a lot of try-ons before you find something that fits.  Sometimes you need to throw out your stylist and go for a new look.  On some, it looks wonderful, and enticing, on others you end up looking like Bjork in a Pelican dress.  Sometimes the one that looks beautiful on one, looks like a burlap bag on another.

For some, it seems like nothing will ever fit like a glove.

So, while Autism Speaks is not my favorite organization out there, and I sometimes have a problem with the stand neurodiversity takes, and I am not a GFCF advocate,  I think it is good that we have all these different types of organizations out there because our autism probably doesn't look like yours and what we need is different than what others need.


  1. Too true. Have you read John Elder Robinson's latest post? Such a wise man.

    P.S. Do you ever reply to comments? ;)

    1. I am very bad at replying to comments, I'll admit it! I am often very late. I reply much quicker and more consistently to FB comments. Sorry. I love JER.