“Your child has autism… I’m sorry.”

There’s a lot of buzz in the autism community right now regarding a recent statement from Autism Speaks co-founder Suzanne Wright and the subsequent resignation of author and Aspie John Elder Robison from his position with the organization.

At issue is the treatment of people with autism. Wright and Autism Speaks frequently talk about how autism destroys families, how it sucks the money, energy, and life out of every family affected by autism, and how it has to be stopped.

There is NO DOUBT that families raising any kind of special needs child are seriously stressed and need all the support they get. The problem is, the way Autism Speaks presents it, the child is evil, destroying its family, and ALL children with autism are severely disabled. Understandably, high functioning folks with autism are a bit offended by this.

Autism Speaks is continuing to promote the myths and stereotypes that make it even more difficult to raise a child with autism, and what we really need is tolerance and understanding (and, yes, more money, better support programs, and research to help treat those with particularly challenging symptoms).

My journey with autism started thirteen years ago, and the script could have been written by Autism Speaks… my son was struggling in school. A team of specialists evaluated him, and we had our meeting. I was on board; I loved my son and wanted to find out what I could do to help him.

They described their findings and said, “We believe he has autism. You should look into something called Asperger Syndrome.”

And then one of the specialists placed a sympathetic hand on my shoulder and, in a sad voice, said, “I’m sorry.”

Wait. What? Asperger Syndrome – never heard of it, but I can look into it – but why is this behavior specialist expressing sympathy to me as if someone in my family had just died???

I loved my son. I knew he had potential. And I was not about to write him off. But everyone in that room treated me as if a huge tragedy had just occurred. Autism. Evil. But I knew my son. I recognized his diagnosis for what it was – a tool!

Yes, a home with an autistic child contains a lot of stress – but a lot of the stress comes from financial challenges, scheduling challenges, support challenges, and lack-of-tolerance challenges. Huh. Those are all caused by other things – other people, lack of resources, lack of understanding. Autism wasn’t evil – and my child certainly wasn’t to blame!

Bottom line is that autism is a challenging condition, but children with autism can be taught, and a significant number of the children being diagnosed today are not severely affected. It may seem like the end of the world when your six-year-old is failing first grade…

… but thirteen years later, that child is now a sophomore in college, living on campus in another state,  and he made the dean’s list. I couldn’t be more proud!

 

(I wrote my mystery novel, Asperger Sunset, as an exercise in explaining, in story form, what it is like living on the high end of the spectrum… it’s available in paperback and Kindle, from Amazon.com – and if I were independently wealthy, I’d send a copy to everyone involved with Autism Speaks!)