Been There, Done That, Got the T-Shirt – and Someone Finally Noticed!

I just finished reading Steve Silberman’s hefty hardcover, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. I started the autism journey over 15 years ago and a lot of the stories parallel my own.

When I first encountered the word autism, it was as if I had been handed a death sentence. The room got quiet, the social worker placed his hand on my shoulder and said “I’m sorry.” I was confused. I had seen the movie Rain Man and my kid wasn’t like that. What the hell?

One administrator, in a throw-away line that became a lifeline, said “Look into something called Asperger’s Syndrome.”

And we were off. Symptoms fit, therapy was set up to teach social skills and executive skills and now I have a senior in college. We’ve come a long way, baby!

NeuroTribes is a look at the history of autism. From Hans Asperger’s initial studies in pre-World War II Vienna, to Leo Kanner’s work in America, all the way up to groups and organizations hard at work today. Silberman isn’t kind to Kanner, suggesting he wrote a lot to advance his own career and he refused to acknowledge the lesser affected children until many years later. Asperger, on the other hand, may have painted too positive a picture when describing his charges, as the Nazis were seeking to eliminate imperfect people. In time, gas chambers were actually installed in hospitals and over 200,000 mentally afflicted people – many of them children – were murdered.

Throughout the book, stories of parents who refused to institutionalize their children echo over and over. It’s these parents who refused to believe the professionals who pushed forward to get education rights and therapy programs that fit and helped their children. Finally, in the mid-2000s, people with autism themselves got involved, fighting back when NYU’s Child Study Center posted billboards to recruit new study subjects: “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning. Signed: Autism.” The billboards were soon removed. Autistics had found their voice. And it was strong.

I was caught up in this sea of confusion. My son was never as difficult as other kids I had read about. Yes, he was prone to tantrums and craved routine and was deeply absorbed in clipping out the MasterCard and Visa logos from the phone book and taping them in a long line on the wall throughout our house when he was three years old. We knew he was different and had challenges but finding help was difficult. Six different diagnoses from six different professionals. Then we, too, like so many parents described in this book, found the Autism/Asperger’s trail. We got away from the stereotypes and found the real people underneath.

We’re still fighting stereotypes. Though Rain Man was wonderful at the time in that it introduced the word “autism” to the general public, it was hard for us because we weren’t dealing with issues that severe. We said “autism” and people refused to believe us. We heard all the hurtful comments, from “I’m sorry,” to “kids with autism are better off dead.” I became estranged from some family members because they refused to support us when we were struggling and later marked off my son’s success to “maturity.” Being early in the autism “epidemic,” I had to introduce the concept of non-Rain Man challenges to each and every Special Ed teacher along the way.

We’re winning, though. The biggest discovery over the years is that kids with autism, no matter how severe, can LEARN. They improve. They grow. What they need most is love and understanding.

Silberman talks about this in his book. He explains that neurodiversity has always been around and it should be treasured and celebrated and accommodated as needed.

Finally. Someone understands.

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One thought on “Been There, Done That, Got the T-Shirt – and Someone Finally Noticed!

  1. Sounds like a wonderful book and one all of us should read, even those of us – maybe especially those of us — who haven’t fought this battle. Thanks for a great post, Carol!

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