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.

“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!)