By Dan Coulter
he numbers keep rising.
I'm looking at an Associated Press news story reporting that the U.S. Centers for Disease Control and Prevention now estimate that 1 in 68 children in the United States is on the autism spectrum. The CDC started using its current method of calculating these estimates in 2007, when the number 1 in 150 emerged. In 2008, it rose to 1 in 110, then to 1 in 88 in 2012. Experts say the latest increase is likely due to more accurate diagnoses of autism that already existed.
Every time I read about these numbers, I think, “What's the tipping point? What will it take to convince our society we need to put more resources towards understanding autism and supporting people on the spectrum?”
I'm pretty much convinced it won't be news stories about CDC estimates alone. Logically, that should have happened already. I think the change will have to be led by people affected by autism, either because they're on the spectrum themselves, or they're close to those who are.
One of my concerns is for people who have Asperger Syndrome, also known as autism spectrum disorder - level one. There is so much potential for people with Asperger Syndrome to live productive, independent lives. Some are doing it now. So many others are so close. Often, it's a matter of the right education and training, enlightened hiring managers, and some easy to provide accommodations by employers. I've interacted with a number of people with Asperger Syndrome who, according to their bosses, outperform their neurotypical co-workers. And I've heard about many more.
The benefits to society far outweigh the investment. Isn't it better for a significant portion of the population to spend their adult lives working and paying taxes than not?
There are some great existing programs we can use as examples. My wife recently heard author John Elder Robison describe one he created that enables charter school students with neurological differences to serve as apprentices in his classic car restoration business. On John's blog, I read about the Monarch Institute in Houston, Texas. It's a therapeutic day school for students with neurological challenges that the local public school special education system wasn't designed to accommodate. John describes Monarch as a safe, magical place where the talents of neurodiverse children are developed and nurtured.
Since it opened in 1997, Monarch has added a diagnostic clinic that offers services across Texas, a residential program, and a training program to teach their methods to other schools. John makes the point that Monarch Institute has been funded entirely by families and donors. I think we need to use the success of Monarch and similar programs around the country as blueprints for initiatives in publicly funded schools that can serve the 1 in every 68 children who need them.
Of course, there are some superb public school special ed programs in the United States that provide comprehensive, well funded support to students with autism, but they are the exception and not the rule. Then there's the shocking revelation that children on the autism spectrum grow up. A fact that apparently needs to be pointed out in states where publicly funded autism services are abruptly cut off when a youth reaches “the age of majority.”
The way to make progress is to make autism advocacy a routine part of our lives. Becoming active in support and advocacy groups, generating positive media stories about people with Asperger Syndrome, and backing legislative autism initiatives are good starts.
There is power in numbers, and if we want to apply that power, we need to make sure the voices of those 1 in 68 children on the spectrum, and those who care about them, are heard. Think what it would mean to have an affordable, safe, magical place where the talents of neurodiverse children are developed and nurtured in your community. Or to have a neurodiverse-friendly job apprenticeship program available.
The numbers keep rising.
Let's use them to change the world for the better.
ABOUT THE AUTHOR – Dan Coulter is the author of “The Puberty Video for Boys with Asperger Syndrome” and 11 other autism related DVDs. You can find more articles and information on his website: coultervideo.com.
Copyright 2014 Dan Coulter Used by Permission All Rights Reserved