My Contribution to Autism Awareness Day: A Couple of Must-Read Links

You may know our son is on the autism spectrum.  This is not an easy thing for our family.  We love him dearly.  He is a wonderful, intelligent kid with the best sense of humor, but his autism presents challenges which are often beyond our understanding.

There are many controversies currently raging in the world of autism.  "What causes it?" seems to be the number one question.  Then there is: "is there really an epidemic going on or are we just getting better at diagnosing this condition?"  And also: "What can be done about it?"

I'm not about to answer any of those questions, though of course I wonder about and read about them all the time.  You will not find me cheerleading at any Autism Awareness Day events, or fundraising for research, or doing much of anything but daily.living.with.autism. right now.

I just want to share a couple of really excellent links that I read today, about autism and Autism Awareness Day.

The first is from The PLoS Blogs: Diverse Perspectives on Science and Medicine.  It is by writer Steve Silberman and titled Autism Awareness is Not Enough: Here’s How to Change the World.  There is a LOT of good stuff in this article, and Silberman includes contributions from many knowledgeable people who are working and living with autism.  Here's a quote that matters a lot to me:

No matter where you stand on the rising numbers, there is one undeniably shocking thing about them. Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities. 

Meanwhile, the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by. At the extreme end of the risks they face daily is bullying, abuse, and violence, even in their own homes.

The second post I share is from TheAutcast, a blog written by autistic self-advocate Landon Bryce.  Landon has increasingly won my respect, after starting out kind of rockily (because he sometimes comes across as abrasive), for consistently speaking out for people with autism, for having good ideas on how to respect people with autism, and for showing his own mind opening as he learns more about the condition which he not only has himself but about which he writes and speaks so well.

In this post, Landon explains what some science is finding and that is that the number of people on the autism spectrum has remained about one percent (1%) through generations.  This is, of course, up for discussion and controversial right now.  He believes that yes, we are getting better at diagnosing autism because of more awareness.  AND, he acknowledges that children on the spectrum seem to be more disabled by it today.  The post references a PBS NewsHour show and is titled "PBS NewsHour on Autism: The Environment Is More Than "Toxins".  He acknowledges the role that both chemical toxins and, an interesting twist, social toxins as in all the "screen time" we get today, have in causing this disabling trend.  He explains it well so it's best to read the link.  

I found both of these posts so fascinating, and think they should be shared and read widely.

I will add only ONE opinion of my own, and that is that I feel and have seen that there IS a bio-medical component to autism and I believe that, while I would not take away the wonderful and unique qualities my son has, I would like to have been able to take away the digestive pain he had as an infant and continues at times to have today.  Diet and lifestyle can make a big difference in the quality of life for people with autism.  This is very common among people on the autism spectrum, and I believe strongly that at least THIS part of the condition can be changed, and can have affects on the brain functioning as well.  Science knows that physical health can have great affects on neurological health, and we need to acknowledge this and fund it now. 

For me the number one question regarding autism is this: What can we do for people with autism so they can lead healthy, happy lives of purpose in our world?