When Every Day is Autism Awareness Day

Posted in ChicagoNow, April 2, 2014 (cartoon by Marcia Liss)

Imagine my surprise when the Today Show announced today was World Autism Awareness Day. “Everyone wear blue,” Matt Lauer cheerfully proclaimed, displaying a cute blue ribbon in his lapel. Well, I guess it’s a good idea to have a special day for autism since one out of every 68 kids in America is now diagnosed as having Autistic Spectrum Disorder (ASD).

With odds like those, I suspect everyone knows someone whose life has been touched by ASD. I am the proud grandparent of twins who could fall under the ASD umbrella, but that does not really tell you who they are. As often stated in the autism world, “If you meet one person with autism, you’ve met one person with autism.”

When I used to think about autism, I pictured the movie Rain Man. It makes no sense to me that my grandchildren, who are so affectionate and connected with me, fit that model. True, their language is severely impaired. Yes, one uses an augmentative communication devise and the other struggles to answer routine questions. But they do have empathy and strong emotional connections. Perhaps too strong.

There is a new theory of autism developed by two neuroscientists, Kamila and Henry Markram, called the Intense World Syndrome. They ask us to,

“Imagine being born into a world of bewildering, inescapable sensory overload, like a visitor from a much darker, calmer, quieter planet. Your mother’s eyes: a strobe light. Your father’s voice: a growling jackhammer. That cute little onesie everyone thinks is so soft? Sandpaper with diamond grit. And what about all that cooing and affection? A barrage of chaotic, indecipherable input, a cacophony of raw, unfilterable data.

Just to survive, you’d need to be excellent at detecting any pattern you could find in the frightful and oppressive noise. To stay sane, you’d have to control as much as possible, developing a rigid focus on detail, routine and repetition … The behavior that results is not due to cognitive deficits — the prevailing view in autism research circles today — but the opposite … Rather than being oblivious, autistic people take in too much and learn too fast." While they may appear bereft of emotion, the Markrams insist they are actually overwhelmed not only by their own emotions, but by the emotions of others.

That seems to fit one of the twins perfectly, but how to explain the other? The point is, autism is a broad spectrum affecting many children. And we are just in the early stages of understanding it. On World Autism Awareness Day, 2014, we are still putting out the fires, addressing the symptoms as best we can without understanding the underlying causes.

For me, April 2 is just like the other 364 days this year. I will spend the day helping my daughter take one of the twins to art class. I will be delighted to see her smile when she greets me, and the beautiful art she creates. I will enjoy doing the “Miss Lucy Had a Baby” hand clapping game her sister loves. We will all try to enjoy one of the first decent weather days in a while, as there is only a half day of school.

I don’t need to wear blue to make myself think about my grandchildren and the many others like them struggling to make sense of the world. But today I want to remind you that they are so much more than a statistic. They are beloved big sisters, daughters, and grandchildren. They are much more capable than they appear to be. And when one of them declares, “I love you Grandma,” there are no sweeter words.