In case you didn't know, April 2 is World Autism Awareness Day. We are supposed to wear blue ribbons, put blue light bulbs in our porch fixtures and spend the day thinking about autism. 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).
Cartoon by Marcia Liss
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 Dustin Hoffman in the movie Rain Man. It made 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 program on her iPad and the other struggles to answer routine questions. But they do have empathy and strong emotional connections. Perhaps too strong.
There is a theory of autism developed by two neuroscientists, Kamila and Henry Markram, called the Intense World Theory. They ask us to do the following:
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 people with ASD may appear to lack emotion, the Markrams' theory is that they are actually overwhelmed not only by their own emotions, but by the emotions of others. That theory 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, 2015, 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 part of my day helping my daughter by taking one of the twins to occupational therapy. I will be delighted to see her smile when she greets me, and be so proud of the progress she demonstrates in the activities there. I will enjoy doing the "Miss Mary Mack" hand clapping game with her twin sister. After school and therapy, we will all try to enjoy one of the first decent weather days in a while.
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 I wanted 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 Grandma," there are no sweeter words.
A version of this appeared in ChicagoNow on April 2, 2014.