In My World, Every Day is Autism Awareness Day

Published in ChicagoNow, April 2, 2018

Today is World Autism Awareness Day. 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 fall under the broad autism 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 1988 movie Rain Man, featuring Dustin Hoffman’s portrayal of Raymond, a man with autism. Raymond is an institutionalized autistic savant who is able to count the number of toothpicks that fall from a box to the floor by simply looking at them. When the twins received the ASD diagnosis, 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 device and the other struggles to answer routine questions. But they do have empathy and strong emotional attachments. Perhaps too strong.

There is a 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...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 in varying degrees and manifesting itself in a wide variety of behaviors. And we are in the early stages of understanding it. Thus, the puzzle-ribbon logo. On World Autism Awareness Day 2018, 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 enabling my daughter to work by taking one of the twins, whose school has a different spring vacation from her other kids, shopping for an eighth-grade graduation dress. I will be delighted to see her smile when she greets me and enjoy our time shopping and going out to lunch. When her sister gets home from school, I will happily do the “Miss Lucy Had a Baby” hand clapping game she loves. Later this week, I will take one of them to speech and the other to occupational therapy. This has been our routine for years.

I don’t need to wear a ribbon and I can’t reach the lightbulb on my porch to change it to blue to remind myself 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 Gramma,” there are no sweeter words.