Being Aware

Each year, I link a blog post on Facebook and call Tourette Syndrome Awareness month a success. In my mind, I check it off the list. I spread some awareness, time for a break—a 364-day break, well earned, I need the rest. Last year I linked my thoughts on the book Motherless Brooklyn, Jonathan Lethem’s story about a detective with Tourette. The year prior, it was that nonsense I wrote about Dominick the Donkey, a song always stuck in my head. Before that, a comic by Fish Lee. Right, I didn’t even create that one. As I did this each year, I thought, possibly, I could do more.

This year, I have. Tourette Syndrome Awareness month started May 15th. Inspired by some articles I read about Autism Acceptance Month, I vowed to step-up my game and do more.

Acceptance v. Awareness—where to focus? The autistic community made a shift over the past decade, a shift that I didn’t notice until this year. Autism Acceptance Month. Who isn’t already aware of autism? We all saw Dustin Hoffman’s sympathetic portrayal of an autistic adult in Rain Man, we get it. For decades, parents have tried to fix their autistic children. Instead, advocates now say, accept them, meet them where they are, don’t torture them by trying to change them.

But are we there yet? A friend described her son’s first pediatric appointment (only ten years ago) after his autism diagnosis. The doctor, fascinated by the diagnosis, wanted to know if the child did any ‘autistic tricks’ like math problems. We all know about the potential for savant attributes by autistics, but the rest? Are we ready to accept a violent grocery store meltdown at the other end of the aisle when we aren’t even aware that it’s fueled by autism?

I estimate Tourette Syndrome is decades behind autism in public understanding. We’re still waiting on our Rain Man. The movie version of Motherless Brooklyn? No way. No Dustin Hoffman. No Tom Cruise. Edward Norton stars—I don’t even know who that is.

Sophie, as a middle schooler, proclaimed that pineapple was the funniest word ever made. It worked as the punchline to any joke. Need a good laugh, blurt out pineapple. Tourette Syndrome occupies that same space. Comedians use it for a cheap laugh. Celebrities make egregious comments, when confronted, they joke that they have Tourette Syndrome. I can’t possibly count how many times I’ve seen foul language, or simply incongruous statements, explained away as Tourette. Even Stephen King, my favorite author, has twice (at least) used Tourette Syndrome as a punchline in his novels.

In Rain Man, a waitress handing Dustin Hoffman a toothpick, drops the just opened box on the floor. Toothpicks splatter everywhere. Hoffman stares at the pile and says “246 toothpicks.” Tom Cruise, noting that the box says 250 toothpicks on the side, is dismissive of Hoffman’s error. As they turn to walk away, the waitress notes “there are still four toothpicks left in the box.”

Tourette’s cussing is the equivalent of Dustin Hoffman’s toothpick counting trick. It serves as the stereotype but is actually rather rare.

In a small town like Gettysburg, it’s unlikely to encounter Tourette Syndrome in day-to-day life. Many of us with Tourette try our hardest to hide it. Those uncontrollable sounds and movements we make are often a source of embarrassment. The weird gestures and grunting noises, the strange faces and odd utterances are easily associated with the folks we see living on the fringes of society—the homeless, the mentally challenged, the mentally ill.

For awareness month, I hope to remind people that someone in their midst suffers from TS. I make those faces. I grunt. I blow air across my eyeballs. I do weird crap inside my mouth with my tongue. I get agitated, frustrated and embarrassed. I suffer from OCD and anxiety. I don’t cuss, except when I’m trying to make a dramatic point.

To expand awareness this year, I decided to parlay my employment with our countywide library system to help spread the word. A couple of years ago, the library was gifted lights to illuminate the columns of our headquarters building red and green during the Christmas season. Last month, we lit them blue for Autism Acceptance, I asked if we could change the color to teal starting on May 15. To give context to the people walking and driving by, I included a TS fact sheet in our weekly newsletter.

Do people notice this effort? A few might. As a final awareness effort, I’ll post this essay on Facebook where a handful of people might read it. Hopefully someone will learn something and maybe even share it. Small successes, incremental gains. Maybe one day, like our autistic neurodivergent cousins, we’ll be focused on seeking acceptance rather than awareness.

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