Tourettes

I remember watching Deuce Bigalow: Male Gigolo and laughing hysterically when Deuce picked up a date (played by the lovely Amy Poehler) who happened to have Tourettes Syndrome. In the particularly funny scene, Amy goes on a profanity laced tirade in the car, screaming epithets like “shove it up your ass!” or “ball sweat, anus!”

At the time, I didn’t know my youngest son, just a toddler when I saw the film, would later develop Tourette Syndrome, or that we would have to come up against this problematic and untruthful stereotype time and time again, in an effort to find acceptance for a disorder few know anything other than “Shit! Ball sweat!” about.

The diagnosis came in 2011, when my son was just about to turn 12. For the past few years he’d been dealing with strange, although easily explained symptoms that didn’t respond to treatment.

The first tiny window into the disorder came in 2006, shortly after my son fell awkwardly on a trampoline and strained his neck. For the next year he would whip his neck back, as if trying to pop it in an abrupt manner. When I took him to the doctor, they found nothing physiologically wrong, so sent him home with a neck brace and ibuprofen, though neither seemed to help.

Eventually, his neck-whipping faded and a different, seemingly unrelated symptom took its place. It was barely spring in North Carolina when my son took to sniffling repeatedly, as if his nose were a machine gun with unlimited ammo. This minor annoyance co-occurred with throat clearing, little “ahems” that eventually drove me nuts. Once again, we went to the see the pediatrician who said it was allergies and prescribed a once-a-day pill to control his symptoms. When that didn’t work, the doctor added a nose spray, too.

By the time my son was 9, he was labeled the mouthy-kid in class and teachers would call or email me, exasperated because my son would say humorous (although situationally-appropriate) words and phrases during instruction time.

It wasn’t until he was 11 that I noticed something strange. One evening while we were talking, I noticed the right side of my son’s neck was contracting, and the right side of his mouth and chin seemed to continuously grimace.

“What are you doing?” I asked him.
“I don’t know,” he replied.
“Well, stop,” I said.
“I can’t!”

After my son went to bed, I decided to play Dr. Google and figure out what was going on.

I typed: “grimacing, neck flexing, causes” into the search engine. Instantly, I was given link upon link for symptoms of Tourette’s.
I’m not going to lie, but my very first thought was “What? Tourette’s is the cussing disorder.”

I clicked the first, second, third down through the fifteenth link, and found, to my surprise, lists of symptoms that my son had been dealing with for years.

It turns out that neck throwing, flexing, grimacing, sniffling, throat clearing and other contortions are all common expressions of Tourette’s, and we had never put the pieces together.

I called my son’s doctor the next morning and scheduled a visit.
When he evaluated my son and listened to the list of symptoms, he gave a preliminary diagnosis of Tourette’s, but also a referral to a pediatric neurologist at Walter Reed hospital.

Less than a month after realizing my son’s strange, seemingly disconnected symptoms were most likely clues to a bigger issue; we were given the final, difficult diagnosis of Tourette Syndrome.

Like most parents do, I devoured information about the disorder in an effort to understand what was happening to my son, and why.
The hardest part wasn’t accepting that my son had a neurological disorder with no known cure, but the lack of understanding or compassion from others.

Teachers, even after they were informed of the disorder, took to pointing out my son’s odd movements in front of the class. One even yelled at him to stop, which he couldn’t. My son also continued to talk in class, and although it was not the same blurting commonly attributed to Tourette’s, it was a facet of his neurological problem, which makes filtering himself difficult at times.

Family was kind, but understandably clueless – thinking (much like I had) that Tourette’s was the funny disorder where you got away with cussing and gave everyone a good laugh. What they and the teachers and fellow classmates didn’t understand was how painful Tourette’s can be – with continuous, repetitive movements called tics, creating muscle strain and discomfort, and uncomfortable stares from strangers who genuinely have no clue why someone is making strange faces or gestures. In a sentence: the disorder is no laughing matter.
What started as a joke soon became a burden.

Over the past few years, I have had numerous heart-felt conversations with misinformed people about the realities of Tourette’s, and how difficult it can be to find understanding when the majority of people believe it is nothing short of hilarious, or worse: something that can be controlled.

The reality is that Tourette’s tics are as involuntary as blinking. Sure – you can try to prevent your eyes from closing, but in the end, your autonomic nervous system will take control and force them shut whether you want to or not. The same is true with breathing.
And the cussing? Well – that’s called coprolalia, and it is so rare, that only ten percent of Tourette’s patients exhibit the classic outbursts so fondly reproduced on the cinematic screen. Think about that. For every ten people diagnosed with Tourette Syndrome, only one will have repetitive vocalized outbursts (not always curse words, either) while the other nine will express the disorder through recurring movements.
When we go to the movies or watch television shows, ninety percent of Tourette’s patients are not represented even if the name of their disorder is. That’s got to change.

These days the vast majority of us know it is wrong to use the word “retarded” to allude that someone is slow or stupid, but we haven’t crossed the bridge where we know it’s not okay to blurt out curse words and happily suffix that with “I must have Tourette’s!”

Stereotyping a disorder is much like stereotyping an individual because it devalues the person. Oh, you’re Asian? You must be good at math. Oh, you’re Mexican? You must be here illegally. Oh, you have Tourette’s? You must blurt out cuss words all day long. See how disturbing that actually sounds?

So I ask you, readers, the next time you hear, see or are compelled yourself to misuse the Tourette’s label, think about my son, about stereotypes and media misrepresentation. Allow yourself to discover what something is before laughing at it, and open the door for more dialogue about this widely misunderstood syndrome.

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