A few years ago, I wrote a blog entry titled 7 Misconceptions About Synesthesia. When I penned this listicle, I had no idea it would become the most popular post on my website. It’s been viewed thousands of times by readers from numerous countries. I’m thrilled that “7 Misconceptions About Synesthesia” feels relevant to so many people; this engagement helps me recognize that my advocacy for neurodivergent traits has value, at least for some people.
With that in mind, I’ve been mulling over the misconceptions people have about Tourette Syndrome. This neurocognitive difference creates plenty of conflict for the people like me who have TS; yet, much of that friction is, in my opinion, fostered by the ways that Tourette is misunderstood. So let’s debunk 7 misconceptions about Tourette:
- Tourette syndrome is a mental illness: This is the most frustrating misconception about TS. I think we are in a watershed moment in regard to mental health and neurodivergence, and I am confident that some conditions that have been understood to be illnesses may be better categorized as variations in cognition, sensation, and/or processing of stimuli. That said, Tourette Syndrome is a neurodevelopmental difference, and not a mental illness. It can cause considerable distress for those of us who have TS, and some of us will benefit from medications that diminish the frequency of our motor and vocal tics. But at the heart of it, TS appears to be mediated by genetic, environmental, and autoimmune factors that impact neurodevelopment.
- TS is really rare: I think of Tourette as an unusual, but not a rare condition. According to the United States National Institute of Health (NIH), about 1% of the US population has TS. Similar fractions of the general population are easier to recognize. Approximately 1% of the global population has naturally red hair. The percentage of individuals who use a wheelchair for mobility is estimated a 1%. Heterochromia, the phenotype that confers 2 different eye colors in one person, is also about 1% of the population. Tourette may be uncommon, but it’s not rare. What does this mean? You’ve probably met someone with Tourette Syndrome.
- Screaming expletives is the hallmark of Tourette: There’s a name for the uncontrollable utterance of curse words: coprolalia. About 20-30% of individuals who have TS will experience coprolalia at some point. It tends to peak in adolescence, then wane. However, coprolalia is over represented in media depictions of Tourette Syndrome; in research conducted by Samantha Calder-Sprackman, Stephanie Sutherland, and Asif Doja published in the Canadian Journal of Neurological Sciences, movies and television shows give an overall misrepresentation of TS, with coprolalia overrepresented as a tic manifestation.
- Tics are a failure of will; people with TS just need to try harder to control their tics! You know that saying that if you put your mind to it, you can do anything? That doesn’t apply to Tourette Syndrome. The intensity of the urge to either move (motor tics) or make a sound (vocal tics) is overwhelming. Imagine that you have an itch to scratch…a mosquito bite, or a hive…and the sensation to scratch cannot be contained. So you scratch your itch and you feel better for a moment, but then the itch starts again, and you’re scratching once more. That’s what Tourette Syndrome feels like to me. It’s a quest for relief; I simply must make the movement or the vocalization to let off the unbearable sense of pressure.
- Tourette Syndrome is tics-a-gogo 24/7: I’ve been deep diving into neurodivergence long enough to know that there’s plenty of outlying terrain within neurodivergent communities. The vast majority of people with TS do not constantly manifest tics, although some of us do. And, most people with Tourette will have increased symptoms when we are tired, anxious, overwhelmed, or experiencing other psychosocial pressures. But even under duress, when tics are more likely to manifest, most of us do not tic nonstop.
- Tourette is hilarious! “I keep randomly shouting out ‘broccoli’ and ‘cauliflower’ – I think I might have Florets.” Swedish comedian Olaf Falafel launched this one-liner at the 2019 Edinburgh Fringe festival, where it was voted the funniest joke. I can almost laugh at the floret joke, but “Tourettes without Regrets” makes me cringe. Tourettes Without Regrets is (was?) an underground performance art show in Oakland, CA, just across the bay from my home in San Francisco. The project has recently changed its name to the Ruckus and Rumpus Revival, which is a good thing in my book. Imagine if the show had been called “Down’s Without Frowns”. Or “Games and Fun with Huntington’s”. Or “Cystic Fibrosis Without Neurosis”. To me, it’s just never cool to make sport of neurodevelopmental, neurocognitive, or neurodegenerative conditions.
- Tourette Syndrome is just a bid for attention: I was today years old when I learned that there’s such a thing as Tourette Tik Tok, where people share videos of themselves ticing. The social media traction of Tourette seems to be fomenting a surge in self-reporting of TS symptoms. There also seems to be a spate of TS mimics including @ticsandroses whose saga of Tourette chicanery is internet legend. Yes, there are Tourette’s fakers. But Tourette Syndrome is quite real. It’s also frustrating, embarrassing, isolating, mortifying, and interpersonally painful. I don’t speak for all people with TS; every neurodivergent person has their own path with their differences. Yet IMHO, Tourette sucks. I wouldn’t wish it on anyone.
I hope this listicle sheds light on what it’s like to have Tourette Syndrome, otherwise known as Gilles de la Tourette’s Syndrome, Tourette, Tourette’s, or TS. I also hope that, as you walk through this world, you recognize that those of us with Tourette are everywhere. Imagine you’re at a concert, or participating in a religious service, or dashing through an airport to catch a flight, or languishing at the DMV as you renew your registration, or at your child’s elementary school watching a performance. There’s probably someone in your vicinity who has Tourette. You may not notice our tics, or, maybe you do. Maybe we seem strange, or perhaps nothing seems amiss. But please know we are everywhere.
Think of it this way: the next time you are in a crowded environment and you see a kid with bright ginger hair, a color that represents about 1% of the population, know that there might also be a person nearby with Tourette. Or, the next time you see someone using a wheelchair for mobility, an easily identifiable support that helps about 1% of the US population, know that you’ve probably not seen the person with TS who might have been right next to you. Approximately 80 million people in this world have Tourette Syndrome, and chances are good that you have encountered someone with this neurodevelopmental difference. If you think you’ve not met a person with TS, I’ll make it straightforward. Hi! My name is CC Hart and I have Tourette.
