Hi! My name is Vika Flanagan-Grimsrud and I’m part of the Therapist Support staff at Emerge Pediatric Therapy in Carrboro.
Gilles de la Tourette Syndrome, aka Tourette’s, is a neurodevelopmental disorder onset in childhood and generally amping up through the course of puberty, in which a person experiences a combination of both motor and vocal tics.
When I was diagnosed at 19 I was shocked at just how little I – and the people around me – actually knew about the disorder. I found that most people had at least heard of Tourette’s, but their exposure to it was almost exclusively from TV shows and movies – where someone’s overexaggerated and highly specific tics show impeccable comedic timing…While these portrayals aren’t exactly “wrong” they certainly don’t show the whole truth of how different people exhibit tics differently, and what it’s actually like to live with Tourette’s.
I’m here to address some of these misunderstandings and myths, share some facts and tips, and talk a little bit about my personal experience as someone with Tourette’s.
Wait…you have Tourette’s??? How come I’ve never seen you tic?
When I greet you at the front desk here in the Carrboro clinic, you may or may not have noticed some of my tics. Nowadays, most of my tics are small movements in my hands, face, or neck and little “sneezes” or sniffs. Although I used to experience more frequent and obvious tics, I’ve been able to lessen their intrusiveness with the aid of therapy and medication focused on reducing stress and coping with my other conditions, namely ADHD and OCD, whose symptoms influence my tics.
But don’t people with Tourette’s yell out swears and insults all the time?
Swearing, insulting, and otherwise offensive verbal tics are known as *coprolalia*, and contrary to popular belief (mostly thanks to media representation) coprolalia is not a defining symptom of Tourette’s syndrome. Although it’s certainly one of the most invasive and debilitating possible symptoms, only 1 in 10 people with Tourette’s ever experience it.
Coprolalia is arguably the most socially stigmatizing symptoms associated with Tourette’s Syndrome – the seemingly random and explosive outbursts of offensive language are generally outside of any social or emotional context, but are often interpreted as intentionally hostile by the public. It’s vital to remember that, regardless of the increased emotional affect, coprolalia tics are involuntary just like any other tic, and generally cause those who experience them extreme social anxiety, embarrassment, and guilt. A person exhibiting coprolalia has no correlation whatsoever with their intelligence or character; they need just as much understanding and compassion as anyone else.
Well if you don’t have to have coprolalia to have Tourette’s, what makes Tourette Syndrome different than other Tic Disorders?
Tics come in two forms: motor and vocal.
Motor, or physical tics, are shown as involuntary physical movements of a part of the body most commonly seen with the hands, neck, head, and face. Motor tics can include but are not limited to irregular blinking, hand flapping, jerking your neck to one side, clapping your hands together, and scrunching up your nose.
Vocal, or phonic tics, present as out-of-context or random sounds. Sometimes we can see these show up as coprolalia, but also more inconspicuous words or phrases. I had one phrase tic for a while where I would call out “No! It’s my cereal!”, often followed up by loudly whispering “silly rabbit.” But, vocal tics aren’t always words! Some common vocal tics we see can be tongue clicking, animal sounds, buzzing lips, sniffing, and humming.
The differentiating factor of Tourette’s versus other Tic disorders is seeing a combination of both motor and vocal tics, either separately or in sequence. The term “Tourette Syndrome” functions more as a way to categorize the kind of tics that are being experienced rather than indicate anything about the severity of symptoms.
How are these tics different from the stims of neurodivergent people?
Tics can present alongside a whole bunch of other co-occurring conditions, most commonly ADHD, OCD, Executive Dysfunction, Processing Disorders, and a number of others. Tourette’s Syndrome and other tic disorders can look like and frequently interact with these co-ocurring conditions in several different ways.
For example, if a person is overstimulated, dysregulated or anxious they tend to have more tics as their brain’s way of trying to “shake off” the discomfort. Sometimes tics can be misidentified as stimming, sometimes stimming is misidentified as tics, and in some cases it’s too hard to tell! Because of how frequently Tourette’s Syndrome and tics present alongside other forms of neurodiversity and how intimately intertwined symptoms can be, it’s important that those who work and interact with the neurodiverse community are aware of potential triggers and best practices for encountering someone who has tics.
Well…what is the best way to react to or talk about tics?
I can only speak to my experiences and preferences. For me, I am very open about my Tourette’s. I would personally much prefer someone ask me about a tic than stare at me like I have an alien growing out of my shoulder. My favorite way to describe tics, especially to curious kids, is like a hiccup or a sneeze. You don’t really hiccup on purpose, your body just does it. Tics are sounds or movements that I didn’t tell my body to do, but my brain did.
Just like with anything else, there is no one-size fits all approach. How you speak to and about someone with tics is unique to so many factors, including your relationship with that person, their personal feelings about their tics, etc. In general, if you’re unsure how to broach the subject I would recommend asking that person directly about what they prefer and what’s most helpful to them. If you don’t know that person well enough to initiate the conversation, then it’s likely that their tics aren’t for you to be talking about anyway….
Tics can sometimes have that fantastic comedic timing that we see on TV, but again they aren’t voluntary. It’s important to remember that even when tics are funny, loud, disruptive, or “weird”, the person having them doesn’t have any control over them. As people who tic in public, we see other people’s shocked looks, we can feel their discomfort, and we can hear their comments.
Tourette’s and other tic disorders are a lot more common than people realize. The Tourette Association of America estimates that 1 out of every 50 children between the ages of 5-17 in the United States has TS or another Tic Disorder. There is no cure for tics, but there are a plethora of treatment options, including Occupational Therapy and Speech Therapy, that can help kids with tics learn how to cope with their symptoms and thrive in their lives while embracing their differences.
For more general information about Tourette’s and tics, The Tourette Association of America is a fantastic resource to learn more. If your child is experiencing tics that affect their everyday life, feel free to reach out to us at Emerge to inquire about our therapy options and what we can do to support your family!