Despite having a background in behavioral psychology and a neurodivergent-heavy family, like most people, my knowledge of Tourette Syndrome was based largely on what I’d seen portrayed in film, television, and, I’m ashamed to admit, the occasional comedy sketch. Something involving lots of obscenities that was frequently played for laughs.
That was, until it entered my life.
Until someone I love deeply began developing multiple and varied tics — none of which looked anything like what I’d seen portrayed.
Fueled by love and with a career in scientific research behind me and a propensity to hyperfocus, I went down a long rabbit hole of research, reading, and listening. To clinicians, to people with Tourette’s, to families navigating the same bewildering early stretch that we were in.
What I found on that road shocked me. Not because Tourette’s turned out to be something rare or obscure. Quite the opposite. It shocked me because of how common it is, how poorly understood, and how systematically it has been left out of the conversations that have, rightly and meaningfully, expanded public understanding of neurodivergence over the last decade.
Tourette syndrome affects approximately 1 in 100 school-age children. That makes it roughly as common as autism. It is not rare, it is not obscure, and it is not only a condition that involves shouting swear words. And yet it remains one of the most misunderstood, most mocked, and most systematically excluded conditions in the neurodivergence conversation.
I want to change that.
The exclusion of Tourette’s from the conversation has real consequences: for diagnosis rates, for the children sitting in classrooms being told to stop doing something they cannot control, for the adults who spent their entire childhoods collecting the wrong labels, and for the families trying to navigate a system that wasn’t built with their loved one in mind.
Before we go further, an important caveat: nothing in this article should be used as a self-diagnostic tool. What it should do is open a door to understanding, to recognition, to compassion, and hopefully, for some readers, to finally having a framework that makes sense of experiences that never quite did before.
The coprolalia myth.
Only around 10 to 15 percent of people with Tourette’s have coprolalia. That is, the involuntary vocalization of obscene or socially taboo words and phrases. Which means that approximately 85 to 90 percent of people with Tourette’s never involuntarily swear at all.
Read that again, because it matters enormously.
The version of Tourette’s that lives in popular culture represents a small (but deeply affected) minority of the people actually living with this condition. And yet it has become so dominant, so deeply embedded in public consciousness, that it functions as a filter through which everything else about Tourette’s is misread or missed entirely.
Now, I want to be clear. The people who do have coprolalia are among those who face the most severe social consequences of any Tourette’s presentation, and they absolutely need their experiences to be heard and understood.
Involuntary (and it is involuntary) vocalization of obscene or offensive words in public, in workplaces, in shops, in quiet spaces has a social fallout that is significant, relentless, and frequently cruel. The words are not a reflection of the person’s thoughts, values, or intentions, but an involuntary output that is experienced as deeply shameful and distressing by the very person producing it.
As such, they deserve to have their experience taken seriously, spoken about with honesty, and met with genuine understanding rather than laughter or abuse. The problem has never been that coprolalia gets attention. The problem is that it gets the wrong kind. Comedy or blame and shame rather than compassion. And that by consuming it as entertainment, we have allowed it to eclipse every other presentation of the condition entirely.
The consequences of that eclipse are real. Children whose tics are entirely motor or who have vocal tics that sound like a hum or a cough are going unrecognized because the adults around them don’t register what they’re seeing as Tourette’s. It doesn’t match the image they have. Parents who have been worried for months, tracking something in their child they can’t quite name, mention it to a doctor, and are reassured it’s probably nothing.
And then there are the people with Tourette’s who don’t have coprolalia who disclose their diagnosis and are met with skepticism: “But you don’t swear.”
What Tourette’s actually is, and the spectrum it sits on.
There’s a saying in the Tourette’s community (that’s also used for autism), which is: “Once you’ve met one person with Tourette’s, you’ve met one person with Tourette’s.”
That’s because tics exist on a wide spectrum and present differently in each person, so keep that in mind as you read.
That said, there are certain criteria required to meet the threshold for a Tourette Syndrome diagnosis. It’s a neurodevelopmental condition characterized by multiple motor tics and at least one vocal tic, present for more than a year, with onset before the age of 18. That’s the clinical definition. But what does it actually mean to live inside it?
Well, tics are sudden, repetitive, involuntary movements or sounds. Motor tics might include (but are not limited to) a rapid eye blink, a head jerk, a shoulder shrug, a facial grimace, or more complex, often slower movements involving multiple muscle groups. Vocal (phonic) tics might include (but are not limited to) a throat clear, a sniff, a grunt, a word, or a phrase. They are not voluntary (which we’ll cover in more detail soon) — and that is central to understanding everything else about this condition.
It’s also worth knowing that Tourette syndrome sits within a broader category of tic disorders, and the boundaries between them matter less than the shared experience. For example, provisional tic disorder, persistent motor or vocal tic disorder. These are related conditions that belong in the same conversation.
Not everyone who experiences significant, life-affecting tics will meet the precise diagnostic threshold for Tourette syndrome specifically, and that shouldn’t place them outside the circle of understanding this article is trying to draw.
What places Tourette’s firmly in the neurodivergence conversation is this: it is not something that happens to an otherwise neurotypical brain. It is not a reaction to stress, a behavioral choice, or a result of poor parenting.
It arises from differences in how the brain develops — in the structure and function of the cortico-striato-thalamo-cortical circuits, if you want the neurological detail — and those differences are present from birth, even if tics don’t become visible until early childhood. The brain of someone with Tourette’s is not a broken neurotypical brain. It is a differently wired brain.
Tics typically emerge in early childhood, most commonly between the ages of 5 and 7, though they can appear earlier or later. They tend to increase in frequency and complexity through middle childhood, with tic severity being at its peak between the ages of 8 and 17. After that peak, the trajectory for many, though not all, is one of gradual improvement.
Tourette’s is also significantly more common in boys than girls, at a ratio of roughly 3 to 4:1. But (and this will feel familiar to anyone who has read about autism in women and girls) there is good reason to believe that girls are underdiagnosed, for reasons that echo across the neurodivergence landscape.
Girls tend to mask more effectively, present differently, and are less likely to be referred for assessment when their behavior doesn’t match the most visible, most disruptive stereotype of the condition. The diagnostic criteria were largely built on research conducted on boys. The result is a significant population of girls and women whose Tourette’s has gone unrecognized, sometimes for decades.
It doesn’t start with the tic itself.
Here is something that most people don’t know: for the majority of people with tics, the tic itself is not the beginning of the experience. It’s the end of it.
Most tics are preceded by what’s known as a premonitory urge. It’s an uncomfortable, building sensation that exists in the body before the tic is expressed. People who experience it describe it in different ways: a pressure that needs releasing, an itch that must be scratched, a feeling of something being very wrong that only resolves when the tic happens.
If you want to try to understand what it feels like, try to keep your eyes open for as long as possible. Eventually, you will feel an itchy, almost stinging feeling. Eventually, it will become unbearable, and you will have to blink.
That is a little of what the premonitory urge feels like. Now imagine that, sometimes hundreds or thousands of times a day, often coming thick and fast.
The tic, in other words, is relief. It is the end of a cycle of mounting discomfort, not a random explosion from nowhere. It is not a choice, any more than you having to blink when your eyes were itching was not a choice.
Understanding the premonitory urge reframes the entire experience of Tourette’s. It means that for many people with the condition, the internal landscape is one of near-constant low-level physical discomfort.
It’s a body that is perpetually signaling, perpetually demanding, perpetually negotiating. The tic is not the problem (or at least not the whole problem). The tic is the only available solution to the problem. And when you understand that, the idea of simply telling someone to stop (which happens constantly, in classrooms, in homes, in workplaces) becomes not just unhelpful but frankly absurd.
Tics hurt.
Imagine throwing your head backwards quickly and suddenly, hundreds, if not thousands, of times a day, every day. It would get pretty sore, pretty quickly, right?
Well, that’s what it’s like for many people with Tourette’s.
The discomfort doesn’t end when the tic is expressed. Repeated muscle contractions, for example, a head that jerks dozens of times an hour, shoulders that shrug hundreds of times a day, a throat that vocalizes almost constantly, cause real, measurable physical pain.
Chronic pain is extremely common in the Tourette’s population. And then there is the cruel irony that when a part of the body is in pain, it is more likely to tic. The very muscles that are sore and strained from ticcing become a more insistent source of premonitory urge. This drives more tics, which drives more pain, which drives more tics.
It is a cycle with no clean exit, and one that those living with it frequently describe as among the most exhausting and demoralizing parts of their daily experience. It is also one of the aspects of Tourette’s that is almost never mentioned in public conversation about the condition, where people still view it as something to laugh about.
But there is absolutely nothing funny about living in daily pain.
The confusion around tic suppression.
A lot of people confuse being able to temporarily suppress a tic with being able to choose whether to tic or not. They are absolutely not the same thing.
Some (but not all) people with Tourette’s can become somewhat skilled at holding their tics back in public, for a limited amount of time. Not indefinitely. Let’s go back to you holding your eyes open and trying not to blink. You can probably do it for a while, and some people might be able to tolerate that feeling longer than others, but eventually, everyone is going to have to blink.
Some people can learn to redirect some of their tics or partially cover them up with an additional word, sound, or movement that disguises the tic as something more socially acceptable. There are some behavioral treatments that can support people in learning these techniques, but it’s worth noting that this only serves to manage the social impact, not the underlying urge, which the person will still experience.
And again, personal ability to learn and utilize these techniques varies hugely, and it can vary within an individual depending on their physical and emotional state, too. And even if it is possible, it comes at an immense cost to that person.
Here is where the parallel with autistic masking becomes impossible to ignore, because the mechanics are remarkably similar, and the cost is equally real. The effort required to temporarily suppress, disguise, or redirect tics throughout a school day, a working day, or a social event is enormous. It draws on cognitive and physical resources that would otherwise be available for, say, learning, connecting with other people, or simply existing without chronic tension.
And then comes the rebound. When the person finally reaches a space where they feel safe enough to stop suppressing, the tics that have been held in tend to release with greater intensity than they would have if they’d been expressed naturally throughout the day. These people get no rest time because they spend half their time desperately trying to suppress, and the other half being bombarded with rebound tics.
It’s also worth noting that some people simply cannot suppress. Just like the variability in how long you can hold your eyes open without blinking varies, so too does the variability in whether you can delay a tic. Some people physically cannot, and it’s often those with the most severe presentations who can’t.
The other thing that confuses a lot of people is that tics wax and wane — that is the rule, not the exception. They change over time. New tics emerge, old ones fade. Stress, excitement, fatigue, illness, attention, anxiety (and much more) all affect tic frequency and intensity.
This variability is part of what makes Tourette’s so hard to communicate to others, and part of what makes the “but you weren’t doing it yesterday” response so particularly wearying to receive.
The co-occurring conditions.
If there is one thing I wish someone had told me earlier, one piece of information that would have reframed everything faster, it is this: for many people with Tourette’s, the tics are not the hardest part.
Approximately 85 to 90 percent of people with Tourette’s have at least one co-occurring condition. Let that number settle for a moment, because it is extraordinary. This is not a condition that exists in isolation. It arrives, more often than not, in the company of others, and those companions shape the daily experience of Tourette’s as significantly, and sometimes more so, than the tics themselves.
ADHD co-occurs in roughly 50 to 80 percent of cases. OCD in approximately 50 percent. Anxiety disorders are extremely common across the Tourette’s population. Autism co-occurs at significantly elevated rates. Learning differences, including dyslexia and dyspraxia, appear more frequently than in the general population. And then there are the rage attacks, that is, episodes of intense, explosive anger that are disproportionate to their trigger, difficult to control, and deeply distressing for the individual and everyone around them.
These are not tantrums. They are not evidence of poor character or bad parenting. They appear to be rooted in the same neurological dysregulation that underlies the tics, and they are reported by a significant proportion of people with Tourette’s and their families. They are also almost entirely absent from public discourse on the condition, which means families encountering them for the first time are doing so completely unprepared.
Consider what that constellation actually looks like in a person’s daily life. A child managing tics while simultaneously navigating the attention dysregulation of ADHD, the intrusive thoughts and compulsions of OCD, and the chronic physical tension of anxiety. Each of those things is significant on its own. Together, they create a daily experience of extraordinary complexity and effort.
The mental health toll.
The mental health impact of living with Tourette’s is significant, underreported, and frequently misattributed. We’ve talked about anxiety briefly already, and depression and suicide rates are, sadly, higher in this population. And underpinning much of it is the chronic, grinding toll of navigating a world that doesn’t understand you.
Anxiety in Tourette’s is both a co-occurring condition in its own right and a consequence of the Tourette’s experience. The anticipatory anxiety of not knowing when the next tic will happen, whether it will be noticed, how someone will react — this is not a background hum. For many people with Tourette’s, it is a constant companion in every social situation, every new environment, every interaction with someone who doesn’t yet know them. It shapes decisions about where to go, what to do, who to tell, and how much of oneself to risk revealing. Over time, that level of vigilance is exhausting in ways that are hard to communicate to someone who has never lived it.
Depression, particularly in adolescence, is closely connected to the social consequences of Tourette’s. The bullying, the exclusion, the sense of being fundamentally different in ways that are visible and uncontrollable. Adolescence is already the period in which difference feels most costly and belonging feels most urgent. For a teenager managing visible tics, the cognitive and emotional load of that period is huge.
None of this is inevitable. With understanding, acceptance, and the right support, the mental health consequences of Tourette’s can be significantly reduced. But that support can only begin if people understand what Tourette’s actually is.
So what should you do if you meet or know someone with tics?
It’s pretty simple, really:
Don’t comment on their tics (unless, of course, they invite you to).
With tics, the impulse to comment, however well-intentioned, is almost always counterproductive. Drawing attention to a tic increases self-consciousness, and increased self-consciousness almost invariably increases tic frequency. The most supportive response, in most situations, is to continue the conversation as if nothing had happened. Because, intentionally, nothing has. It is only socially that the tic carries weight, and the person with Tourette’s is already carrying more than enough of that weight without your response adding to it.
Don’t ask them to stop.
This needs saying plainly, because it happens constantly. In classrooms, in family homes, in offices. Asking someone with Tourette’s to stop ticcing is the equivalent of asking someone with a broken leg to stop limping. It is not a reasonable request, however reasonably it is made. It communicates, whatever the intention behind it, that the person’s neurology is inconvenient and unwelcome. And the person on the receiving end of it has almost certainly already tried, with more effort than you can imagine, to do exactly that.
Understand that tics will wax and wane (and resist attaching value judgments to either).
When someone’s tics are quiet, a well-meaning “you seem so much better!” can land as an implicit suggestion that the high-tic days represent a failure of them and their character. They don’t. They are part of the natural variability of the condition, and the person living with that variability is navigating it with considerably less stability than that comment assumes.
Be a safe space.
This is particularly important if you are their parent. Home should be the place where the tics don’t need to be explained, apologized for, or suppressed. Where the full, unedited version of who your child is gets to exist without commentary. The rebound effect means that a child who has held it together all day will often tic more intensely at home — and that is not a crisis. That is your child trusting you enough to put the mask down. Protect that trust as the precious thing it is.
Celebrate the amazing things their neurodivergence brings.
Many people with Tourette’s and co-occurring neurodivergence have remarkable creativity, an exceptional ability to hyperfocus, quick wit, and a fantastic sense of humor, a finely tuned empathy born from knowing what it feels like to be misunderstood, and resilience that has been forged through experiences most of their peers will never have to navigate. They are real qualities, present in real people, that deserve to be named and nurtured.
Last, but by no means least:
Believe them.
You do not need to fully understand the premonitory urge, or the cognitive cost of managing tics, or the anxiety of a new social environment, in order to believe someone when they tell you that today was hard and that it was not a choice. That belief, offered without qualification and without the need for proof, is worth more than you know.
