When I was in elementary school, I began repeatedly jerking my head, blinking, snorting and clearing my throat: involuntary movements that I later learned are called tics. Imagine magma bubbling in the Earth’s mantle; pressure builds until it’s so concentrated that a volcano erupts. That pressure was always followed by a tension-snapping release.

I didn’t understand this internal struggle. Ticcing in bed, unable to sleep, I wondered why I was doing it. I grew up in rural western New York, and though I had loving parents, they never took me to a doctor or neurologist to discuss the tics, which were a daily nuisance. One day, a teacher told me to stop disrupting her class. To my horror, she perfectly mimicked my head jerks, and every eye in that classroom turned to me.

Right then, I understood I was not “normal.” So I developed strategies to transfer my tics to less visible parts of my body — such as my feet and hands — and valiantly tried to suppress my urge to snort.

In 2017, when I was 43, I finally got the diagnosis I could’ve used as a kid: Tourette syndrome.

Tourette syndrome (TS) is a neurodevelopmental disorder identified by French neurologist Georges Gilles de la Tourette in 1885. It typically emerges in adolescence and is one of three main tic disorders, the others being persistent motor or vocal tic disorder and provisional tic disorder, according to the Centers for Disease Control and Prevention (CDC). 

What distinguishes TS from these other tic disorders, according to the National Institutes of Health (NIH), is that it involves “the presence of at least two motor tics and at least one vocal tic for a year or more.” 

These tics can range in severity from simple (blinking, throat clearing) to complex (hopping, touching objects). The CDC estimates that between 350,000 and 450,000 U.S. children and adults have Tourette syndrome, but this figure doesn’t capture TS’s true magnitude. Some research suggests that up to 1 percent of the global population may have TS. 

According to Katrina Hermetet, a pediatric psychologist and vice president of medical and scientific affairs at the Tourette Association of America (TAA), half of Americans with Tourette syndrome go undiagnosed, “and the majority of those people are adults to older adults.”

In popular culture, TS is frequently synonymous with coprolalia, where you shout obscenities in public. This leaves many aging adults with TS symptoms in the dark; if they don’t have coprolalia, they may not seek a potentially life-improving diagnosis.

An entire generation of older Americans, myself included, who deal with tics and other co-occurring conditions, has spent considerable energy hiding their symptoms, sometimes for decades. Few studies have explored the impact TS has had on us, but that’s beginning to change.

For more than 35 years, Stephen Barron, 69, has led a company that develops and manages real estate projects around the state of Illinois. He has also masked his tics, often uncomfortably, throughout his life.

It started when he was 8 or 9. “I didn’t know what it was,” Barron says, “so I thought something was wrong with me.” 

Growing up in an educated Jewish family in the Chicago suburb of Lincolnwood, Barron was used to visiting doctors. His mother took him to see the city’s top neurologist. But they didn’t discuss Tourette syndrome.

Instead, he was put on an anti-seizure drug, Dilantin (phenytoin), that did nothing for his tics and only increased his existing anxiety. Stress and anxiety exacerbate tics, and unbeknownst to his mother, he stopped taking the drug.

Years passed. Barron continued to mask his tics, earned a college degree and became a CPA. During audits, he would sit with CEOs and feel an intense pressure to tic, but he waited until he was alone to release it. As he became more successful, his confidence grew, and he found he controlled his tics better.

“I didn’t stop thinking about them,” Barron says. “But they were more manageable, and I took ownership of them.”

Still, the daily effort of masking his tics held him back from taking larger risks in his professional life.

In 1986, when Barron was 31, he learned about Jim Eisenreich, a baseball player whose battle with TS was in the news; he instantly recognized similarities in their stories. This discovery led to his own diagnosis, which gave him peace of mind. He wasn’t alone; he was part of a broader community.

Soon, Barron got involved in advocacy on the local level. Today he’s got a bigger platform, as chair of the board at the TAA. To manage his tics, he meditates and exercises daily.

You can’t write about TS without discussing its unruly siblings, the suite of comorbid disorders that form “the iceberg,” with obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), attention deficit disorder (ADD), and anxiety being the most commonly reported in the TAA’s 2022 Impact Survey. Per a 2015 paper in JAMA Psychiatry, nearly 86 percent of people with TS have co-occurring conditions. 

Tics, in other words, are what people see. Beneath the surface are a host of other issues that shape a person’s physical and mental health.

For adults 50-plus, this can have major ramifications on quality of life. Until now, much of the research done on TS has focused on children. Scientists are only beginning to explore TS in adults.

“We’re starting to capture an entire generation of people who were either undiagnosed, underdiagnosed or misdiagnosed,” says Hermetet, “and that has to do with ‘the iceberg’ and the way the diagnostic and clinical criteria have changed over the years.”

In 2000, the American Psychiatric Association (APA) published the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision with an updated entry on Tourette syndrome. “Prior to the changes in the DSM,” Hermetet points out, “coprolalia was considered a key symptom of TS, so those who did not receive the diagnosis from practitioners utilizing this criterion may have been missed.”

Since about only 1 in 10 patients with Tourette syndrome have coprolalia, a significant number of people may have gone without a diagnosis.

Tourette syndrome (along with its comorbidities) often runs in families, as Jeffrey Kramer discovered. The 80-year-old Emmy award-winning producer and actor, best known as Deputy Hendricks in the 1975 film Jaws, watched his young sons struggle with TS, only to realize he’d had the same struggle all his life. By then, Kramer was in his 40s.

As a boy growing up in Teaneck, New Jersey, and on Martha’s Vineyard, Kramer constantly stretched his neck back and forth, which he calls “turtling.” Family members would tell him to stop, but he couldn’t. As an actor, he would make noises on set that sounded “like a ruptured duck.” Embarrassed, he claimed he was warming up his voice.

“You learn how to cope,” Kramer says. “You learn how to hide your tics, you learn how to hold them in.”

Kramer’s co-occurring conditions are OCD and ADHD. Together with his TS, they’ve played a dominant role in his life. Sometimes he does things in eights: eight bites of food, eight chunks of a power bar. An executive at Fox at the time, Kramer started taking the prescription medication Adderall for his ADHD.

“I would take a pile of scripts,” he says, “and I would go home and couldn’t focus. But with Adderall, I could sit and I could read. It made a difference.”

It was Kramer’s love for his sons that drove his commitment to raising awareness about TS. Watching them get bullied in Little League or at school was painful. Now that he’s older, with less stress, he doesn’t feel the same tension in his body. His tics wax and wane more, but they’ve never gone away.

It’s not uncommon for tic frequency to change during puberty. Longitudinal studies have shown that about a third of patients essentially stopped ticcing at puberty, another third maintained “moderate” tics, and the remaining third had “severe and impairing” tics into adult life.

Jackie Nau, 57, a disability advocate who recently published a picture book called Click, Tic, Jerk, and Hop, was among the third group. She was a popular girl (class president and homecoming queen) in her rural Iowa town. Her tics began when she was 6, and back then they were relatively mild, she says. Riding the bus to school, Nau would repeatedly wave her right hand. While climbing a stairwell, she might stop, turn around and start all over again if something “didn’t feel right.”

Others would ask, “Why do you do that?” She didn’t know. Doctors told her parents she was seeking attention and could stop if she wanted, and that only made her feel ashamed. “I knew I was different,” she says. “I was the only one doing these things.” Nau was mostly able to suppress her tics at school.

Though boys are three times more likely than girls to have TS, according to the CDC,  Hermetet suggests it’s not because they’re genetically predisposed. Girls and women — including those 50-plus — are just as likely to have TS as their male counterparts. It has more to do with who gets diagnosed, Hermetet says.

Over the years, Nau has taken 34 medications to tame her symptoms, but her tics have been so severe at times that she’s been refused a drink because the bartender believed she was inebriated. And her head and neck tics have been so pronounced that surgery was required to repair her compressed spinal cord.

Still, she remains positive and frequently lectures on Tourette syndrome. A fitness instructor for more than 25 years, she finds relief from her tics in regular exercise.

Tourette syndrome affects individuals of all races and ethnicities, and yet minority communities tend to be conspicuously absent in the statistics, a fact noted by the authors of a 2023 study published in the journal Neurology. It’s a blind spot that researchers have begun to probe.

Vernell Jones, 59, grew up in suburban Maryland, the third of six sisters. In elementary school, she began to repeatedly clear her throat; she also exhibited many of the underlying “iceberg” conditions common to TS, garnering her the nickname “Crazy Horse.” She thought she had allergies.

Jones’ story reflects a deeper structural inequity in the American health care system: Who gets diagnosed — and when — often depends on who can pay for it.

“When we were kids, we got our shots and did our regular checkups. But we didn’t have the money to go to an allergist,” says Jones. Had she done so, her TS might have been diagnosed much sooner, once a doctor understood that her tics weren’t caused by allergies.

Jones’ tics include a high-pitched yip, foot stomping, arm throwing, and a neck twist. (Like Nau, Jones also required surgery as a result.) When she was a young mother of four in her early 30s, her vocal tics intensified.

As a woman, especially a Black woman, getting a diagnosis was an uphill climb. For months she was told she had hiccups. It wasn’t until she visited a Black woman doctor that Jones was finally diagnosed. And even with a diagnosis, she discovered there were very few resources for adults with TS.

Through the years, Jones has suffered her share of indignities thanks to her tics. When her son graduated from high school, the school offered her a soundproof booth so she wouldn’t disrupt the ceremony.

Jones wears many hats that keep her busy. She owns a business and is a TAA volunteer advocate for children. She has even written an unpublished memoir. Seeing a good therapist and being active are two of the ways Jones manages her Tourette’s.

***

Today, it’s common for children who exhibit symptoms of TS to be diagnosed and, therefore, treated young. For older adults who came of age before gains in TS research and awareness were made — like me and the others in this article — the road to diagnosis and acceptance was much longer.

You can live a normal life with TS, especially once you understand it’s a chronic condition. You adjust to accommodate it. If you’ve spent your entire life ticcing in secret, consider consulting your doctor. You might be part of a broader community.

K.E. Semmel is a writer and translator. He’s the author of the novel The Book of Losman and the Substack Bright Boy: A Tourette’s Life.

There is no cure for Tourette syndrome, but a variety of treatments can help people manage symptoms that interfere with everyday life.

Medications can help reduce severe tics and symptoms of related conditions such as ADHD or OCD. Some medications used in TS treatment include:

• Medications that block or balance dopamine, such as haloperidol (Haldol), pimozide (Orap) and aripiprazole (Abilify)​
• Botulinum toxin (Botox) injections, which can help relieve simple or vocal tics​
• ADHD medications​
• Central adrenergic inhibitors, typically used to treat high blood pressure, have been found to be moderately effective in reducing tics, according to the Tourette Association of America​
• Antidepressants​
• Anti-seizure medications​ ​

Other treatments can include:​

• Comprehensive Behavioral Intervention for Tics (CBIT), a type of behavior therapy that helps people manage tics​
• Psychotherapy​
• Deep brain stimulation (DBS)​ ​

— Sources: Centers for Disease Control and Prevention, Mayo Clinic, Tourette Association of America

A 2024 report in the journal Pediatric Neurology found that Black and Hispanic American children were less likely to receive a Tourette’s diagnosis compared with white non-Hispanic children, aligning with older data from the CDC. However, that doesn’t mean the disorder is necessarily less common in those populations.

Some reports show the prevalence of the syndrome is about the same in different racial and ethnic groups. But other data indicate that the prevalence may be higher in children who are not white.

There isn’t much Tourette syndrome research that adequately represents minorities and underserved populations, which makes it difficult to pinpoint causes of disparities in general, researchers say. Some reports don’t note race and ethnicity at all, adds Dr. Kevin J. Black, a movement-disorders neuropsychiatrist at Washington University in St. Louis.

The Tourette Association of America says that Black Americans are underrepresented in general due to structural inequalities in the health care system, implicit bias from health care providers, and a lack of education and awareness in communities that serve the population. Black says there are likely other factors at play, including who seeks care for symptoms.  

“It turns out there’s a big difference between who comes to the doctor and who has tics,” Black says.

He adds that, due to the conflicting and scarce information currently available, we need more research that takes into account racial and ethnic data. That data could help clinicians intervene earlier, which may improve the quality of life for people with Tourette syndrome — and perhaps potentially prevent the syndrome in adults.

For Daniel P. Jones, a postdoctoral research associate at the University of Sheffield who has studied disparities among those with the syndrome, the biggest discrepancy he sees is that not all people with the syndrome get the care that’s right for them. 

“There is a lot of particularly stigmatized attitudes towards Tourette syndrome across the globe,” and this has “a negative impact on health care approaches in different countries,” Jones says. “There is very minimal work that has been done [to ease disparities], and we’ve got a long way to go.”

— Kristen Fischer