Emauni Crawley, 23, a behavioral health coach with Tourette’s syndrome, has a severe type of tic that results in her saying things that are obscene or inappropriate.
“Your brain wants to say the worst things at the worst time in the worst places,” said Ms. Crawley, who lives in Durham, N.C. Like at work, where she recently called a co-worker a derogatory term.
The word suddenly “popped up in my head and I had to say it,” she said. “It’s kind of like a mosquito bite — you have to scratch it.”
At the same time, Ms. Crawley said she knew the pain that offensive words could cause, and why so many people were upset this week when a man with Tourette’s shouted a racist slur as two Black actors, Michael B. Jordan and Delroy Lindo, took the stage of a film awards ceremony. Ms. Crawley, who is Black, said that the fact that the slur was a tic does “not negate the fact that we still hurt.”
When a Tourette’s syndrome outburst includes offensive language, it can be jarring for everyone involved, raising questions about how to manage both the tics as well as the fallout that may result from them. These concerns took center stage on Sunday at the BAFTAs, Britain’s equivalent of the Oscars, when John Davidson, an audience member with Tourette’s, involuntarily shouted the slur as Mr. Jordan and Mr. Lindo presented an award.
Mr. Davidson, who was attending because a movie based on his life was in the running for several awards, later released a statement, saying that his tics were not intentional and that he chose to leave the ceremony early “as I was aware of the distress my tics were causing.”
The BBC was criticized for leaving the slur in its prerecorded broadcast and in the version posted to its streaming platform. It has since been edited out.
Tourette’s syndrome is a neurodevelopmental disorder tied to disruptions in the brain circuits that regulate movement and habit formation. The disorder starts in childhood and is characterized by involuntary movements and sounds called tics, like eye blinking, throat clearing and shouting.
Tics tend to “wax and wane,” said Dr. Joohi Jimenez-Shahed, the co-chair of the medical advisory board for the Tourette Association of America. Although these tics often ease as people move into adulthood, they can flare up in moments of stress, excitement, anxiety or fatigue.
In an analysis of 48 studies from around the world, researchers found that about 1 percent of children and adolescents have Tourette’s syndrome. That’s likely an underestimate since this condition tends to go underdiagnosed, said Dr. Carine Maurer, director of the TAA Center of Excellence for Tourette Syndrome and Tic Disorders at Stony Brook University, particularly in people with less obvious tics.
For example, Jhónelle Bean, 30, an American Sign Language interpreter who lives in San Antonio, Texas, has had Tourette’s since she was 8 years old but was only officially diagnosed in 2021.
Most cases of Tourette’s are mild, but about 10 percent of people with this condition experience coprolalia, a type of tic involving outbursts that are profane or socially inappropriate. “These are not phrases or words that are driven by particular beliefs,” Dr. Jimenez-Shahed said, adding, “it really is not how they feel.”
People living with Tourette’s often get what’s called a premonitory urge right before a tic — almost like the feeling right before a sneeze. “It’s very brief. For me, it’s usually less than a second,” Ms. Bean said. “You feel it, you tic.”
And much like a sneeze, trying to hold a tic back doesn’t necessarily work. “It’s like a volcano, so the more you suppress it, the more intense the blowup is going to be,” said Kevin Garramone, 48, a writer in Portland, Ore., who has lived with Tourette’s for 40 years.
While most people with Tourette’s syndrome “do extremely well,” managing their tics, sometimes different environments can create a curveball, said Dr. John Walkup, a psychiatrist at the Lurie Children’s Hospital in Chicago and an expert on Tourette’s syndrome.
Mr. Garramone, who also has coprolalia, finds that his symptoms often get worse in large social settings, so he tries to avoid malls and movie theaters. “I’ll say obscene things that will embarrass the most ambitious vulgar person,” Mr. Garramone said. Growing up, these involuntary tics led to beatings at school and to classmates being told to stay away because their parents called him a “bad influence,” he added.
Even though he tries not to dwell on other people’s reactions, Mr. Garramone said that he has isolated himself at times so that he doesn’t offend those around him.
But he understands why Mr. Davidson chose to attend the award ceremony, despite the possibility of an outburst in a pressure-filled environment. “You walk on this line that’s so razor thin, but you want to live. You want to experience life, but you don’t want to crash and burn,” Mr. Garramone said.
Isolating a person with Tourette’s syndrome or telling them that a specific place is off limits simply because of the potential for these flares would be unfair, some experts and people with Tourette’s said. “It’s such an honor to be up for an award on that high level. How could you walk away? You finally get an acknowledgment for who you are,” Mr. Garramone added.
Mr. Davidson talked to Variety about the incident and how he deliberated about whether to go to the ceremony. “After living with Tourette’s for almost 40 years, I was aware of how physically and mentally difficult it would be for me to attend,” he said, adding, “I put every ounce of energy and concentration into being able to attend.”
Although there is no cure for Tourette’s, treatment can help manage the tics. Doctors sometimes prescribe medications to dial down dopamine signaling in the brain. But because of the side effects, the gold standard treatment is behavioral therapy, where people are trained to recognize the urge right before a tic and swap in a different response.
“Instead of saying the swear word, they can be taught to say the first syllable or change that swear word into something that’s more socially acceptable,” said Dr. Barbara Coffey, chair of psychiatry and behavioral sciences at University of Miami Miller School of Medicine.
This is one way that Jumaane Williams, 49, who serves as an ombudsman for city government as the public advocate for New York City, has managed to control the vocal tics of Tourette’s syndrome. Mr. Williams, who is Black, has sometimes yelled out a racist slur because of his disorder.
Having tics “doesn’t have to limit what you do,” Mr. Williams said, but it’s necessary to have compassion for the other people around you. That might involve educating others about your tics, stepping away for a moment or acknowledging hurt feelings.
When Ms. Crawley involuntarily used an offensive word to refer to her co-worker, she quickly checked on him, and they talked about it.
“I know that you know that it was my tics, but still words have meaning,” she told him. “Are you OK?”
He reassured Ms. Crawley that there were no hurt feelings, she said, and thanked her for taking the time to ask.
Christina Caron is a Times reporter covering mental health.
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