When he was a student at Vickery Creek Middle School’s and a member of the school’s cross country team, Joseph Sexton noticed some repetitive behaviors, such as shrugging his shoulders or taking a deep breath, the latter of which was especially hard on him during races.
“I would be running cross country races and during the middle of it, I would be trying to run and focus on my breathing pattern and stuff, then it would get interrupted by me trying to take a deep breath,” Sexton said. “It didn’t work that well, and it would go on after I finished racing.”
Sexton said he “would always wind up in an ambulance” due to the condition and was eventually taken to an emergency room following one race, where he was diagnosed with asthma.
Soon after, Sexton said he noticed even more behaviors, which he believed to be a nervous twitch until a neurologist diagnosed the then-eighth-grader with Tourette syndrome, “a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics,” according to the National Institute of Health.
“Tourette isn’t completely uncontrollable. What’s uncontrollable is I get the urge to do it, I make the decision to release a tic… It’s uncomfortable. It’s like a bad itch,” he said. “If I’m in an environment where I don’t feel uncomfortable, then I’m going to do it, because why should I have to put myself in pain and hold it back when it’s all I can think about. Then when you hold your tics in longer, you tic worse.”
Since his diagnoses, Sexton, a West Forsyth High School graduate who is just weeks away starting his freshman year at Vanderbilt University, has owned his condition and was recently named to the inaugural Rising Leaders class for the Tourette Association of America.
“When you have a condition, it’s like, ‘I have to do something with it,’” Sexton said. “Like, you’re constantly wondering, ‘Why me?’ If you’re able to present your condition in a way that helps other people it’s not as much ‘why me,’ it’s like, ‘cool, I have the power to do something.’”
As a student at West, Sexton was a three-time captain for the cross country team, placed second in the county’s high school poetry slam and founded and served as president of the Condition Awareness Club, a group for students with a variety of conditions and disorders at West.
At the group’s meetings, speakers discussed disorders including cerebral palsy, deafness and deaf culture, Bipolar disorder and schizoaffective disorder, Sexton said.
“This was a club that at most had like 35 members, so it wasn’t huge, but it was enough to fill a classroom and have you share your experience with people that want to hear other people,” he said. “Some of them were at the point that they could share their story because they heard other people sharing their story and they felt more empowered.”
Part of that empowerment, Sexton said, was he and others learning to advocate for themselves, such as developing a 504 Plan, or plans for those with disabilities to be accommodated by schools.
“It’s not fair that I get the same amount of time as everyone else,” he said. “I can spend five minutes of my time ticing, so why should I not get five minutes reimbursed to me so I can finish my essay or something, so it was advocating like that.”
Sexton said the timing of his diagnoses just before starting high school “was a transition not only into high school but into a very public setting where I was going to be ticing for the first time,” and he wasn’t as comfortable at the time as he is now discussing his disorder.
“None of my teachers actually knew because I didn’t want to tell them about it because I didn’t want to attract attention to myself or be treated differently,” he said. “I’ve always been pretty academically successful, so I didn’t want anything to be inhibited or to change anything. I was fine with the track I was on.”
Still, there were hardships at school for Sexton, though not exactly from Tourette.
“When people talk about Tourette syndrome, they always talk about how for most people … the co-occurring conditions are worse than the tics,” Sexton said. “My OCD was bad to the point that I didn’t like the way things felt in my hand and I didn’t like putting pressure on things, like I didn’t like putting a pencil on paper and pushing down. I couldn’t go to school because my compulsion is I would just slam down and break the pencils and was breaking keyboards, and it just wasn’t sustainable.”
Sexton said his “school life was on hiatus” until he was able to get his OCD under control through medication.
In many cases, people may have only heard of Tourette syndrome in passing or made as a joke due to the fact that many with the condition have coprolalia, or involuntarily saying offensive or rude remarks.
Sexton said he and his family didn’t think he had Tourette at the time of his diagnosis because he “wasn’t swearing” but said only about 10 percent of those with syndrome did and that it’s a perception the Tourette Association of America currently is trying to change through a campaign called “TS is not a joke.”
“Their big thing is they want to stop making Tourette a punchline,” he said. “Sharon Osbourne a couple of months ago was like, ‘I must have Tourette’s. I’m swearing so much.’ It’s like, come on. Not only is that not representative of the whole Tourette community, it’s cruel because people with Tourette are dropping out of school, they’re not able to get jobs. It’s not something that you can joke around on a casual basis.”
As a rising leader in the association, Sexton said he hopes to speak with local students or groups about his condition and said he could be contacted at firstname.lastname@example.org.