U.S. Olympic goalie Tim Howard has Tourette syndrome. But he didn’t always embrace his role as a Tourette’s ambassador.
“When I was a 10-year-old, I tried to hide my tics,” he said. “That was my coping mechanism.”
According to the Centers for Disease Control and Prevention, Tourette syndrome is a “condition of the nervous system [that] causes people to have ‘tics.'” Tics are uncontrollable movements. They may be physical, such as squinting, or vocal, a sound that emits from the vocal cords like a shout or a grunt.
As Howard’s soccer fame grew, he saw an opportunity to put a face on the often misunderstood disorder.
“Starting in 1999, I was the backup goalkeeper in New York. And in 2001, I became the starter,” he said.
Howard says that new level of visibility was a turning point.
“At that moment, it was important that I got it out there, so that I didn’t hide it, so that I could be free. That was the start of raising awareness.”
“I have the easiest job in the world when it come to raising awareness. The audience I have every Sunday at 3 o’clock — in the stadium, it’s 40,000 people and, on television, it’s millions,” he said. “I get to go out there and just be myself. A tic here, a twitch there, it gets caught on TV and I’m able to raise awareness.”
‘Boosting my self-esteem was best medicine’
Howard is on the board of the the New Jersey Center for Tourette Syndrome, which partnered with Rutgers University to create the Tim Howard NJCTS Leadership Academy. He credits Executive Director Faith Rice with the idea for the academy, and has been lending his face to fundraising efforts since 2010.
Howard hopes that the workshops and the community offered by the academy will change misconceptions about the disorder that the teens themselves may have.
“Most kids that have Tourette syndrome and associated disorders [believe] myths that we’re trying to dispel,” said Howard. They have questions such as, “Can I drive? Can I go to college and get good grades?”
Rice says the program will pair teens with role models to boost their self-esteem. “The whole idea is that these kids need to view themselves, to be able to view themselves, as successful, capable, resilient people,” said Rice.
Building confidence is key, Howard said. “There’s a lot of challenges because this is a very visible, very in-your-face disorder. As a far as I was concerned, self-esteem, the boosting of my self-esteem, was the best medicine.”
The pilot year of the academy runs Aug. 1 though 3 at Rutgers University. Twenty-one teens from ages 14 to 17 will learn about the biology and behaviors associated with Tourette syndrome, as well as hear from “coaches,” successful adults with Tourette syndrome.
Next year, NJCTS hopes to expand to 40 students. Teens attend the Academy at no cost.
It’s estimated as many as one in 100 Americans have Tourette syndrome or an associated disorder.