It took Hallie Hoffman seven years to be diagnosed with Tourette syndrome. She first started showing symptoms at age six, the summer before first grade, when she went to visit a horse farm and started blinking constantly. She and her family wrote off this behavior as an allergic reaction to the horses.
Years went by. Doctors and family members ascribed her tics to habit, allergies, or a need for glasses. The adults in her life tossed around possible solutions, but it was eventually Hoffman herself who convinced her parents that it was Tourette, after a suggestion by a neighbor who was a physician.
Yet even after she became convinced that she had the disease, Hoffman continued to live in diagnosis limbo for another seven years because her parents were unsure. Eventually, she did get an official medical diagnosis.
Although the syndrome has been studied since the 19th century, Tourette remains largely misunderstood, difficult to diagnose, and mostly ignored by the media.
That changed this past summer when Tim Howard, the U.S. soccer team goalie and a New Jersey native, became one of the leading stars of the 2014 World Cup. Howard, who also plays for the English Premier League at Everton, U.K, was diagnosed with Tourette syndrome when he was in sixth grade. Howard has now become a spokesperson for people with the condition.
“I have the easiest job in the world when it comes to TS awareness,” said Howard. “The audience that I am in front of every Saturday at 3 o’clock is 40,000 locally and millions worldwide. I get to go be myself and play soccer, if I twitch here or tic there, it is caught on TV and then people read about it. Without even knowing it, in the course of 90 minutes, I am raising awareness. That is the fun part of the job for me.”
Howard went public with his Tourette diagnosis about 12 years ago, when he was on the starting lineup for the New York Metro Stars. He soon approached Faith Rice, who was developing a New Jersey Center for Tourette Syndrome and Associated Disorders, and she later asked him to lend his name to the Tim Howard Leadership Academy at Rutgers University.
The center itself has been operating for 10 years. Hoffman said the way it works with participants is particularly liberating and safe. “It’s rare when I can go to a place and not have to explain my tics. I don’t even have to hold them in,” she said.
The Academy is in its first year, and participants like Howard learn from their peers and mentors about resilience, self-empowerment, and self-leadership. The program functions like an in-depth seminar on the disorder, with specialists from the fields of psychology, social work, genealogy and others bringing the newest information and tools for living successfully with the disorder. It is an opportunity for those with the disease to learn from one another.
A recent weekend at the Academy was a cacophony of hoots and hollers, a collocation of twitches and itches and tics, but when the group came together, there was an overwhelming sense of community and camaraderie. Participants compared notes on tics they had in common and speakers were encouraged to continue despite tics and to laugh at themselves rather than become embarrassed.
“Laughing at yourself is an endearing and disarming quality, don’t apologize,” said Marissa Lenger, a coach, during a panel led by the coaches.
Everyone at the Academy is affected personally by the disorder; those who do not have a tic disorder have someone in their family diagnosed with Tourette, including the head of the camera crew.
The panel of eight coaches and one intern, all living with Tourette, convened on a Saturday afternoon. Each member spoke of his or her struggles with misunderstanding teachers and dates. But the initial somber tone was replaced by an overwhelming sense of pride and empowerment.
Steve Lindenbaum told his fellow participants “Having TS, I am able to see the world in a different light than what a regular person can. It hasn’t, for a while now, felt like a 10-foot wall that I have to climb over. I don’t really think about my TS, I just live my life as a normal person would. Obviously I tic and make noise, but it doesn’t bother me.”
Danielle Piachentile and fellow coach and intern Jordan Chervin explained their surprise when an icebreaker game titled “Cross the line” revealed that only half of the participants had ever wished they didn’t have their tics. Even those who would gladly rid themselves of the syndrome felt that they would be incomplete without having had Tourette.
“Even though it’s a struggle, it really is a part of who we are and I think that is the main thing to take out of the Academy. They seem to really be responding and they are very thoughtful young adults,” said Piachentile.
Dr. Jay Tischfield explained to participants that Tourette syndrome can be better understood as a spectrum disorder, like autism. Each individual has his or her own set of symptoms rather than falling neatly under a simple diagnosis. It takes observation and training for a doctor to make the right call so these individuals can start treatment.
Still, when compared with other mental disabilities like schizophrenia and autism, Tourette research remains underfunded and largely misunderstood. Usually, individuals have a set of about 10 different tics that evolve over time. For instance, an activity like sniffling during allergy season can morph into an uncontrollable tic.
Jacob Bairds, a participant in the program, traveled four hours from his home in New York state in order to be diagnosed, because his pediatrician disregarded his tics as a phase. After this dubious pronouncement, and the reluctance of his school to provide individualized treatment, a family friend who has two children with Tourette’s told Jacob he likely had the disorder and to seek a medical diagnosis.
“There is not a lot of knowledge out there and that’s why I was inspired to go through training and apply for this,” said Baird.