Tourette ambassador presents to his peers
Philly.com
February 4, 2015

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Adam Fishbein talks with third graders on Tourette syndrome to reduce the stigma and increase awareness.

A strange thing happens when Adam Fishbein gets up in front of an audience to talk about Tourette syndrome: Nothing strange happens.

Though he has Tourette syndrome, he exhibits none of the tics - involuntary vocal sounds or movements - that accompany the neurological disorder. That, he said, is an indication of how passionate he is about getting his message out.

"When I am doing a presentation, I am focused on something I love," he said.

At age 16, the high school student from Elkins Park, Pennsylvania is a dedicated advocate for people with the disorder - and an official Youth Ambassador with the National Tourette Syndrome Association (U.S.).

He has taken his message of understanding and respect to a dozen audiences over the last year.

And, on an icy morning a few weeks ago, he brought it back to the beginning - to the place where he'd first grappled with the disorder, felt the pain of being bullied, and discovered the power of speaking up for himself.

In other words, he went back to elementary school.

Adam was 7 years old when he was diagnosed, the summer after a tough first-grade year at Wyncote Elementary. The low point came when he found himself under a desk, barking like a dog - and no one could explain why.

His peers reacted about as well as you'd expect.

"I didn't have any friends. It was horrible," he recalled.

Nine doctors were stumped, and so were teachers and counselors. One suggested to his mother, Rachel Ezekiel-Fishbein, that the problem was poor parenting, a lack of discipline.

But his diagnosis provided an explanation for his behavior - and instead of trying to hide it, Adam decided to share.

So, with a volunteer from the Pa. Tourette Syndrome Alliance, he gave a presentation to his own second-grade class, and then to every other grade level at Wyncote, explaining the disorder and how it affected his daily life.

"He had been in a situation where he'd been getting teased and bullied a little, and the opportunity for the kids to understand why he did the things he did changed everything," Ezekiel-Fishbein said.

Afterward, Adam said, "I was completely accepted by my class."

So, when he learned about the Youth Ambassador program about six years later, he immediately wanted to apply.

The program brings teens from across the country to Washington to learn how to educate others about the disorder and to lobby government officials for support.

"There are so many media portrayals of Tourette's that are just wrong. I wanted to make sure people knew what it really was," he said. For example, a common stereotype is that sufferers curse uncontrollably; in fact, only about one in 10 people with Tourette's does so. "I wanted to make a difference, and speak for those who wouldn't or couldn't speak for themselves."

There were a few such individuals in the audience at Wyncote, said Crystal Clark, the principal.

"We do have some students who are diagnosed with Tourette syndrome in this grade. The kids don't know who they are. But it's important for us all to be aware that even with the limitations, you can still be a successful and productive person. Adam is a testament to that," she said.

As he calmly set up his PowerPoint, Adam was interrupted by a stream of his former teachers stopping by to say hello. Then he turned to speak to dozens of wriggling third graders.

Adam's tics haven't totally gone away, and suppressing them is tricky: If you hold in a tic, it may come out only more forcefully later on. But he's a more self-assured public speaker than many others who don't have involuntary gestures or vocalizations to worry about.

Over the course of a half-hour, he delved into what it feels like to have Tourette syndrome.

A tic, he told the group, "takes a lot of energy to stop and most times you can't - like a sneeze." A tic could be as simple as blinking or as complicated as hugging strangers.

A hand shot up from the audience: "I hug a lot!" a boy said. "Sometimes, when I miss people, like in my family, if I miss them a lot, I hug them a lot."

Adam assured the boy that it was probably not a tic. Explaining an abstract concept to small children is complicated, so Adam tried to show them what Tourette's feels like: He asked them to write the Pledge of Allegiance - but cross out every third word and stop on command to tap their pencils on the floor.

"Don't worry - it's not contagious," he added.

But it is fairly common.

The Centers for Disease Control and Prevention reports that one in 360 children ages 6 to 17 has been diagnosed with Tourette's - named for French neurologist Georges Gilles de la Tourette, who first described the condition in 1885. Many more may be undiagnosed.

Anthony Rostain, Adam's doctor and a professor of psychiatry and pediatrics at the University of Pennsylvania's medical school, said one diagnostic challenge is that Tourette's often occurs alongside other issues, such as obsessive-compulsive or attention deficit hyperactivity disorders.

"A person with a Tourettic brain may present in different ways: negativism, resistance to change, or a need to do things in a particular way," he said.

There are many success stories, of people who outgrew tics or learned to manage them. Those include Tim Howard, goalie for the U.S. World Cup team; onetime Phillie Jim Eisenreich; and TV personality Marc Summers.

Still, "Many people with Tourette's have profound social anxiety," Rostain said. Depression related to social issues around Tourette's is not unusual.

That's why organizations have been looking to youth advocates to change the dynamic.

The concept was first developed in 2003 by Jennifer Zwilling, then a 12-year-old girl from Long Island with Tourette's.

"It was her dream that by the time that generation grew up . . . everyone would know what Tourette syndrome is, so there wouldn't be any more misunderstandings," said her mother, Jane Zwilling.

Jennifer and her siblings developed and refined her presentation, and she began bringing it to groups of students in the area. By 2008, the National Tourette Syndrome Association had adopted it, and began training other teens as ambassadors.

Adam, who attends Woodlynde School and is in the process of researching colleges, hopes to stay involved with the advocacy work as he gets older.

Now, the Pa. Tourette Syndrome Alliance also is building its own youth speaker bureaus. Most of the kids involved have Tourette's, but not all: One, a ninth-grade student, joined to make sure her little sister, who has Tourette's, isn't teased.

The Alliance's Sabrina Bosse said the impact of the presentations is often striking.

"That corny saying, 'knowledge is power,' never really resonated until I came into this position," she said. "People don't really understand what these kids are going through. Once they do understand it, there's so much empathy and compassion."

Like many other people with Tourette's, Adam had many challenges to overcome. So far, Rostain said, he has.

"He's a very outgoing guy," he said. "He's been able to take that social fearlessness and work with it."