Tidying up the misconceptions
Teen shares her story to help others with Tourette syndrome
She sings, she dances, she’s a future scientist. But before she launches into her adult career, 16year-old Andreana “Andie” Hardin already has a mission to raise the public’s awareness of Tourette syndrome.
The Pittsburgh Allderdice junior was diagnosed at age 4 with the condition, which affects the brain and nerves and causes people to make repeated movements and sounds — called motor and vocal tics — that they cannot control.
“I was lifting my head and straining my neck,” Andie said, describing her first symptoms. Her mother, Kim Hardin, thought it might be a tic and took her daughter to the doctor. Like her grandfather, she was diagnosed with Tourette, which means there are both vocal and motor tics that have lasted for at least a year.
There are treatment options, but the neurodevelopmental disorder is a lifelong condition, usually showing up in early childhood or adolescence. According to the Tourette Association of America, it’s estimated that 1 out of every 160 children between the ages of 5-17 in the U.S. has Tourette. Some tic disorders may go away, while others persist into adulthood.
It was around second grade, Andie said, that friends said they noticed she was different.
“I started jumping. Some girls pointed it out. Some girls made it their mission to make it an issue.”
In third grade she was experiencing other conditions that often accompany Tourette’s: obsessivecompulsive disorder, attention deficit/hyperactivity disorder and anxiety. At one point she had to leave school for a few weeks to work on the OCD.
“School was different for me,” she recalled. She needed extended time to take tests, for example. But she still didn’t understand why.
The family of six moved to Squirrel Hill from Detroit when Andie was in the fifth grade. By then, her symptoms progressed from the head actions and jumping to rolling her tongue and making noises and vocal tics.
“My tics mellowed out about sixth grade,” she said, but things got worse in high school — not the usual progression for Tourette.
“By the end of ninth grade, I was embarrassed to go out.” She wore sunglasses to hide her tic of squinting.
“With stress at finals,” she said, “my tics were constant.”
Things changed for her, she said, after her sophomore year, when she signed up to be Youth Ambassador for the Tourette Association of America.
“I desperately wanted to do something,” she said. She went to the summer training, held in San Antonio, Texas, and later accompanied other ambassadors on a trip to Capitol Hill in Washington, D.C. She now speaks to young people at schools and other places about Tourette. She and her mother, who speaks to teachers and parents, are a team.
“I’m using my experience to help others and clearing up misconceptions,” she said, explaining that most people do not blurt out obscenities or curse words as Tourette is often portrayed on television.
Tourette Association CEO Amanda Talty said there are two trainings each year for Youth Ambassadors, who usually apply through a local TAA chapter but not always. Each young person, ages 12-17, also needs a responsible adult to be part of his or her team. Over the past 12 years, more than 450 teens have been trained as advocates.
How it emerges
Parents might not notice the tics at first, according to neurologist Robyn Filipink, director of the movement disorders clinic and the Tourette syndrome clinic at UPMC Children’s Hospital of Pittsburgh.
“It usually starts at 4 to 7 years of age,” she said. Parents sometimes think there’s a problem with throat clearing, asthma or dry eyes, she said.
The cause isn’t known, but tic disorders do run in families, and environmental factors are believed to play a part. “What we don’t know is how many kids have tics that don’t bother them,” Dr. Filipink said. For them, no treatment would be necessary.
People with Tourette often lead healthy, active lives, as Andie does. Treatment is available for associated conditions, such as ADHD, anxiety and OCD.
Stress from trying to hold back tics in public can make it worse, Dr. Filipink said.
“Stigma will absolutely influence, exacerbate it,” she said, adding that teaching families and the public about the condition is key.
Dr. Filipink said in the past five to 10 years, a new therapy to manage tics has been helpful, called comprehensive behavioral intervention for tics or CBIT.
“Kids with Tourette syndrome usually are pretty bright kids. If you bring in cognitive therapy, they love it. It can be helpful. They practice in therapy, and their parents help at home.”
“There’s nothing better to hear, ‘Oh my gosh, I feel in so much control,’” she said, adding that learning the method at about 10 years old is best.
In the therapy, when kids feel a premonition or urge that a tic is coming, they do a competing response — making a movement or vocalization instead. For example, if the tic is throat-clearing, a person could keep swallowing until the urge goes away.
Dr. Filipink said the best treatment is often a combination of therapy and medication.
“We don’t have a cure, other than time,” she said. “But parents don’t know we can reduce the frequency and severity of tics. … We try to figure out what is the most outstanding thing that is important to you or your family.”
Research and coping skills
For younger children, angry outbursts may be the most troubling thing, Dr. Filipink said. For that, behavioral therapy can help.
Treatment is reserved for those having negative experiences, according to neurologist Harvey Singer at Johns Hopkins Children’s Center in Baltimore.
“It’s kids picking on you, you’re not participating in activities, it’s disturbing the classroom,” he said.
Dr. Singer agreed that CBIT has
been shown to be helpful. However, he added, “The problem with that is there aren’t enough therapists. Some are doing home-based therapy, telemedicine, and we’ll see if things like that would be useful. … There are lots of treatment options. We’d like to avoid medicine if we could.”
Dr. Filipink said about 75 percent of youths with Tourette will outgrow their tics as teenagers; the remaining 25 percent will continue to have them as adults, but the tics are less severe.
Seeking answers to what leads children to get the disorder, current research includes looking for changes that turn genes “on” or “off,” Dr. Singer said.
“The feeling is this is indeed an epigenetic disorder, genes plus environmental factors, no one gene. They’re now looking at susceptibility genes,” he said.
Andie’s tics persist, and she continues therapy for OCD amid her busy life with a full schedule of school, field hockey, theater and friends.
Recently she performed in “The Boyfriend” at the Jewish Community Center in Squirrel Hill — a run of six shows.
Her friend Katie Slaymaker, 16, who goes to Winchester Thurston School, recalled when she first became friends with Andie in sixth grade, she noticed Andie was always saying, “I’m sorry.”
“Before I met Andie, the only things I knew about Tourette were the things I saw in the media,” such as cursing, Katie said. “That’s what I thought. I was misinformed, and Andie explained it to me.”
“Friends help,” Andie said. “Distractions are helpful. Katie has been one of the most helpful friends.”
There are other coping skills. “It’s a helpful thing to name your OCD,” Andie said. “I named mine Karen — the evil wife in ‘SpongeBob [SquarePants].’ I’m very open about it.”
She said her tics disappear when she’s performing. Others with Tourette have similar experiences, as the Centers for Disease Control and Prevention notes on its website: “They are often high achievers and find that their tics can become less severe or go away when they are concentrating on a task at hand.”
Andie’s an A student, too, although she said some might not understand why she needs accommodation to complete something like a test because of repetitive behavior.
Parents don’t need to shield their kids, Dr. Filipink said. “We don’t want them to stay away from stressful experiences. In academics, sports, there’s competitiveness. We want them to be in sports; we want them to be in activities.
“We really promote just keep doing the things you love, we’ll help you do what you love.”
To contact Andie or her mom: andreana.hardin@gmail.com or hardinkim99@gmail.com