When Malia R. was in eighth grade, a boy sitting near her in class suddenly fell on the floor and started jerking his head and arms. She stood to help him up, but he just laughed and said, “I have Tourette’s.”
The problem? Malia really does have Tourette’s syndrome (TS), and everybody in her class knew about the lack of body control that goes with it.
Fortunately, another girl stepped forward and confronted the jokester, and he ended up apologizing. But Malia, now 16, says she still remembers the sting of being ridiculed.
“That was my first experience with TS jokes,” the San Diego student recalls. “I will never forget that day.”
For teens with the illness, such occurrences are a parr of life. Even if other kids don’t poke fun, they often seem unsure of how to react to peers with the condition.
After all, Tourette’s syndrome is fairly unusual. Only about three teens in 1,000 have the disorder, which affects the nervous system, according to the Centers for Disease Control and Prevention. People with TS make movements and sounds they can’t control, called tics.
Typical tics include eye blinking, head jerking, shoulder shrugging, grimacing, sniffing, and tongue clicking, according to Judit Ungar, president of the national Tourette Syndrome Association. “This develops in early childhood and although not life threatening, it is life tormenting and can be the cause of bullying and prejudice,” she says.
In addition, TS often is associated with other conditions. It’s not uncommon for teens with Tourette’s also to have attention-deficit hyperactivity disorder, obsessive-compulsive disorder, or other disorders.
Unfortunately, tics may be mistaken for bad behavior. But the truth is that TS sufferers can’t stop the noises and movements that tend to draw attention from others.
“Holding back tics is sort of like holding back a sneeze,” explains Melissa Binstock, who has TS. “You can only do it so long.” Binstock is the author of Nourishment: Feeding My Starving Soul When My Mind and Body Betrayed Me, a memoir of her teen years spent learning to live with Tourette’s as well as several other disorders. Now 23, she is a college student majoring in psychology.
Here are a few myths associated with Tourette’s syndrome:
People with TS curse loudly and uncontrollably. That behavior, called coprolalia, does happen, but not frequently. Only about one in 20 people with TS experience that problem.
Children with TS will never do well in school or socially. TS is a physical disorder, not a mental one. Kids who have it can succeed both in the classroom and on the social scene.
People with Tourette’s will never be able to live normal lives. Life can be challenging for kids and adults with TS, but they can overcome the obstacles the disorder presents. “There are professional athletes, musicians, surgeons, authors, politicians, and actors who all have successful careers and also live with TS,” Ungar says.
Currently there is no cure for TS. It can’t be completely controlled with medication, although some medicines may help lessen symptoms. Visualization techniques and dietary changes may also be helpful.
Most people with TS have tried different approaches with varying degrees of success. Malia cut out bread from her diet and feels her symptoms have lessened. For Binstock, relaxation techniques have been helpful. Cognitive behavioral therapy has also shown success in making tics less severe. The therapy involves training patients to be more aware of tics and to do some type of competing behavior when they feel the tics coming on.
Life With Tourette’s
When Dylan P. was 4 years old, he was found to have TS. Now 14, the Olathe, Kan., student says he faces constant challenges.
“It has affected everything about my life,” Dylan says. “If I have a disruptive tic in school, I have to let my teacher and my class know so that I do not get in trouble and so they know to ignore it. If I have a side tic, my abs hurt after a while. If I want to learn to drive, it will affect my driving ability.”
Still, Dylan goes to school like other kids and looks forward to the future. He is an A student and plays on his high school football and baseball teams. Keeping as busy as he does means he has a lot of experience balancing things, both in school and out. Sometimes the balancing is literal: “I scare my morn to death when I juggle and ride my unicycle at the same time or use my pogo stick and jump rope at the same time,” he says.
Malia also leads an active life. Along with volunteer work helping advocate for people with TS, she participates in Girl Scouts and operates her own recycled jewelry business. After high school, she plans to study life sciences in college.
Malia and Dylan are busy doing what they can to make life better for people with TS, but teens with the disorder say it’s also a big help when others make an effort to understand their situations.
“Do not let our tics bother you,” Dylan says. “Try to ignore them. We do not want the tics either. If our tics bother you, please tell us, but don’t let them be a hindrance to our friendship.”
Dylan adds that his friends have learned to accept his condition, even if at first they weren’t sure how to react to his tics.
“Anyone can feel awkward sometimes in relating to friends who have the syndrome,” Dylan notes. “But the important point is simply to be considerate.”
The Brad Cohen Story
Brad Cohen may be the most famous person with Tourette’s syndrome (TS) in the country. After he wrote a book about his struggles to get into teaching, his story became the basis for a TV movie, Front of the Class.
Although his career goal was teaching, Cohen was told by many people that he could never succeed in that role. But he didn’t give up. He graduated from Bradley University in Peoria, Ill., with a degree in elementary education (and later received a master’s degree). Today Cohen is one of the lead teachers in his Georgia school district. He’s doing exactly what he set out to do.
Cohen says it’s important to give individuals with TS a chance. “People with Tourette syndrome have just as many talents as anyone else,” he says. “We just need the support and opportunities to show off our strengths.”
HOW TO HELP SOMEONE WITH TOURETTE’S SYNDROME
Check out these tips, based on advice from the Centers for Disease Control and Prevention, for helping friends or family members who have TS:
Learn about Tourette’s syndrome. Get information about TS, and learn about its treatment and management options.
Educate people around you. When people know more about TS, they are more understanding, helpful, and accommodating. So be sure to pass on information that you learn to others. Consider doing a school project to help others learn about the syndrome.
Get involved. See what kinds of plans your school has for helping kids with TS, and ask how students can get involved. Then, sign up!
Think About It
There are many situations in life that can make you feel uncomfortable or awkward. How can you apply the advice from the teens with TS to other situations in life?