“It makes it difficult to make friends, especially in the teenage years because people are just so judgmental on what you look like and what you do.” – Quote from a teen interviewed by the Tourette Association of America
For most adolescents, surviving school doesn’t only mean going to class. School isn’t just where kids learn basic skills, it’s a complex, constantly-changing social environment which must be navigated. It’s the first taste of the struggle many people spend the rest of their lives engaging in: the struggle to fit in.
This is arduous enough for the average kid, already made awkward and self-conscious by the sometimes jarring changes their bodies and emotions go through as they mature. It’s even harder for a kid with Tourette syndrome.
Unlike a lot of other diseases, Tourette’s has symptoms which can’t be hidden. It’s a misunderstood disease – not all Tourette patients swear like sailors – and it’s often easy to dismiss someone who has the syndrome’s trademark tics as being weird or intentionally disruptive.
They aren’t. Tourette syndrome requires understanding and a degree of tolerance from those around the patient. Unfortunately, those qualities can be in short supply with adolescents.
Tourette … that’s the swearing disease, right?
Gilles de la Tourette was a French doctor who first documented the neurological condition in 1885, which bears his name. According to the National Institute of Health, NIH, Tourette syndrome generally appears in childhood with symptoms starting between the ages of three and nine. Males tend to develop the syndrome far more often than females, and the NIH estimates 200,000 Americans have the most severe form of the syndrome.
The syndrome’s often been depicted humorously on television and in movies. Yes, Tourette causes some of its patients swear loudly and randomly, which is unfortunately the extent of most people’s knowledge about the disorder. Although coprolalia – the involuntary use of foul language – is certainly a symptom of Tourette syndrome, only about 10 to 15 percent of people with the disease experience this symptom.
Tourette’s causes its patients to experience “tics,” which are repetitive, involuntary movements and vocalizations. Tics can be as simple as repetitive eye blinking, and as complex as a facial grimace accompanied by rapid shrugging. Some patients repetitively touch or sniff objects while others make involuntary sounds like sniffing, throat-clearing or saying random words and phrases. Tics often become worse during periods of excitement or anxiety.
For most patients, the tics improve by their late teen years and early adulthood – the NIH says only a minority of Tourette patients continue their symptoms past these early years. However, the early teen years are when the disease’s symptoms are the most severe. Worse, Tourette is often not the only problem its patients face.
Tics aren’t the only issue
According to a Centers for Disease Control and Prevention study conducted in 2011 and 2012, 86 percent of children diagnosed with Tourette had also been diagnosed with at least one other behavioral, developmental or mental health condition. 63 percent of the children were also diagnosed with Attention Deficit Hyperactivity Disorder. Anxiety problems were found in 49 percent of the children; 26 percent had been diagnosed with behavioral problems like oppositional defiant disorder or conduct disorder. Additional problems experienced by children with Tourette’s included speech and language problems, developmental delays, depression and learning disabilities.
It’s also a disease which affects parents: According to a study from the National Survey of Children’s Health, parents of a child with Tourette were more likely to report being angry with and bothered by their child.
All of this is in addition to a simple fact: Tourette syndrome marks its young victims as different. For kids who are just trying to fit in, Tourette syndrome is a cruel disease which can turn them into outcasts because they make strange noises and make unusual gestures. A study conducted by the Tourette Association of America of 96 youth with the syndrome reported many of them experienced a diminished quality of life, particularly those with more severe tics.
So what can parents do? It’s important to allow children to live their own lives and find their own identity, but Tourette is an isolating disease which causes many difficulties for kids trying to adjust.
Looking for solutions
The Tourette Association of America recommends parents be cognizant of stigmatization. Parents should talk to their kids about any difficulties and bullying they experience at school or in their community. Parents can also engage with educators, school employees and insurance companies to discuss the effects discrimination and stigmas can have on children.
The Tourette Association of America maintains a webpage offering resources and help to young people with the disorder.