May 15 to June 15 is National Tourette Syndrome Awareness Month. It’s a time that advocates of Tourette Syndrome raise awareness about the neurological disorder that the Tourette Syndrome Association (TSA) calls “baffling.”
People with Tourette syndrome have involuntary movements and make involuntary sounds, referred to as motor and vocal tics. These tics, which can wax and wane, must be present for at least a year for a diagnosis to be given, and it’s most commonly diagnosed in early childhood or adolescence.
However, media portrayal of Tourette syndrome tends to sensationalize symptoms of TS that are actually pretty rare. For example, coprolalia, which is defined as the “involuntary utterance of obscenities, profanities, and derogatory remarks” is actually fairly uncommon, occurring in only about 10 percent of people diagnosed with Tourette syndrome. Yet the stereotype, perpetuated by such examples as Amy Poehler’s character in Deuce Bigalow: Male Gigolo, persists.
One parent of a child with Tourette syndrome had believed the stereotype herself before her own child was diagnosed.
“When my son was first diagnosed with Tourette’s, the first thing I said was, ‘But he doesn’t swear,’ ” Susan Breakie told the Huffington Post. Breakie is now the chapter leader for the Tourette Syndrome Association of Delaware, as well as the mother of a son with TS. “That’s the way I had stigmatized it because of things that I had seen in movies or TV shows.”
Another fact that may surprise some about Tourette syndrome is how common the disorder actually is in the population. According to the Center for Disease Control, about 1 in every 360 children between the ages of 6 and 17 has a diagnosis of Tourette syndrome. But one fact that people should remember is that a Tourette Syndrome diagnosis for one can look incredibly different than a Tourette Syndrome Diagnosis for another. Tics, both motor and vocal, can vary widely from one person to another.
“You may know one person with Tourette’s syndrome and then meet another one and he or she is completely different,” Michelle Guyton, a member of the Board of Directors for the Tourette Syndrome Association of Greater Washington, and the mother of a son with TS, said. “The best way for people to understand Tourette’s syndrome is to actually spend time with someone with Tourette’s syndrome.”
And Tourette syndrome is often much more complicated than tics. For example, 86 percent of people with TS are also diagnosed with another, co-occurring disorder. For children with TS, 63 percent of them also have attention-deficit / hyperactivity disorder (ADHD), 26 percent have behavioral or conduct problems, 49 percent deal with anxiety, 25 percent are suffering from depression, 35 percent of them are also on the autism spectrum, 47 percent deal with a learning disability, 29 percent struggle with speech or language problems, 28 percent are diagnosed with a developmental delay, and 12 percent have an intellectual disability.
In addition, more than a third of people diagnosed with Tourette Syndrome also have obsessive-compulsive disorder, or OCD.
And if you are going to spend some time with someone who has Tourette Syndrome, there are a few other facts you should know.
People with TS are not doing it for the attention — the tics are 100 percent involuntary and cannot be helped, any more than an allergy-sufferer could stop himself from sneezing. And it isn’t helpful to stop everything when the tics are occurring, or to point them out. In fact, as stress can often trigger or increase the severity of the tics, this can have the opposite effect.
And, as one parent points out, people with Tourette Syndrome are just like everyone else.
“Really, they’re just like other kids. My boys in particular like for people to ask them about it. They would rather educate people and tell them what’s going on than have people avoid them or make judgements about them without taking the time to know them. It’s about having an open dialogue and an understanding that these kids are wonderful, great, smart, talented little people that need to be included.”
And speaking of talented, click here to watch one young man with Tourette Syndrome wow the judges on the X Factor with his amazing singing.
Do you know anyone with Tourette Syndrome, or perhaps have it yourself? If so, feel free to share your experiences or add any facts in the comment section below. And be sure to raise awareness this month!