Updated: Jun 22
By Cheryl Maguire
“I feel like I have to flick my wrist all the time.”
This was the first sign that Melissa’s 11-year-old daughter had developed a tic but she didn’t know it yet. She told her daughter to try to think of something else. Then her daughter said she felt like she had to move her neck forward. Her daughter did this motion so frequently that her neck hurt. At this point, Melissa took her daughter to see her pediatrician who was able to help diagnose people living with tics.
Tics are involuntary muscle movements, like motor (movements like eye blinking and head jerking) or vocal (sounds like throat clearing and grunting). For a diagnosis of Tourette Syndrome (TS), they must exhibit multiple motor tics and vocal tics for one year. If a person only has one type of tic for under a year like Melissa’s daughter (who only had motor tics), then they meet the criteria for Provisional Tic Disorder.
“I feel like I have to flick my wrist all the time.”
Tourette Syndrome is a neurodevelopmental disorder that is a condition of the nervous system. According to the CDC, an estimated 1 out of every 162 children in the United States has Tourette Syndrome and about half of those children are undiagnosed. Often people with Tourette Syndrome have other diagnoses such as Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD).
Challenges People Living With Tics and Tourette Syndrome Encounter
Lack of Understanding
“The biggest challenge that I faced growing up with TS is the ignorance that exists for the medical condition. Many people don’t know what TS is or choose to not believe it when I try to explain it to them,” says Brad Cohen author of Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had.
A neurologist diagnosed Cohen with Tourette Syndrome when he was in 4th grade (age 10). He experiences a vocal tic that occurs several times per minute. Some people refer to his tic as a “barking sound” while others hear it as a “dra” or a “whah.” Cohen also experiences motor tics such as jerking his neck or arm while other times he blinks his eyes.
People Assume You Have a Behavioral Problem
“In school, TS comes across as a behavior problem. This is not the case as it is a neurological disorder. It is tough enough to live with the condition and then I also have to try to prove myself to others which is a challenge I have to deal with daily,” says Cohen.
Cohen discusses some of the difficulties he faced in school due to his disorder which led to him becoming a teacher and writing a book.
“People didn’t believe in me because I had TS. Teachers only saw the bad in me. They made me apologize for the noises I made. I was sent to time out daily and even got suspended. I wanted to be that teacher to see the good in kids. When nobody else can see it, I wanted to be that person. Because every child deserves a chance despite the disabilities and weaknesses they may have,” says Cohen.
Cohen also discusses that people who have TS often have other disorders like OCD, ADHD, sensory issues and anxiety.
“It is tough enough to manage the tics that occur because of TS, but when you add on these comorbid conditions it is that much tougher,” says Cohen.
Lack of Diagnosis
A lack of a diagnosis may result in people not receiving services or support for their behaviors. According to the National Institute of Neurological Disorders and Strokes (NINDS), it is common for people to never receive a Tourette Syndrome diagnosis since families and physicians are unfamiliar with TS or they may mistake their tics for other problems like vision issues or allergies. People self-diagnose themselves often.
Diagnosed with ADHD, Bill (age 42 and the owner of The Expat), experienced vocal and motor tics for the past 34 years, so he does meet the criteria for a Tourette Syndrome diagnosis. His vocal tics consists of high pitched and deep vocal noises while his motor tics are blinking, and repeatedly looking at one of his shoulders (shoulder checking).
“When I was made aware of Tourette Syndrome I only thought it was for people that shouted obscenities and couldn’t control it,” says Bill.
Pain and Muscle Spasms
People living with tics may develop muscle spasms and pain.
“I worked with an 11-year-old patient who experienced pain in his neck due to his head spasms and pain in his abdomen due to abdominal spasms. I provided acupuncture and moxibustion herbal treatment to relax the muscles and increase the circulation of blood,” says Kerry Boyle, a licensed acupuncturist at Integrative Acupuncture.
Boyle explains that in addition to the physical pain patients may also experience anxiety and depression symptoms due to their feelings of shame about their tics.
Ways They Overcome These Challenges
One way that Cohen overcame the challenges he experienced related to Tourette Syndrome was by talking about his disorder in an open and honest way from a young age.
“I learned about the power of education. When you educate others and tell them why you are so different, it’s a whole new world. The reason this happens is because now, they know. People must decide what they want to do with the information. Most people appreciate the information