Updated: Jun 22, 2021
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 as they now know why I’m making the noises I do,” says Cohen.
Cohen wrote a book, Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had (which is also a movie), about his experience growing up with Tourette Syndrome.
“I wrote my book to share my story in hopes that kids growing up today will have an easier life than I did growing up with TS. I also wrote my book for every educator, to remind them about the difference they make. To remind them if they just believe in a child and focus on their strengths then that child can grow up and follow their dreams despite the challenges they have in life,” says Cohen.
Some people living with tics will suppress them in public situations and then later in private their tics will begin again.
“For me, the best thing has been to give in to the less annoying and visible tics like shoulder checking. I am doing that now. The more annoying ones I had to actively fight my body to stop because it brought on too much attention growing up. It seems that I will always have some, but I would much rather have ones few notice than the attention-grabbing ones,” says Bill.
Types of Treatment
There isn’t a cure for Tourette Syndrome and since many people are undiagnosed, they may not be aware of treatment options or seek treatment.
Drawing attention to the tic usually only makes it worse so one form of treatment is to avoid calling attention to it.
Reducing stress is another way to lessen the tics since often stress causes the tics to increase.
“I think my tics are worse when I am stressed. I notice the tics more, and the tics happen more often when I am around others for long periods of time. I am an introvert, so I can handle large gatherings, but it can be tiring, and this makes it easier for the tics to happen,” says Bill.
Counseling has been an effective treatment for people with Tourette Syndrome to deal with the tics and dealing with how people react to their tics. A new type of therapy called Comprehensive Behavioral Intervention for Tics (CBIT) is a way to identify environmental factors that make their tics worse and also teaches skills to the person about how to create environments that are less stressful.
Boyle treats patients by using acupuncture to help release endogenous dopamine and serotonin which helps the patient feel a sense of relaxation and calmness. A recent research study found that acupuncture is an effective form of treatment for people with Tourette Syndrome.
“We are encouraged to report 80% of our patients with Tourette’s syndrome report a reduction in pain from tics, frequency and intensity of tics and anxiety with regular acupuncture care,” says Boyle.
What People Should Know About Living With Tics and Tourette Syndrome
There is a lot of misunderstandings or incorrect information about Tourette Syndrome which has resulted in people with this disorder experiencing punishment, ridicule, and prejudice.
When most people think of Tourette Syndrome they assume that means people yell out obscenities but only a minority of people with TS experience this symptom.
“We may look different and sound different, but we have the same dreams and aspirations as everyone else. If you take a moment and listen, you will see that people with TS are intelligent,” says Cohen.
Cheryl Maguire holds a Master of Counseling Psychology degree. She is married and is the mother of twins and a daughter. Her writing has been published in The New York Times, Parents Magazine, AARP. Upworthy, Chicken Soup for the Soul: Count Your Blessings, Grown and Flown, Your Teen Magazine, and many other publications. You can find her on Twitter @CherylMaguire05.