Three Surprising Things About Tourette Syndrome—Do TV and Movie Dramas Get it Right?

Tourette syndrome is a genetic neurological condition that always manifests in childhood. It is caused by an imbalance in the brain of the neurotransmitters serotonin, dopamine and norepinephrine. That imbalance causes the brain to send signals to the body, including the vocal cords to move against the person’s will. Those involuntary movements and vocalizations are called “tics”. Tics are more common than people think. An estimated 60,000,000 people in the U.S. have had tics at some time during their lives, and one out of two people knows someone who has had them.
People with Tourette syndrome have both vocal and motor tics that wax, wane and change over time. The most common are eye blinking, coughing, throat clearing, sniffing and facial movements. Tics can be simple, single sounds or movements, or they can be complex, involving multiple noises, words or movements involving different parts of the body. There are often other symptoms as well, such as learning disabilities, OCD, ADHD, impaired fine motor skills and impulsivity. There is no known cure.
My realistic fantasy The House at 844 1/2, about a mother, and her son whom both have Tourette syndrome was inspired by my own life; my grown son and I both have Tourette. My symptoms started when I was six-years-old as soft, high-pitched squeaky noises that I felt the urge to make until I felt “just right”. No one else noticed them at first, and I passed as normal. When I was nine, I became obsessed with parallel lines. I looked pairs of parallel lines, and whenever I found them I had to knock the sides of my upward raised fists together twice. It was kind of like a game, except that I had to do it. When my friends and classmates noticed me doing that, they thought I was weird and made fun of me. That was when I realized that no one else had those “urges" but me.
When I was 11 I had the urge to knock my knees together. I knocked them together so much that large bruises appeared on the insides of my knees, and they hurt. It was when I rode on a bus during a class field trip that I realized the only way to stop the pain and the bruises was to stop the knee knocking. With nothing else to distract myself, I forced myself to stop, and the urge to give in was overwhelming. I succeeded at not giving in, but it was one of the hardest things I ever did.
It was when I was twelve that my tics really exploded. Whole body jerks overcame me so that heads turned as I sat at my desk at school. Adolescence is usually the worst time for a kid with Tourette, and I had it bad. No one, including my parents, knew what I had and so I endured years of bullying and rejection. It was especially painful when the mother of one of my best friends got her daughter reject me because of my strange “habits”, and I struggled with learning disabilities. Mercifully, by my mid teens my tics calmed down, and I was able to make new friends.
I first learned about Tourette syndrome while watching an episode of LA Law. One of the lawyers had a client with Tourette whose main symptom was coprolalia, otherwise known as the “swearing tic”. That character was exactly like me, the main difference being that the only time I swore a lot was when I felt angry or frustrated. Therefore, I thought that I did not have Tourette. Many other media also portrayed Tourette as being just coprolalia, which brings us to the first surprising fact about Tourette: Only 10% of people with Tourette have coprolalia. That’s right, just 10%.
The media sensationalize Tourette in movies and on TV by showing the most shocking cases, misleading the public into believing that all people with it have coprolalia or other extreme symptoms. That brings us to the second surprising fact: most people with Tourette just have mild cases. Those misconceptions lead to mislabeling and misunderstandings by parents, teachers and many other individuals in all walks of life. Since the disorder manifests during childhood, many children are blamed for their symptoms and punished because their parents or teachers believe that they can control them, when they cannot. Even parents who understand Tourette and how it affects their children struggle to convince teachers that their children are not being deliberately disruptive.
My son Dale’s tics started when he was two. I still had not figured out what we had, and I was mystified. During that time, I studied for my state board licensing examinations for my Marriage and Family Therapist license, and I kept coming across the diagnostic criteria for Tourette in the diagnostic manual, the DSM III. Whenever I read it, I panicked.

Diagnostic Criteria for 307.23 Tourette’s Disorder

“ . . . motor tics . . . vocal tics . . . causes . . . distress or impairment in social or . . . occupational functioning . . . clicks, grunts, yelps, barks, sniffs, snorts, and coughs . . . associated symptoms . . . distractibility . . . social discomfort, shame, self-consciousness . . . depressed mood . . . learning disorders . . .”

The description on the page sounded exactly like me, irrefutable proof in my mind that I was a raving, abnormal crazy freak. Horror washed through me like freezing ocean water. I didn’t want to have that bizarre, unattractive disorder. It couldn’t be true. I do not have this, I argued with myself. But every time I opened the DSM III to study, that diagnosis lurked within the pages, daring me to read it again. I avoided it at first, but the tension increased like a heavy weight pressing on my chest until I was drawn to the page with a strange, morbid fascination.
One day as I sat at my desk staring at that awful diagnosis, I felt my denial drain from me, in its place flowing a warm, peaceful sense of surrender. I could no longer deny the truth. I had Tourette syndrome, and so did Dale.
“Grunts, yelps and barks—ha ha!” my husband laughed one night while I studied as he read the diagnosis over my shoulder. He didn’t have a clue that I was the one he was laughing at. Oh God, I thought. I could never tell him. Although being able to name my and my son’s mysterious affliction was a relief, I felt like a gay person hiding in the closet, and I told no one. Just like that 11-year-old girl sitting on the bus resisting the urge to tic with ironclad determination, I suppressed my tics around others in desperation to be normal. I wasn’t always successful at it; even my husband wrote off my strange quirks as just part of my zany personality, and it became my deep, dark secret.
One night over dinner with my family, with my father, sister, husband and then five-year-old son, I disclosed to them my diagnosis. It took courage, and I felt relieved to have an explanation I could offer for my lifetime of weirdness. Their reaction was not what I expected.
“You’re just nervous,” said my sister. “Besides, you can’t diagnose yourself. That’s stupid.”
“We can’t be sure that’s really what you have,” said my husband.
My dad, never one with a high radar for sensitivity, looked annoyed. He admitted later, however that his sister had had symptoms like mine, as well as himself when he was a child.
Wanting to be taken seriously, I went to a neurologist to get a formal diagnosis. “I have Tourette syndrome,” I told him as I explained my symptoms. “I just need you to concur so my family will believe me.”
“There’s no other diagnosis it could possibly be,” he said with an amused smile. Scribbling “Tourette syndrome” on his letterhead, he handed it to me. “You can show that to your family, and I’ll make a plaque for them with those words on it, too.” We looked at each other and laughed. He also gave me a prescription for medication, but I never filled it, which brings us to the third surprising thing about Tourette syndrome.
The medications prescribed for tics (as well as anxiety, depression, ADHD, OCD and psychosis) often have side effects that are worse than the tics themselves. People with Tourette cannot just pop a magic pill and have all their symptoms disappear. Each case of Tourette is unique, so there is no one-size-fits-all solution; one medication may bring some relief to one person but wreak havoc with another. The medications prescribed for Tourette are often ineffective, and it can take years to find the right medication and dosage with minimal side effects. In the mean time, many people become obese, have decreased sex drive or sexual response and/or cognitive dulling that makes them feel like zombies. Other unpleasant side effects include blurred vision, nausea, constipation, diarrhea, sleepiness and tardive dyskinesia, the latter, which is permanent.
There is controversy in the Tourette syndrome community over whether or not to medicate. Some believe that all people with Tourette should take medication; others believe that there are natural alternatives to medications that in most cases are preferable to pharmaceuticals. As an adult with Tourette and the mother of a grown son with it, I am in the latter camp. All the adults I knew who had Tourette said they did not want medication. Adults who were medicated as kids said they would have preferred that their parents had accepted them the way they were rather than trying to force them to be “normal”. Most people agree, however that if tics are so severe that they cause a child bodily injury, medication may be the lesser evil.
The diagnosis of Tourette syndrome for a child can be devastating to a parent, and they may feel they owe it to their child to help them to be just like other kids. Many kids with tics are bullied, and so their parents want to protect them from being victimized. While it is understandable why parents medicate their kids for tics, many mistakenly believe that their children prefer enduring unpleasant side effects to having tics.
I find the following strategies crucial for managing and coping with Tourette syndrome. Even if you do not have Tourette or another tic condition, we all have something that we are embarrassed about, so you may still find some of those strategies helpful.
* Advocate for yourself by explaining your condition to others, if needed, in a casual, self-accepting way. I explain my Tourette to groups of parents at school events, to flight attendants on air planes, and to anyone I think might otherwise freak out, “I’m just letting you know that I have Tourette syndrome, so if you notice any unusual noises, movements or mannerisms about me, it might be my Tourette so please just ignore it.” Then I switch the subject so as not to make a bigger deal out of it than it needs to be. When I explain my Tourette to others with confidence, I am reassured by how supportive people usually are. Some say they had already figured it out; others say they never noticed my tics. People often ask why I am not swearing. One woman joked after a group meeting that I didn’t turn into a vampire.
* Habit-reversal therapy is where a trained therapist teaches a child to substitute a disruptive tic for a more socially acceptable one that still brings some relief. The child needs to be self-motivated, and many adults figure out how to redirect their tics on their own.
* Provide a safe place for you or your child to release tics, anger and frustration without judgment or censure. Some people with Tourette are easily angered, and if that is the case it is imperative that they have a safe place to release it.
* Join the Tourette Syndrome Association, find out if there is a local support group and attend meetings. Talk with the people there, and read everything you can about Tourette. Knowledge is power. If there is no group in your area, consider starting one. I find that groups that allow parents to bring their children are the most successful. The Tourette syndrome Association’s contact information is Tourette Syndrome Association, Inc., 4240 Bell Boulevard, Bayside, NY 11361-2820. 718-224-2999; Fax: 718-279-9596. www.tsa-usa.org, ts@tsa-usa.org.
* Develop a network of family and friends to call for support when feeling frustrated or overwhelmed.
* If your child has Tourette, educate yourself about it as much as you can, how it affects your child and what accommodations she or he needs in school. Be firm, assertive yet diplomatic with a teamwork approach to working with school staff.
* Do not let Tourette define you; develop confidence and build an identity instead based on your interests and character.
* Do what works best for you or your child and family, whether or not it is what works well for others.
* Having a condition like Tourette weeds out prejudiced people fast. Learn to accept yourself regardless of whether or not others do, and know that if someone does not accept you because of your Tourette, they are not worth knowing anyway. The flip side is that those who stand by you are the true compassionate souls we all need.
* Exercise. Nothing calms down my tics like a good vigorous workout. My favorite physical activity is bike riding.
* Meditate. Stress can trigger tics, and retreating to that quiet place within is a great way to relieve it.
* Seek out other alternatives to medication. A complete list with explanations is beyond the scope of this writing, but I offer a free list to anyone who purchases my book The House at 844 1/2. Just email me the receipt, mention USA Today magazine and I’ll email you a copy. See my website below for purchasing information.

Elizabeth Johnson Lee is a licensed Marriage and Family Therapist, award-winning writer and author of the critically acclaimed book The House at 844 1/2—a realistic fantasy about a mother and her son whom both have Tourette syndrome. In October 2003, the Bay Area Parent published her article Tourette syndrome: Bay Area Mother Helps Child to Succeed. She is a contributor to the Palo Alto Weekly newspaper and has spoken at Tourette Syndrome Association events. Elizabeth lives in Palo Alto, CA with her husband, two children and their hyperactive poodle.

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January 2015

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