The diagnostic criteria for Tourette Disorder is so simple, so clear, so straightforward:
For a person to be diagnosed with TS, he or she must:
- have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
- have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
- have tics that begin before he or she is 18 years of age.
- have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).
So simple, so clear, so straightforward. So why is understanding the person with Tourette so complicated, so challenging, so confusing? In large part because although it is easy to explain what it “is” it is exceptionally difficult to explain what it feels like to live with it. Without that understanding, though, it would be incredibly difficult, if not impossible, for teachers and parents to effectively support children with TS. And this is why…
When you look at someone with TS, all you see or hear, are the tics. You don’t see the constant struggle, the constant commotion that is going on inside the person’s body. Although it might be easy to assume that when a person is not ticcing, they are okay or calm or not experiencing anything related to TS, more often than not, that assumption would be entirely incorrect.
What causes Tourette tics?
Although once thought to be an “involuntary disorder”, there is a fair amount of peer-reviewed research that indicates people with TS have “triggers”, both internal and external. However, the triggers are ever-changing and inconsistent over time and even moment to moment. The initial documentation of a TS tic “trigger” was made by Joseph Bliss in 1980 (footnote) in the first-ever layman’s article published in the Archives of General Psychiatry. His article describes how very slowly, over the years, he came to be aware of the faint signals that preceded a movement. He described the sudden leap from impulse to movement as ”the moments before a sneeze explodes … almost as uncontrollable as a twitching nerve,” and concluded that the movements are actually voluntary: ”the intention is to relieve a sensation, as surely as the movement to scratch an itch is to relieve the itch.” Although a controversial concept in its time, it is now believed that in fact, most people with TS have “premonitory urges” in which they feel a sensation and then respond to it with a tic, which eliminates the sensation, but only for a fleeting moment when the urge begins again.
What are examples of triggers?
What are some of these triggers? In addition to constantly changing, they vary person to person. Externally, they can be noises (loud noises but also softer noises like breathing and chewing), crowded places, certain people, unanticipated events, feeling as if someone is staring or talking about them, very cold weather, very hot weather, being physically over-stimulated, being physically under-stimulated, sitting for long (or even short) periods of time, being touched, certain foods, clothing, and smells, and so much more. Internally, it can be hunger, over-eating, being tired, not having a specific task on which to focus energy, illness, injury and over-sensitivity to internal sensory input, to name just a few. Although knowing what triggers a child’s tics can be helpful, for some children it is nearly impossible to figure out what they are, and some cannot be controlled regardless. Therefore, as a start, it is essential for parents and teachers to gain a solid understanding of what Tourette feels like to the person living with it: Joe Bliss’ concept of the Premonitory Urge.
What are Premonitory Urges?
Before a tic occurs, most people with TS feel a build-up of tension at a specific site within their bodies. Multiple “tension sites” can occur simultaneously. This “tension” has been described in multiple ways such as an itch, a tickle, a punch, a storm, fullness, an ache, tingling, burning, and a feeling that something is not “just right.” Once that feeling hits, the need to tic is extremely strong, analogous to holding in a sneeze or how it would feel if someone held their eyes wide and were told not to blink. Although some people can control tics for periods of time, most people feel that if they don’t tic when they get the urge, that they will “burst” or get that feeling like they want to jump out of their skin. Even when tics are suppressed, eventually they need to be let out, creating a “tic storm” that can be painful, embarrassing, and create missed learning and/or social opportunities.
What is an example of a child with Tourette Syndrome?
So, let’s think about this in the context of a school setting. Young Danny, aged 10, has Tourette. He was diagnosed at 5 and currently has no other diagnoses. However, over this past year, his parents are concerned about symptoms that look like anxiety and depression. They have also noticed that he is much more irritable when he gets home, than he has been in the past. He is a bright boy, with no learning disabilities but is not doing well in school.
Danny gets on the bus and sits with his friends. As they are talking, he feels an urge to lift his shoulders. It’s all he can think about and decides that a little shoulder movement isn’t going to cause attention to him so he does that tic and for a few moments he feels relief. Then, he feels pressure building up in his arms and knows that if he tics, there is a chance he will punch the seat in front of him so instead of succumbing to the feeling, he focuses on tightening his arms, hoping that the feeling will go away. And it does until he exits the bus, but for the rest of the bus ride, all Danny can think about is squeezing his muscles as the tension build-up is getting stronger and stronger. So much so that he has no available resources to talk to his friends.
As he exits the bus, he can no longer control the urge in his arms and is also aware of pressure building throughout his body. He stands still so he can fling out his arms, jerk back his head, and make a loud grunting noise. It only takes a couple of seconds and when he is re-composed, he is acutely aware of 2 girls standing near the school door, laughing and pointing. Danny feels a sinking feeling but is used to this, he ignores it, walks into the school, and starts to feel the premonitory urges build up once again. As he heads down the hallway he wonders if there will be a lot of kids by his locker. He knows that if there are, it could set off his tics again if they get too close or touch him. If he’s touched on his left shoulder, he needs to touch his right shoulder. The closed in feeling will increase his urge to tic. Just the thought of this, combined with not knowing what to expect, starts to make him feel nervous. As he is reaching his locker, he sees only 2 boys there and feels some relief, but then all of a sudden he is aware of building tension in his mouth and throat and before he knows it he lets out a shriek. The kids turn and he feels humiliated. But, he knows if he doesn’t hurry up he’ll be one of the last people in the classroom, and walking into a crowded classroom increases his urge to tic, so he ignores the stares and continues to his locker.
Once in the classroom, Danny is continually assessing the situation. It’s a constant effort of managing and mediating situations, both internal and external. “Do I tic now so I can alleviate the pressure because if I don’t it will be more embarrassing later on?”. “Should I go to the nurse and say I’m sick because I know that having to be in a quiet library will set off my tics?”. “Will my teacher make me work with the kids who were just making fun of me? If so, I know I’ll be nervous and my tics will increase. That will make the whole day bad and it’s only 9:00 a.m.” “If I go to the library I can try to hold in the tics but that’s not a good long-term strategy because then they’ll all come tumbling out in Social Studies. But maybe it’s worth it because the worst place to tic is in a quiet library.” All the while, Danny is trying to listen to the teacher, trying to suppress some tics, but still ticcing, and then trying to ignore the stares and murmurs. Now it’s 9:30 a.m. and he can’t wait to go home and take a hot bath because he knows his body is going to be in so much pain from ticcing and his brain is going to be so tired from trying to hold everything together. “And my mother wonders why I’m so crabby when I get home,” he thinks to himself.
What does the teacher see?
Let’s look for a moment at the same situation from the teacher’s perspective. She sees Danny walk into class seeming okay because he’s not ticcing. Of course she has no idea that already twice he’s been embarrassed by his tics, been laughed at, and that his arm and shoulder muscles are hurting from trying to contain the tic. She notices a few tics but since they are slight shoulder and hand tics and a couple of eye blinks she again assumes he’s doing okay. Then, as she is talking about the group project she notices that Danny doesn’t seem to be listening. She wonders why such a smart boy always seems to be daydreaming. She calls out his name and tells him to pay attention, which he does immediately. Then, as they are lining up for library she commends him and tells him she is proud of him for controlling his tics. “If only my teacher knew how much effort it takes, how stressed I am all the time thinking about it, and how tired and bad about myself I feel by the time I go home. If only she knew that when I say I have to go to the bathroom it’s really because I want to release my tics. If only she knew how much the comments and stares bother me. If only she knew that the reason I have trouble starting my work is because the pencil on my paper needs to feel “just right” or I’ll need to erase and start over again. If only she knew that the reason I stop working so much is because my socks don’t feel right and I have to adjust them until they do. If only she knew.
As seen above, TS causes a constant struggle between the mind and the body. Ticcing is no different than blinking or scratching an itch. No one WANTS to tic, yet the urge becomes so strong it is virtually impossible to block it. If the child controls the blinking, it might come out in squeaking. What’s better, what’s worse, when to do it? The mind of a Touretter is constantly navigating a body that is out of control. It’s annoying, discouraging and, at times, self-defeating. And, most bodies with Tourettes usually have additional disorders with which to contend. So, Danny’s scenario was really quite “tame” as compared to most kids with TS. The tics are just the tip of the iceberg. Add on ADHD, OCD, Depression, and/or Learning Disabilities and the “perfect storm” is created. Put that child into a class where the teacher, understandably, has a difficult time knowing how Danny feels, alongside kids who either make fun of him, are scared of him, get annoyed with him, or “put up” with him at the risk of losing other friends who think Danny is “weird.” Layer on top of that parents who are worried about their child, don’t feel like anyone else understands them, becomes alienated from friends and family, is frustrated by the notes home from school wondering why Danny can’t finish his homework (well, if he can’t finish it during the day he’s probably not going to be able to do it at home, either), frustrated with the lack of medical options, and feeling so guilty and so bad for their son who comes home every day with sore muscles, an exhausted mind, and feeling very beaten down.
- Illinois Tourette Resource Network This group provides 3 support group meetings a month, monthly family activities, adult activities, online support, and workshops. They also provide speakers, teacher in-services and peer in-services.
Bliss, J. “Sensory experiences of Gilles de la Tourette syndrome.” Archives of General Psychiatry 1980; 37: 1343-1347.
About the Author: Shari was the 3rd person in IL to be diagnosed with Tourette Syndrome (1976). Her parents co-founded the IL TS chapter along with several others, including Joe Bliss. In 1978, while at a board meeting in her parent’s home, Mr. Bliss told Shari about his theory of premonitory urges and provided some tips and tricks on how to control the tics. It was the first time Shari felt “understood” and attributes much of her success to Mr. Bliss and his strategies. She co-founded the Illinois Tourette Resource Network in 2014 and is honored that she can continue the legacy of providing TS support to the Illinois community.