Exploring Tourette’s through dance and diagnosis

Tourette’s syndrome is having its moment. This weekend the Philadelphia performance troupe Band of Artists will presents a modern dance based on the neurological disorder.

Tourette’s syndrome is having its moment.

This weekend the Philadelphia performance troupe Band of Artists will present a modern dance based on the neurological disorder. (More about Tourette’s syndrome and treatments below.)

Affecting about 1 in 100 people, the disorder causes them to twitch uncontrollably or to speak involuntarily. One of them is Sutie Madison, an artist who has spent most of her life hopping through disciplines, from music to painting to video and now choreography.

She has created “Intersection: Tourette’s Syndrome,” mining her own physical tics and twitches for inspiration. In it, she takes her dancers through the paces of an obsessive-compulsive mindset.

Dancer Theresa Westwood, who grew up in the discipline of ballet and is a professional modern dancer, has never been asked to move like this.

“We bang our heads up and down—my neck was so sore on the first day. I had to learn a different way to do that to get the quality, but it wasn’t snapping my neck back and pulling all my muscles,” Westwood said. “Some of them can really be painful.”

Tourette’s is popularly known as a disorder which causes people to spout random obscenities. That’s not what Sutie Madison does. She twitches her hands, jerks her head to the side, and sometimes makes a barking sound.

She gave her dancers DVDs of medical films that catalog the range of twitches associated with the disorder. Those with the condition can double over at the waist, blink their eyes, and clear their throat over and over. (See video below.)

Questions of control

It may seem odd that someone prone to twitches would pursue dance, an art form based on physical control. But Madison says the tics are not completely involuntary.

“There’s a fine line, being able to control it and not,” said Madison. “The urge is strong, so strong that I have to do it. But when I need to hold back, I technically can. So it’s very psychological.”

Madison’s brain is flooded with dopamine, a chemical usually associated with pleasant feelings, that also makes her unusually energetic. The tics and barks are her body’s way of releasing nervous anxiety. But she says creative work—such as dance—relieves her symptoms.

“When I’m doing art and focused on something, all that extra dopamine in my brain that needs to release itself through tics and twitches, it’s refocused,” said Madison. “And I don’t feel the need to do it anymore.”

Her rehearsals bear that out. When Madison works directly with her dancers, she does not twitch at all, but when she has to sit still and watch them go through their routines, the tics come out again.

The dance performance at the Community Education Center in Powelton Village is packaged with a musical performance by a composer with Tourette’s, a hip-hop dance troupe who compare Tourette’s syndrome twitches with break-dancing moves, and a presentation by neurologist James Cooke who will explain away some of the misperceptions about Tourette’s.

Facts about Tourette’s syndrome and treatment

To learn more about Tourette’s syndrome and its treatment, WHYY’s behavioral health reporter Maiken Scott spoke with Martin Franklin, associate professor of psychology and psychiatry, University of Pennsylvania School of Medicine.

Scott: What is Tourette’s syndrome?

Franklin: I think the best way to define it is the combination of chronic motor tics and vocal tics. These are unusual movements or vocalizations that are often precipitated by what is called a premonitory urge, almost like an itch. So if a person has a building of tension in a particular body area, for example a feeling in the side of their neck starting to build up tension, they feel uncomfortable and a quick movement will relieve some of that tension.

I think we all will acknowledge there is a neurobiological element involved, as well as clear data that implicates genetic information and specific areas of the brain are involved in Tourette’s syndrome. However, we also know that environmental factors can influence tics. The maintenance of tics and its urges has something to do with how you respond to that physical feeling. That is where the treatment piece comes in. To diagnose Tourette’s you need both vocal and motor tics.

Scott: When does Tourette’s syndrome typically start?

Franklin: It can start as young as 2 or 3, but the typical age of onset is around 6 or 7. Typically, children will start out with a simple tic, like an eye blink, and the tics often change over time. For instance they may become more complex, or moving from eye blinks to movement of the shoulder, movement of the hand, or foot tics.

Though some children will age out of their tics, those who don’t may continue to experience new tics. A lot of kids do age out of their tics, but we aren’t very good at predicting who will and who won’t.

Scott: What people typically talk about Tourette’s, usually swearing comes up. I’m sure you hear that all of the time.

Franklin: Yes. It is the most common misconception that in order to receive a diagnosis, you must have someone walking around swearing, screaming out obscenities, etc. When you look at the epidemiology from both the U.S. and other cultures, coprolalia, the swearing tic, its prevalence is about 10 percent amongst people with Tourette’s. Which is very uncommon.

To depict it in that manner is inaccurate; you end up missing the most common vocal tics, like throat clearing. Often certain tics get missed when people assume Tourette’s consists of swearing. For example, if you have a kid clearing his throat every 30 seconds in class, it may look like he is disruptive or has a really bad cold that never goes away, as opposed to a tic disorder. Because of that misconception, you may wind up missing kids who may have benefited from early interventions.

Scott: What does treatment look like for Tourette’s?

Franklin: I think the most common forms of treatment involve medication, usually atypical neuroleptics. More recently, there have been studies looking at behavior therapy for tics. The behavior therapy basically uses the building tension that precedes the tic as a warning signal.

The first step is to teach the child to become more aware, to spot their tics, and spot the signs that the tic is coming. Then you teach something we call the competing response. In the competing response, you teach the kid to do a physically incompatible behavior when they have the first sign of the urge.

I’ll give you an example. A kid who knows he has an arm-flailing tic, when he feels an urge or build up in the shoulder, he has to throw out his arm. He learns to become aware of when the shoulder tension is building; instead he clenches his fist, puts his arm down at his side, and pushes his upper arm against his body for one minute.

What this sequence allows is the urge to habituate; he gets used to it and the feeling dissipates to the point where he can tolerate the urge without giving into his tic. We call it “urge surfing.” Over time, the urge starts to come down, and after a minute you may ask them to come out of their competing response. Every time you give into that urge by utilizing tic behavior, you strengthen the cycle. So, we teach kids to engage in competing responses, just by practicing in the office, they get better at spotting their tics, and using their competing responses.

Scott: And finally, how common is Tourette’s?

Franklin: Your definition can influence who gets diagnosed and who doesn’t, of course. Anywhere from 0.5 percent to 1 percent of children probably have enough tics to warrant a diagnosis of a chronic tic disorder or Tourette’s syndrome. So it is more common than we believe.