I’m pretty open about the fact that I have Tourette’s Syndrome. In fact, I would go so far as to say I would be surprised if there was someone who knew me and wasn’t aware of it. However, one thing I’m not very open about is my own experiences with it. I believe awareness is important, I just haven’t been sure how to go about it. So, I will begin with the basics, including its history and functions. Part 2 will be about my personal experiences with the disorder.
Tourette Syndrome, also known as TS, Tourette’s Syndrome, and Gilles de la Tourette Syndrome, is a neurological disorder characterized by involuntary repetitive muscle movements and vocalizations known as tics. Individuals with TS have at least two motor tics and at least one vocal tic in some combination over the course of more than a year, with symptoms appearing before age twenty-one. The onset of Tourette’s is generally triggered by a stressful or traumatic event, anything from a child moving or switching schools to the loss of a loved one. Tics commonly begin appearing between the ages of five to seven, with an increase in frequency and severity between ages 8 and twelve. In most cases, an improvement in tics is apparent in late adolescence, with about half of individuals experiencing a remission or decrease in symptoms as they get older. Tics range from mild to moderate to severe. They wax and wane over time, and regularly change in type, frequency, and severity. Sometimes these changes occur for no apparent reason, and sometimes in response to specific factors such as anxiety, stress, fatigue, excitement, and illness.
Types of Tics
There are two types of tics:
Motor tics involve involuntary movements of the body. Examples of simple motor tics are eye blinking and squinting, facial contortions, jaw movements, head bobbing or jerking, shrugging, neck stretching, and arm jerking. Complex motor tics involve the involuntary movements of multiple muscle groups or combinations of movements which are generally slower and more purposeful in appearance, such as jumping and twirling. Rare complex motor tics are:
- Copropraxia: the making of obscene or offensive gestures. This is almost always at random and without context.*
- Echopraxia or Echokinesis: The repeating/mimicking of others’ movements.
- Coprographia: The writing of obscene words or phrases.
Vocal or phonic tics are involuntary sounds. Examples are throat clearing, hooting, barking sound, squeaking, shouting, sniffing, and coughing. Complex vocal tics are words/phrases that may be recognizable or not, but occur consistently out of context. Other complex vocal tics are:
- Coprolalia: A vulgar or offensive outburst. It can be muttered or shouted, almost always* out of context and sometimes spoken mid-sentence, or uttered for no apparent reason from silence. It’s not always vulgar, but it is offensive, such as the use of racist, sexist, homophobic, or religious slurs. Despite incessant depiction in the media, this only affects about 10% of those with Tourette’s.
- Echolalia: The repeating of other’s words, sounds, or phrases in an echoing or mocking fashion.
- Palilalia: The repeating of one’s own words or phrases.
There’s also another obscure type of tic called a mental tic. It’s an internal tic with no outward appearance, but consists of an obsessive thought and an urge to resolve that thought, such as countering an unpleasant idea with a mental routine, like counting to ten repeatedly until the urge passes. They often involve mathematics and fascination with symmetry.
Tics are often experienced as an uncomfortable sensation, usually in a certain body part, such a buildup of pressure or tension, compelling the person to perform the tic in order to relieve it. It’s as uncontrollable as a cough or sneeze; it can be suppressed, but it must eventually be performed. However, the longer one attempts to suppress it, the more severe the end result will be. Some people experience a feeling of impending doom, which cannot be alleviated without performing the tic. Still others feel like they’re being controlled by an outside or internal force that they’re fighting against for the control of their own body. In the past, tics were often attributed to demonic possession.
Some tics can be self-harming, such as if one has to perform a tic in which the individual has to hit themselves in the side with their fist, or hit their head against something. Sometimes, though rarely, this can be debilitating and a major health hazard, even causing internal damage. Again, self-harming tics of this severity are extremely unusual.
Another type of tic is described by Rick Fowler in his book Tourette Syndrome: Beyond the Unwelcome Companion: “A person may sense an imaginary object and reach out to feel or move it, much like a mime touching an invisible wall. Although this type of phantom fixation may appear to observers to be triggered by a series of hallucinations, it is not. This action is driven by a vague yet convincing awareness that the phantom object, in some form, is there.”
Lesser reported are “tic attacks.” They are episodes of sudden bouts of tics and/or tic-like movements that can be full-body and/or look like seizure convulsions. They can last anywhere from five to fifteen minutes to even an hour or more.
Fortunately, tics can be momentarily assuaged by engaging in activities that requires one’s full involvement and concentration. Many people with Tourette’s pursue careers in fine arts, sports, even at least one person with tics became a fighter pilot, possibly for this reason.
*I say almost always because I suppose sometimes it could seem to be within context. However, this would be a mere coincidence.
As you can imagine, many tics are socially unacceptable, causing rejection by one’s peers, and just by society as a whole. This can be difficult for those who experience this rejection, especially children, to cope with the embarrassment and exclusion. These individuals may suffer from feelings of low self-esteem, anger, guilt, and frustration, as well as the feeling of constantly being watched and judged. This can cause emotional trauma. Children are often bullied by uneducated kids, punished by uneducated parents, and/or removed from school settings by uneducated teachers. The latter two are more common among undiagnosed individuals, whose caretakers are unable to access the resources, or who simply refuse to acknowledge something is happening. Even into adulthood, one’s peers can often be cruel to those who are different. It’s harder for those with more moderate or severe tics to get jobs and start careers, especially those in business settings, which is why we often turn to the arts. Some people’s tics are so debilitating that they have to rely on someone else for their income, or have to apply for government assistance, which they may or may not qualify for. Many are too embarrassed to venture into public often, and are in the same boat.
Regardless of who you are and how mild your tics, this disorder can be humiliating, lead to traumatic experiences, and inhibit one socially. Opportunities are limited and dreams crushed, obstacles are a part of daily life. Tics, especially repetitive tics, are exhausting, and some people don’t understand this. But we must remember that none of this is the fault of the person afflicted. The responsibility of this unacceptance rests on the shoulders of an exclusionary society. As time passes, more information is spread, we have more doctors being educated on this matter, more advocacy groups rise, more acceptance being spread. Things are getting better, even if we do have obstacles to overcome.
Fowler, Rick. Tourette Syndrome: Beyond the Unwelcome Companion. Silver Run Publications, 2012.
“What is Tourette Syndrome?” Tourette Syndrome Association of Australia Inc. Eye Visuals Pty Ltd., 2014. Web. 02 Mar. 2017.
“What is Tourette.” Tourette Association of America. Tourette Association of America, n.d. Web. 2 Feb. 2017.
“Tourette Syndrome.” BrainFacts.org. Society for Neuroscience, 1 Apr. 2012. Web. 2 Jan. 2017.