What is Tourette syndrome?

Dear Reader,

It sounds like you’re referring to Tourette syndrome (TS). Named after the French neuropsychiatrist Dr. Georges Gilles de la Tourette, TS is a neurological condition that affects about 1 in 360 individuals between the ages of 6 and 17 in the United States. Individuals with TS typically experience repetitive, involuntary, or compulsive movements and vocalizations referred to as tics. What you are referring to specifically is the most widely recognized symptom, coprolalia, or the blurting of socially inappropriate or swear words. Though you may have heard of this particular tic more than others, it isn’t the most common and only occurs in ten to fifteen percent of people with TS.  

Tics associated with TS usually develop in childhood between the ages of three and nine, and are three to four times more common among boys than girls. They can range from mild to severe and the tics associated with TS are classified into two groups: simple and complex tics. Simple tics are sudden, brief, and repetitive; and only involve a few muscle groups. They usually manifest before complex tics. Examples include:

• Rapid eye blinking
• Shoulder shrugging
• Finger flexing
• Yelping or other vocalizations
• Sniffing, grunting, or throat-clearing
• Head jerking
• Neck stretching

Complex tics are more involved activity patterns that require the coordinated effort of several muscle groups. They can include:

• Jumping, hopping, bending, twisting, or kicking.
• Echolalia — repeating what other people say or do
• Coprolalia — using foul language, curses, or slurs
• Self-injurious behaviors (which are rare), such as lip and cheek biting, head banging, or hitting oneself

Tics are often difficult to control. Some people with TS are able to suppress tics for a short time (similar to holding back a cough or refraining from scratching an itch), but eventually tension mounts and the tic is expressed either involuntarily or by impulse. Stressful situations and life changes increase the frequency of tic expression, while states of relaxation or deep concentration may have the opposite effect. As individuals with TS reach adulthood, tics tend to decrease in frequency. Some teens and adults even experience complete remission of symptoms. About 10 to 15 percent of TS patients report experiencing disruptive tics into adulthood.  

The exact cause of TS is unknown, but it’s believed that it is a result of brain differences affecting particular brain regions, the connections between those regions, and the brain chemicals (neurotransmitters) that send along communications between those regions. Genetics seems to play a part as well — people with family members who have TS are more likely to be diagnosed with it. It’s also critical to mention that about 86 percent of those with TS have been diagnosed with at least one other co-occurring condition; the two most common being attention deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD).

Diagnosis of TS is usually quite complicated. In order for an individual to be diagnosed with TS, physical and vocal symptoms must be present (though not necessarily at the same time) for at least one year and start before 18 years of age. Tics can occur on a daily basis or can manifest themselves on and off over time. Ruling out whether the tics are associated with the use of medications or other medical conditions is also part of this process. Diagnosis is typically completed simply through discussion and observation, but in some more rare cases, laboratory tests, MRIs, and CT scans may be used to rule out the possibility of other conditions with similar symptoms. Getting a diagnosis is further complicated because many times, symptoms go unnoticed for significant periods of time; for example, parents may attribute rapid eye blinking to poor vision or frequent throat clearing to environmental allergies or seasonal colds.

The good news is that most people with TS have mild symptoms, are able to function well, and lead productive lives without medication. For those who have severe tics that are disruptive or dangerous, neuroleptic medicines and cognitive or behavioral therapies may be necessary to suppress tics; however, these medications are used only in severe situations due to their potential side effects. Treating any co-occurring conditions is often part of a comprehensive treatment plan as well. Currently, research is aimed at learning more about the causes of TS and to identify more effective therapies.

Incorrect diagnosis and public misunderstanding of the syndrome often cause people with TS to feel ashamed and socially isolated. The Tourette Association of America offers support and other resources for people with TS and their families.

All this to say, Tourette syndrome is a complex and frequently misunderstood condition. However, under the direction of a health care provider, a comprehensive treatment plan can be utilized to address symptoms and help those with TS achieve a high level of social and emotional adjustment.