Sande Shamash

TOURETTE SYNDROME - MORE THAN JUST A TIC DISORDER

Understanding TS to Advocate For Your Child

by Sande Shamash

 Tourette Syndrome (TS) is an extremely complex genetic neuro-behavioral disorder. Advocating for children with TS can be a difficult task. To be successful, it is important to have a solid understanding of the disorder as well as its impact on your child.

TS is primarily a tic disorder.   To be diagnosed, a person must have both vocal and motor tics occurring for over a year (can be intermittently), with an onset before the age of 18. In most cases, TS is formally diagnosed by a neurologist or psychiatrist.   Contrary to what is often portrayed on television and in movies, very few people with TS have coprolalia (the uncontrolled yelling of obscenities). Most motor tics are recognizable as tics: head shaking, twitching, shoulder shrugging, or eye rolling. Complex motor tics, however, can be difficult to distinguish from problem behaviors and are often interpreted as such, especially in a school, work or social setting. Examples might be tearing paper, poking, kissing, licking, jumping and obscene gestures. Vocal tics do not need to be actual word verbalizations and more often present as throat clearing, coughing, sniffling and humming. The physical aspect of this combination of tics can certainly interfere with your child's daily experience at school, but the social and emotional impact is often just as great, if not more profound. Feelings of social isolation, anxiety, rejection and a lack of self-esteem, combined with the constant fear of being punished by adults for uncontrollable actions is clearly not a productive or healthy way to get through a school day.

Although tics will wax and wane (appear and disappear) for various periods of time throughout the year, this unfortunately serves to reinforce the incorrect belief that people with TS can control their tics. While some students may be able to resist the urge to tic sometimes, this is only delaying the inevitable and the tics will still come out at some point. The effort and concentration it takes to resist ticing is extremely taxing and requires focus. This effort often interferes with the ability to concentrate on and follow school activities, whether listening to a teacher or working on a project. Because TS is a medical condition and the student cannot control the tics, the student should never be told not to tic. Later in this article, I will describe some APPROPRIATE ways to respond to or assist a student with tics, but reprimands or punishment are neither appropriate nor effective.  READ MORE