Tourette Syndrome

To download a pdf copy of the magazine click here: DOWNLOAD

When Dr. B. Duncan McKinlay looks back on his childhood, many of his memories are unhappy ones. His relationships with friends, fellow students, family members and teachers ranged, in his own words, from “abysmal to outright hostile.” His behaviour seemed out of control, and the more he tried to suppress his bizarre movements and vocal outbursts, the stronger the urges became. McKinlay was often accused of deliberately trying to get attention. The stage was set for anger, confusion and frustration.
When McKinlay was 18 years old, he read an Ann Landers column about Tourette Syndrome. It was a life-changing moment, as he realized that he was reading about himself. He was officially diagnosed a year later.

Tourette Syndrome (TS) is a neurological disorder that causes involuntary motor movements and vocalizations called tics. It is common for the type and severity of tics to fluctuate over time, and certain things can exacerbate or trigger them. One major trigger is stress, both “good” and “bad” stress.

Though people with TS can develop some control over their symptoms, the urge to tic is involuntary and impossible to ignore, somewhat like the urge to scratch a mosquito bite or to cough. Just as control in these situations can be exercised for a while, it merely postpones more pronounced outbursts later. Tic suppression is exhausting and distracting. Another feature of tics is that they often decrease naturally when the person with TS is concentrating on an absorbing task. This can be perplexing for family, friends and teachers.

Other associated disorders often accompany TS, and sometimes cause more problems than the tics themselves. It is now recognized that obsessive-compulsive symptoms may occur in up to two-thirds of people with TS. Attention Deficit Hyperactivity Disorder (ADHD), impulsive behaviour and difficulties with planning and organization are also quite common.

TS is now seen as a relatively widespread childhood-onset disorder, with symptoms first appearing at 7 years of age on average. Symptoms often reach their peak in early adolescence, and tend to decrease somewhat by early adulthood. Rates of prevalence have ranged widely over the years, but current research suggests an occurrence as high as 3% [i]. This means, of course, that every school will invariably encounter a student with TS.

Many students with TS overcome the significant challenges in their lives and go on to be successful, fulfilled, compassionate members of society. This is much more likely to happen if they have caring and supportive adults in their lives at crucial times in their development. Teachers have an important role to play. An attitude of acceptance and empathy towards a child with TS will help them build much needed self-esteem, and can also have a significant impact on how other students will choose to act.

Public awareness about Tourette Syndrome is the key. Some students with TS will have only mild symptoms, such as nose twitching or throat clearing, and the disorder will be hardly noticeable and perhaps undiagnosed. But the potential for misunderstandings and misinterpretation is considerable, due to the complex, more severe nature of tics that some children with TS experience. Imagine a student who blurts out inappropriate words with disturbing frequency, or who hops on one foot whenever he or she is standing in line. These tics look intentional—but they aren’t.

The Tourette Syndrome Foundation of Canada is an excellent resource for information and support. In addition, most major centres in Canada have a local Tourette Syndrome Chapter or Resource Unit, which will send trained volunteers out to schools, at no charge, to provide in-service training for teachers and staff.

A team approach is the most effective way to help a child with TS. Determine the specific areas of school life that are causing the biggest problems, and brainstorm with the student, his or her parents and other staff. Focus on finding solutions and teaching missing skills. You might be surprised at the creative suggestions the TS students come up with. Many become masters at trying to fit in with everyone else.

Here are some examples of other educational strategies for the TS student that are often helpful:

• Post assignments and schedules in the classroom, and make sure they are written in agendas or logbooks.
• Break down instructions into manageable parts.
• Allow for movement breaks (e.g., permitting trips to the washroom or water fountain, or sending them on errands as needed).
• Provide a refuge where the student may go to calm down or express tics.
• Establish a hand gesture as a reminder to refocus or to allow for a dignified exit.
• Ensure all support staff and teachers, including substitute teachers, are familiar with the student and his symptoms.
• Allow tests to be taken in a separate location, or given orally, with time limits waived.
• Consider shortening or modifying assignments.
• Allow and encourage use of computer for assignments and note-taking.
• Provide class notes and study notes wherever possible.

Dr. McKinlay, now a psychologist, is the Clinic Lead for “The Brake Shop,” a service for TS and Associated Disorders located in London, Ontario at the Child and Parent Resource Institute. He describes TS as a disinhibition disorder, in which the typical censors over stopping oneself (body movements, vocalizations, impulses, thoughts, etc.) are impaired. In other words, the brakes are leaky.
A popular speaker and presenter, McKinlay loves to share his insights with teachers and parents as to how best to support a student with TS. Here are some guiding principles that he likes to pass along.

Don’t try to distinguish the student from the disorder—it can’t be done. There is no “gremlin” named TS, unique from the child, which can be pointed at. Disinhibition disorders simply amplify, deregulate, and put on display all of the hidden thoughts, feelings, impulses, urges, and various other inner workings we all have inside of us.

Rather than asking “was it the student or the TS?” ask a much simpler (and ultimately more relevant) question: “is it ACCEPTABLE behaviour or not?” If it is acceptable (whether or not it is “normal”), then leave it alone. If it isn’t acceptable, then problem solving needs to take place (i.e., some accommodations or “detours” need to be established). The cause of the behaviour doesn’t really matter as much as finding a solution to it.

Rewards and punishments are designed to motivate people into modifying simple, learned behaviours. Leaky brakes are not a motivation problem, and they are neither simple nor learned behaviours. Hence, we can’t teach learning to manage your leaky brakes with reward and punishment, just as we don’t teach reading, writing or swimming by reward and punishment.

Visit the Tourette Syndrome Foundation of Canada’s website at www.tourette.ca and Dr. McKinlay’s website at www.lifesatwitch.com.

i Mason A Banerjee S, Eapen V, Zeitlin H, Robertson MM. The prevalence of Tourette Syndrome in a mainstream school population. Developmental Medicine and Child Neurology 1998; 40: 847-848.

Resource: Understanding Tourette Syndrome: A Handbook for Educators; published by the Tourette Syndrome Foundation of Canada; Toronto, Ont.; 2005.

Laura Locke is a freelance writer in Calgary, Alberta, and a former teacher and school administrator. She and her husband have three children. Their youngest son has Tourette Syndrome.