Educating Classmates About Tourette Syndrome

By Helene Walisever, PhD. and Sharon Hammer

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When families of children with TS or the children themselves are asked about the most difficult part of having Tourette Syndrome (TS), the most frequent answer is dealing with peers. Social interactions are potentially very challenging for children with TS. One of the most important things we can do for our children is to educate their peers about the disorder. This is admittedly not easy, but it is one of the most successful ways to reduce social problems.

Whether a child is in first grade or in high school, having peers who understand, tolerate, and accept the child’s differences can improve daily life at school and bolster self-esteem.

When a Peer Presentation Would be Helpful

A presentation should be considered when there has been a new diagnosis of TS or a significant tic exacerbation. Children may be asking the child “Why do you do that?” Teachers may be observing other children mimicking the child’s tics and want to proactively step in to prevent bullying.

Perhaps a child is transitioning to a new school building where there will be new and unfamiliar classmates or older students in upper grades. This is a big change from being with classmates who already know and accept him or her.

Perhaps a family is moving to a new neighborhood and the child will be in a different school altogether. A peer presentation may make it easier for the child to face the dual challenges of being both the new kid, and the kid with TS.

While this article focuses on peer education with classmates at school, don’t forget that peer education can happen at the child’s summer camp, after-school sports teams, religion classes, scout troops, clubs, or other activities.

But My Child Is Reluctant to Talk about TS with Peers

Many kids are initially reluctant to educate their peers about TS because they are concerned it will only highlight their differences. They worry that they will be put in the spotlight and will become even more self-conscious. This worry is legitimate, but in fact, the opposite often occurs; many children report that after a peer education program, they are less self-conscious. They become more comfortable because once their peers know they have TS and what it is, there is less explaining to do. Many children report that their tics actually decrease as a result, because they are less socially anxious.

Although a child may not want anyone to know about his or her TS and may be expending much energy to conceal and camouflage tics while at school, chances are classmates have already sensed that the child has some differences. A child, along with the rest of the class, may experience relief when TS is demystified through a peer presentation. Armed with information and insight, classmates often gain newfound respect for a child’s challenges. Some children have reported that once they share that they have TS and explain what it is, peers take the information in stride, and it has no negative impact on friendships.

In some instances, children with TS may have an exaggerated sense that others are constantly observing their tics. After a TS peer education program, such a child may be surprised and relieved to find that classmates had no idea that he or she is the one with TS!

The Child’s Role in Educating Peers

Peer education can take many forms, and a child’s level of participation may vary depending upon the child’s comfort level. Some children want to actively participate by going up to the front of the room and personally conducting the peer education program. Others may prefer to let a parent, teacher, or Tourette Association of America (TAA) Youth Ambassador (more about this below) take the lead but are willing to participate in a Q&A session. Still others may feel strongly that they do not want to be identified or participate in any way. It is important to respect a child’s desires.

Some presentations are directed to a child’s class or grade, but others can be done as part of a school-wide bullying prevention program or health fair. Some children are more comfortable with the latter approach because they do not want to be identified as having TS.

The TAA Youth Ambassador Program

Youth Ambassadors (YAs) are teens with TS or teens whose lives have been touched by TS. Formally trained in public speaking and in conducting peer-to-peer presentations in schools and community settings, YAs foster understanding, sensitivity and tolerance of TS and its symptoms. Their presentations dispel myths and stereotypes frequently associated with this often misunderstood and misdiagnosed disorder. By educating others, YAs ensure that their generation will grow up with a better understanding of TS – helping to make biases and bullying things of the past.

Coordinating A Peer Education Program

Begin by discussing the options for peer education and exploring what role, if any, the child would like to play in presenting information. It’s helpful when a family partners with the school to put the program in place. If a child’s classroom teacher seems approachable and receptive, then a discussion with the teacher is a good place to start. Alternatively, a parent may want to begin by approaching another member of the school’s professional staff, e.g., psychologist, social worker, guidance counselor or special educator. With such an individual on board, the next step will be obtaining the permission of the school administration.

Administrators tend to be more receptive if they are provided with specific information about the type of presentation that is being planned. Administrators appreciate it when the presentation does not disrupt the school’s schedule and the length fits within a typical classroom lesson or story time for younger children, or a class period for older students. The planning, presentation details and logistics may vary depending upon a child’s preferences and the age of the audience.

TS can be explained in a way that is developmentally appropriate for first graders. Once educated, classmates will likely be more understanding and accepting of a child’s symptoms and behaviors. It is often best to arrange for a presentation at the start of the school year, so that the class starts off on the right foot.

A classroom discussion of TS can take several forms. The child, with parent support and the assistance of the teacher, might choose to play an active role if comfortable doing so. The child and parent might prepare a script to explain the tics. Describe what tics are (not the bug!), that they are not contagious and that he or she can’t help ticcing, just like someone can’t help a sneeze. Talk about it being a medical problem, just like asthma or allergies. Let classmates know that the child does not tic on purpose for attention or to be annoying. See Appendix A for a sample script with first through third graders.

Alternatively, or in addition, the parent, the teacher or Youth Ambassador may want to read a short story about TS to the class. The feedback we receive from Youth Ambassadors is that children, including the child with TS, find this type of presentation “fun” and the child with TS feels “special” in a good and positive way.

Whatever form the presentation takes, ensure it is geared toward the ability level and attention span of the class. Prepare the child in advance for common questions classmates may ask about tics, such as: “Do tics hurt?,” “Do you take medicine for it?,” “Will it ever go away?” These questions may come up during the presentation or at some later point. Practice with the child giving some prepared responses, and devise a signal in case he or she needs help responding to a question at the presentation.

The transition to middle school is frequently a time when the family and children start to think about the need to educate a broader community of peers about TS. While a child may have been with a familiar cohort of classmates until now, the social sphere is now enlarging. In middle school students have half a dozen new teachers and meet dozens of new children. A child will have multiple classes with unfamiliar classmates, who may have limited opportunity to get to know the child well. It is important to plan ahead and strategize prior to the start of middle school, since the stress of this transition and the accompanying new academic and social demands may lead to an increase in tics for some children.

A parent, teacher or counselor may want to discuss the upcoming challenge of meeting new people, and brainstorm about strategies to ease that process. Explore with him or her approaches that have worked well in the past, including how the child has explained TS to current friends, and ways to duplicate these successes in a new school.

It may be helpful for a child to remain connected with any current supportive friends.  The reaction of new peers is less likely to be negative once TS is explained to them. The child, parent and a TAA Youth Ambassador may want to collaborate on a peer presentation. There is a wonderful scene in the TAA-HBO documentary I Have Tourette’s but Tourette’s Doesn’t Have Me, in which William is shown teaching his class about TS. You may want to view that scene together with your child to spark a discussion. 

However, at this stage in development the child may be more reluctant to talk about TS with peers than during elementary school years. Tweens in general are eager to fit in — not shine a spotlight on their differences. If this is the case, then consider having the school frame a Youth Ambassador Presentation as part of a larger school-wide or grade-wide health or anti-bullying initiative to educate all students about understanding and respecting differences.

Youth Ambassadors report back that middle schoolers tend to be receptive audiences. During Q&A, middle school peers express empathy and respect for students facing the challenges of TS and other differences. Middle school students with TS have shared that whether or not they actively participated in the presentation, they felt more comfortable in their own schools after Youth Ambassadors educated their classmates.

By high school, a teen should be honing self-advocacy skills. To do so, the teen needs to feel comfortable discussing symptoms with peers and teachers. Some teens may find it helpful to role-play ways to respond to peers’ (and teachers’) questions or comments about tics. If the teen can take a matter-of-fact attitude in explaining tics to peers, they will be more likely to say “whatever” and move on. Most adolescents are far more preoccupied with themselves than with others. It may be helpful to help the teen identify a counselor at school to approach if he or she encounters any social difficulties.

Some high school students may want to do a presentation about TS in a health class, psychology class, or similar forum. Some may be reluctant to be peer educators in their own high schools because they do not want to be identified as having TS, but they may be comfortable having other teens with TS present at their schools. Some others prefer to talk about TS with their peers one-on-one.

High School audiences are generally more sophisticated. Peer presenters will need to be more versed in scientific, sociological and psychological information and terminology.

7 Steps For Successful Peer Training

Great resources are available for discussing TS with peers, ranging from picture books for younger children, to PowerPoint presentations and videos for older students. The TAA website is a resource for locating such materials.

Regardless who gives the presentation or which materials are utilized, there are a few universal steps to ensuring a successful peer program:

Tap into understanding and empathy about those conditions before drawing a parallel to TS. A simple way to do this it to ask students to raise their hands if they have heard of asthma, then ask them what they know about it. Follow up by exploring their knowledge of some other common medical conditions. Then point out, depending upon the age of the audience, that it would be inappropriate to blame someone –and wrong to tease or bully someone – for having such a medical condition.

(e.g. trying to hold back a sneeze, an itch you can’t reach in the middle of your back that becomes intensely distracting, what happens if someone tries not to blink, having the hiccups, etc.). Point out that just like asthma, etc., TS is a medical condition, and no one’s fault. If the presenter has TS, welcome the audience members to make observations about you – notice the tics – explain what the tics are, why you do them, that you can’t help it, that you have done nothing to cause it. This can serve as the opening for providing more detailed information about TS, types of tics, diagnosis, treatment options, etc. The detail and complexity of information offered will vary depending upon the age of the audience.

Discuss the different types of traits people inherit from their family, that medical research is ongoing, and that TS is more prevalent in boys than girls. Discuss the fact that an individual with TS did nothing to cause it, that it is not contagious (high-five or shake hands with audience members) and that no one dies from it.

Depending upon age of audience, this can be as simple as trying not to blink for a set period of time, or as complex as writing, the Pledge of Allegiance (include a copy of the Pledge on a slide which participants can refer to) while contending with a set of assigned motor “tics” such as tapping their pencils three times whenever the presenter claps hands and crossing out and re-writing every third word all while the presenter is orally rattling off a detailed homework assignment that students are simultaneously instructed to remember. The goal of the exercise is to tap into empathy. After the simulation, provide time to debrief. Engage peers in a discussion about the challenges posed by the exercise. Encourage students to relate it to the challenges someone with TS faces every day, rather than something they experience for a minute or two. Depending upon the age of the audience, this exercise may also serve as a bridge to a limited discussion about ways to accommodate the challenges that TS may pose to a student during the school day and problem solving in terms of the ways peers and teachers may be of assistance to students with differences.

People with TS are teachers, doctors, lawyers, psychologists, business executives, chefs, actors, musicians, athletes, politicians, etc. Name some famous people with TS.

Do not be afraid to say you do not know the answer to a question.  Do not be surprised if audience members try to “diagnose” TS in themselves or others. Let them know that not everyone who experiences a tic at some time in his or her life has TS and that it is a medical diagnosis that can only be made by medical professionals.

One way to do this is by showing an age appropriate video (see Appendix B for resources and age recommendations and check the TAA website for additional materials).

Sample Script for Peer Education of 1st – 3rd Graders
by Julia Gottlieb, Youth Ambassador

DISCUSSION: I would like to talk to you today about differences in people. Can you tell me some things that are different about the students in your class? (eye color, hair color, wears glasses)

Now let’s talk about medical conditions.

  • Does anyone know anything about asthma?
  • What part of your body does asthma affect?
  • Have you ever seen anyone use an inhaler for an asthma attack?
  • Would you make fun of someone that you saw using an inhaler?
  • What would be bad about having asthma?
  • Does anyone know any disorders that affect the brain? (Head injury from accident, Cerebral palsy, someone can’t walk)
  • What does your brain control? (Speech, movement)
  • Does anyone know a brain disorder that affects movement?

Tourette Syndrome is a brain disorder that affects movement. With TS your brain is lacking stop signs. The average person only moves when he or she wants to move. When you have TS, your body moves when you don’t want it to. We call these movement tics.

INTERACTIVE EXERCISE: Ask kids to not blink for as long as they can. When they have to blink, they should raise their hand. When all hands are raised, ask the kids “How did it feel to not blink?” “Could you not blink forever?” Tell them that the uncomfortable feeling they had when they were trying not to blink is similar to the feeling a child with Tourette Syndrome has when he or she tries not to do a tic. Just like blinking, you can stop it for a short time, but eventually you need to blink. Some tics can be movements like eye blinking, or some can be vocal tics like clearing your throat. If kids who have TS cannot control their tics, is it nice to make fun of them? What should you do if you see someone else making fun of a kid with TS?

Matthew & His Tics –
A Story for Young Children

Written by E. Pearl