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Good afternoon, my name is Susan Conners and I know Tourette Syndrome (TS) very well, as a person with the disorder, as an educator for 33 years who has taught and advised many children with TS, as a board member of the national Tourette Syndrome Association (TSA), and as chair of that organization's Education Committee. TSA is the only national voluntary nonprofit membership organization dedicated to serving persons with TS.
Tourette Syndrome is a neurobiological disorder characterized by involuntary motor and vocal tics. Typically it first appears between the ages of 7 and 11. TS is a very complicated neurological spectrum disorder. In a large percentage of cases it is accompanied by other neurological disorders, the most common of which are Obsessive-Compulsive Disorder, Attention Deficit Hyperactivity Disorder, and nonverbal Learning Disabilities. It is estimated that 200,000 people in this country have full-blown TS, and many more have related tic disorders.
It is easy for someone to understand how large motor tics can interfere with classroom performance. If someone's head were jerking from side to side or if someone's arm were flailing, the interference would be obvious. Some of the barely noticeable tics, however, can be the most interfering in a classroom setting. A very common facial tic is an eye blinking tic. As a seven-year-old, I was blinking my eyes so rapidly all day long that I actually broke vessels in my eyes. Try reading or writing while your eyes are constantly blinking. It is impossible. Yet this is a tic that few pay attention to because it does not disturb the classroom. I used to work with a child who had a finger crossing tic, again a quiet and unobtrusive tic. Writing was extremely difficult if not impossible. Taking notes became a most frustrating experience.
Similarly, Obsessive-Compulsive Disorder, which often appears with TS, can be terribly interfering, but it is rarely noticed by the classroom teacher. I once worked with a young girl who developed a counting obsession. She had to count every word in every sentence that she read or wrote, and then would record the number at the end of each sentence. You can imagine that once she developed this obsessive-compulsive trait, her grades plunged. Yet, because this was going on in her head, no one noticed. Despite their intentions to succeed, children with TS sometimes find tics and other TS symptoms interfering with learning. The good news is that working together, parents, teachers, and school administrators can find special education services and classroom accommodations that will produce optimal academic performance. IDEA can be an enormous help to children with TS. This help will be more effective and will reach more children with TS if the following recommendations are implemented in the course of reauthorizing IDEA.
1.) We need TS listed as a disability under the IDEA, more specifically under the category of "Other Health Impaired". Children with TS very frequently receive no special educational services because of misunderstanding about the nature of their symptoms. Educators continue to erroneously see TS as a behavioral or conduct disorder which results in the inappropriate placement of these children. For example, in most cases children are placed into the emotionally disturbed category and in some cases into the behaviorally disturbed category. Both of these scenarios are extremely detrimental to meeting the educational needs of students with TS in the least restrictive environment. Tourette Syndrome is a neurobiological health impairment and should be recognized as such by IDEA.
2.) We support basing eligibility for services and accommodations on the presence of symptoms that interfere with school performance. We have long struggled with the attempt to obtain services for children with TS, because frequently these children can achieve at grade-level. But a child with TS, who has interfering symptoms such as constant erasing, rewriting, and tics that cause the student to lose his/her place on the page, may be performing well below his/her potential. Also the struggle to achieve at grade level without the appropriate assistance for his/her condition may be impairing his/her ability to integrate well into other aspects of school life. With appropriate classroom accommodations and/or special educational services the child with TS will be able to achieve at a much higher level. In many cases as it stands now, a child must first fail before qualifying for services.
3.) Discipline provisions in the law should be written so they do not require punishing children for the expression of TS symptoms. We acknowledge that any behavior that is harmful to others must be controlled and that students with TS are responsible for their behavior. However, tics, both vocal and motor, are very frequently misinterpreted as bad behavior or intentional classroom disturbances. Tics are not bad behavior. Tics are uncontrollable neurobiological events. Decisions by educators addressing behavioral issues need to be based on a correct understanding of how TS affects behaviors. There are environmental accommodations and other techniques that can be used to maintain appropriate behavior. For example, a simple modification that allows the child to take a short break out of the classroom during each class enables the child to release tics in private without embarrassment. Frustration does not build and behavior in general improves. This is a more positive outcome where everybody wins.
4.) In order to achieve the best academic and social results for children with TS early identification is paramount. The law should require and provide teacher training for all special and regular education teachers about TS and its accompanying neurobiological disorders. Thank you for allowing me the opportunity to speak to you today. Under IDEA, there have been great strides made to help children with disabilities receive a free, appropriate, public education, but more is needed to be done. Only if everyone works together to improve IDEA can we be confident that no child will be left behind.
***As a member of the Consortium for Citizens with Disabilities, TSA fully supports their Principals for the Individuals with Disabilities Education Act.
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999