Tourette's syndrome: characteristics, causes, and treatment

Tourette's Syndrome: How It Affects Education

Imagine living in a body, explosive in nature, uncontrolled in behavior, and unpredictable in affect.

Now place that body in setting that requires concentration, interaction, and measured response - a classroom. Use your imagination again and pretend that you are a school district administrator.

You have just learned that three students with Tourette's syndrome are moving into one of your schools this fall. You are already facing budget cuts that threaten the integrity of the educational programming. How will you afford the special training that is required to accommodate your new students?

Alternatively, you are the mother of a child with TS. Your child is segregated from the other students because she spits and hums uncontrollably. Her self-esteem and frustration play out in jerks and tics. How will her future be secure without the present support of professional educators?

There are ramifications beyond the immediately obvious challenges presented by these scenarios. This review addresses aspects of the challenges posed by Tourette's syndrome and how it affects education. It elicits opinions from leading authority in the treatments of Tourette's as well as from the parents of children with this condition.

The first aspect under review is the condition itself and the questions one may have concerning it. What is Tourette's syndrome? Whom does it affect and how does the individual manifest its symptoms? One must accomplish this familiarity to understand the impact Tourette's syndrome (TS) has on the classroom, both for the educator and the student. Secondly, how does TS specifically affect the classroom? What accommodations can be made to increase the opportunity of TS students and concordantly limit the burden to the current educational system? Finally, a brief explanation of IDEA (Individuals with Disabilities Education Act) will clarify the legal mandate to work with Tourette's within the educational system. This review explores the financial ramifications of IDEA on education through the brief investigation of a recent case study in Iowa and comments made at the Congressional Hearing of March 21, 2002.

What is Tourette's syndrome? Cohen and Jankovic describe it as a neurological disorder while Shimberg extends the definition to a neurobiological disorder. Leckman and Cohen also use the term neurobehavioral disorder in their description. It seems that even the experts disagree.

As our knowledge of Gilles de la Tourette's syndrome increases, so does our appreciation for the pathogenic complexity of this disorder and the challenges associated with its treatment" (Leckman, 2002). Tourette's syndrome (TS) is a disorder that is not psychological, yet manifests itself in ways that cause the sufferer to appear crazy or aggressive. The associated tics, movements and verbal expression seem to occur without specific stimulus even though the sufferer may have premonitory thoughts or urges (Bronheim, 1991).

Bronheim describes four basic features of TS as involuntary multiple motor tics, vocal tics, symptoms come and go, and symptoms changing over time. Copropraxia, which affects between 10-30% of people with TS."..is a complex motor tic that incorporates involuntary obscene and otherwise socially unacceptable actions such as 'giving the finger' or grabbing or pointing at one's own or someone else's breasts or genitals" (Shimberg, 1995). Coprolalia is the vocalization of obscene words or inappropriate sounds or phrases. This appears to be the most curious of the manifestations, and the one that generates an almost "car crash mentality" for nonprofessionals, when first exposed to the disorder. Reactions of this nature are human and quite understandable. An orderly society does not normally expect outburst or extraordinary gestures to go unexplained or excused. Human society, although tolerant, does not always accommodate perceived threats with ease. What makes matters worse is the increasing lack of courtesy within our society. People with TS can easily be mistaken for a disgruntled person who is acting out to gain attention. When unacceptable behavior becomes mainstream reaction to daily stress then TS seems less a disorder than life itself. Nevertheless, TS sufferers do not usually intend to irritate others.

Echolalia is the repetition of another's last word; Echopraxia is the repetition of another's gestures, and palilaliais the repetition of one's own words (Shimberg, 1995). These are the immediate challenges for a person with TS. Consider any public forum in which a person suddenly yells obscenities or begins to growl at the speaker. Observe the reaction of any person when his last words are constantly repeated, or his gestures imitated. Anyone is capable of conducting his or her own test in the real world. They will find that society is not readily accepting of behavior outside its norms and be lucky if their victim does not punch them in the nose. The peer pressure upon a student in a classroom setting is an even larger obstacle for a child to overcome.

A patient's own shame about his behavior, his fears about what is taking place inside his mind, and his confusion about the source and nature of his ever-changing symptoms can lead to retreat from the social world" (Leckman and Cohen, 1999).

Most of us are familiar with the classroom. Even the youngest student appreciates the authority of the educator and his place within the classroom setting to some extent. However, introduce a child with TS into this setting and the normal boundaries must be changed. Scenario: The teacher enters a room of children being children, climbing on their chairs, throwing paper wads, giggling, moving and playing. Children are movement. The teacher asks for order and the students find their desks - with the exception of the new girl, Martha. Martha has TS. She finds her seat but stands immediately upon sitting. She sits again, then stands again, sits again, then stands again. The teacher assigns her a seat near the front of the classroom. She finally settles down, but before long begins to clack her teeth. She is aware of what she is doing but unable to resist. The other students do not know how to react. Will their teacher reprimand Martha for her behavior? Should she explain Martha's behaviors to the class? How will she control the rest of the class if Martha's behavior is acceptable? What affect will her behavior have on the other students and on Martha herself?

For many children with TS, the tics are the only problems that may affect their adjustment in the classroom. Researchers and clinicians have observed that there is an association between TS and several other disorders that have a direct affect on behavior and learning. Many times it will be these other problems that present the biggest challenge in the educational setting" (Bronheim, 1991).

The educator faces an important challenge in her job to teach Martha. Fortunately, there are several interventions an educator can use to help the student with Tourette's syndrome in the classroom. One is to avoid bringing additional attention to the student by assigning them a seat in the front of the classroom. Rather, give them a seat on the edge of the room, preferably close to a door. This provides the student with access to the exit in the event they feel they must leave. It also gives them a greater feeling of security in that they have an escape available (Shimberg).

If possible, the educator should attempt to block distracting sounds. The use of headphones may allow the student to concentrate to a greater degree while the other students are listening or reading. Another suggestion by Shimberg is to establish listening cues. Make the child aware that with a specific hand gesture that they need to try to listen.

Bronheim stresses the importance of not reprimanding the student. She points out that as the teacher "you will be modeling the way to react to the tics for other children in the class." Shimberg suggests simplifying assignments into smaller components so that the student can follow the instructions more easily and without frustration. Also, allow extra time for the TS student to complete their assignments. "Their class work tends to deteriorate. These youngsters may re-write a paper many times or make hole in it as they erase and erase, trying to make it flawless" (Shimberg, pg. 18).

The educator must herself become educated in the various methods available for classroom and instructional modification. Given the understanding that stress can aggravate the symptoms of TS, any changes made to allow for a decrease in that stress are helpful. However, the problems presented by each individual case make one single method inadequate to the task. "There are enormous individual differences in the ability to handle stressful or emotionally laden situations. Such differences appear early in life and are apparent at each phase of development" (Leckman and Cohen, pg 107).

The educator can find support from the local Tourette Syndrome Association. Taking the time to familiarize one with methods suggested through this association may also prove to be valuable in dealing with the TS students' parents. Not only must the educator handle a difficult situation in the classroom, they must also be aware that the family has met many challenges with their child. The teacher needs to avoid becoming one of them for her own sake and the sake of the school itself. School systems walk a precarious path in their treatment of children, especially those with disabilities.

Another area of awareness and concern for the educator is the effects of different medications on the TS student. Because TS is so varied in its appearance, the treatments are also varied. "Two classes of drug are most widely used to control tics associated with Tourette's syndrome are a2 adrenergic agonists and neuroleptics" (Leckman, 2002). There are also specific drug regimens used to treat the associated hyperkinetic disorders and tic-related obsessive-compulsive disorders, also from Leckman. How does an educator elicit a response from a student who is groggy from medication? One answer is to engage them in helping activities such as handing out papers or helping the teacher by going to the office to pick up messages. With such a wide range of symptoms, the educator is faced with a difficult dilemma. "Teachers rated students with Tourette's syndrome as significantly more withdrawn and also as more aggressive than other students in their class" (Leckman and Cohen, 1999). Is the child's behavior due to the medication, the condition, or simply part of being a child?

A student with TS experiences difficulty concentrating. She also finds it frustrating to follow complex instruction. "The neuropsychology of Tourette's syndrome has also focused on possible deficits in executive functioning (EF), a broad domain covering planning, goal directed behavior, maintenance of cognitive set and cognitive flexibility, impulse control, sustained attention and effort, and self-regulation" (Leckman and Cohen, 1999).

The educator must respond to these deficits by directing the student in every area of learning and behavior. This is difficult in a classroom setting where there may be twenty other children present and needing attention. Additional training might be necessary for the educator to feel comfortable with the requirements of the TS student "Clearly, if we do not have highly-qualified teachers instructing students, we are never going to get the kinds of results that parents have a right to expect and Congress has the right to demand" (IDEA, 2002, pg. 16. It seems that the best situation would provide one-on-one interaction with the TS student in a special classroom setting. This, however, is not always possible for students with less than severe symptoms. There are specific guidelines a student must meet to be accepted into a special education classroom that is funded by outside resources.

Modification of the teaching method coupled with the disruption caused by TS students, increases the workload for the educator and the other students. Regardless of one's political or moral point-of-view, the fact remains that accommodating TS students in the classroom is both time consuming, difficult, and costly. Why do we do it? As educators, would it not be prudent to separate students with disabilities from the general student population?

On March 21, 2002 the one hundred seventh congress of the United States held their second session on Examining the Implementation of the Individuals with Disabilities Act, As It Applies To Children and Schools. The pamphlet produced from the hearing is 77 pages long and typed in dictionary print. While this review does not have the capacity to delve into the specific and important declarations made by this document, it is critical that the document be addressed in brief. The Document details the steps made by the United States Government to insure that all schoolchildren in the United States have "equal access to education under the Constitution." In 1975 the Education for the Handicapped Act passed, "opening the doors of our public schools to disabled children."

One must read this Act to appreciate the impact of disabilities on education. Tourette's syndrome is one of hundreds of disorders that create the need for accommodation in the classroom. One may consider Tourette's as a specific example of a much broader issue. The publication contains several first hand descriptions of the difficulties faced by children with disabilities. It also cites the methods of implementation for educators to follow, and they are enormous.

Mr. Pasternack delineates the affect it will have on education in the following paragraph.

One of the things that I have learned from my trips around the country, and I am sure you are well aware, Mr. Chairman, is that many school districts are spending a great deal of money on professional development because teachers coming to them from colleges and universities do not have the skills to do the very difficult job that we are asking them to do." lofty goal, yet one that is, yet, under-funded. On page 76 of the same document, one reads, "Congress has only funded up to 15% of the cost of educating students with disabilities. Funding for the infants and toddlers program has not even kept pace with inflation." Take the example of the Cedar Rapids School District. "The school district in Cedar Rapids, Iowa, had already overspent its special education budget by $1 million when the Supreme Court ruled it had to pay for one-on-one nursing for a student - adding $30,000 a year" (McQueen, 1999).

McQueen's article states that special education is one of the fastest growing costs for schools. It is a highly charged issue with the disabled student stuck in the middle. He explains that schools are torn between funding for the special education students and trying to provide adequate services to non-special education students. Also apparent from the article, is that schools are placing students into the special needs category who may not qualify. This misclassification of students inflates the costs to the school because now the school must provide services that should be borne by their parents. It is interesting to note that one example used in the article described the hardships experienced by the family of a 13-year-old boy with Tourette's syndrome.

How do we achieve the goal of "training teachers right" without adequate funding? How many need to be trained and in what areas?

On page 4 of the Act Senator Jeffords states, "IDEA services approximately 6 million disabled children." He then proceeds to note that the funding is not there. Senator Reed includes a prepared statement citing the "mounting frustration over the lack of educational resources." He feels that the "Federal Government must ensure that the state special education programs comply with IDEA." How are the educational systems to do that without the funds? Senator Gregg believes that the law intended to help students is acting as a hindrance to serving them. (IDEA, pg. 9) Page after page of the Hearing document on the Act contains the identical message repeated in bi-partisan unity and politically correct phraseology.