Tourette's Syndrome (TS) is a chronic constellation of neurobehavioral symptoms and associated features including severe tics. This syndrome, originally described by Gilles de la Tourette in 1857, is a very complex disorder. Family studies often indicate a genetic etiology; however a specific link to TS has yet to be uncovered. An interaction between environmental influences (e.g., low birth weight or lack of assymetry in the basal ganglia in the brain) and a genetic predisposition is the most likely determinant for the expression of Tourette's.

TS is a severe type of tic disorder and is relatively uncommon, while milder types of tic disorders are more commonly diagnosed. Researchers estimate the prevalence of TS as between 1:2000 and 1:2500., while transient tics (relatively minor tics that occur for a period of time and disappear) occur in 5-25% of all children at some time. About 1-2% of the school age population experience chronic tics, with TS the most severe and least common. Males are affected by TS much more than females. While TS is not life threatening, there is no cure. Children and adolescents with Tourette's Syndrome sometimes (not always) require special consideration in school to optimize their learning, behavior control and social-emotional development. Accommodations may vary form nothing more than an awareness of the child's condition to more intensive interventions, such as medication, psychotherapy, behavioral management, systems intervention or a combination of approaches.

Characteristics of TS

Diagnostically, TS is defined in terms of involuntary motor and vocal tics which can be classified as simple or complex. Simple motor tics are sudden, brief movements such as eye blinking, facial grimaces or shoulder shrugging. Complex motor tics tend to be slower, more involved behaviors that often appear deliberate in nature, such as touching objects, copropraxia (obscene gesturing) or echokinesis (immitating the movement of others). Simple vocal tics are sudden inarticulate sounds such as throat clearing, barking or grunting. Complex vocal tics, which are often mistaken as purposeful in intent, migh include the vocalization of syllables, words or phrases completely out of context. Coprolalia, which is the utterance of obscene or socially inapprpriate words, is seen in approximately one in five cases.

The diagnosis of TS generally can not be made until a tic pattern has been established. First tics usually appear at ages 6-8(and almost always by age 13), and these are usually simple motor tics. Later, vocal and more complex tics emerge, often replacing the earlier motor tics, and become worse in adolescence. The condition is life-long, although the nature of the symptoms can change over time and with treatment.

There is really no "typical" child with Tourette's Syndrome. It is the nature of the disorder to change over time in terms of symptom severity and the anatomic location and frequency of tics. The symptoms and features that a child with TS presents in September may look completely different in June. Additionally, persons with TS are typically able to suppress the expression of tics and symptoms for a short period of time. The symptom picture presented by one child with TS may be different from that of another child with the disorder.

The waxing and waning of symptom severity is a hallmark of Tourette's Syndrome. A person with Tourette's may go for days or weeks with no apparent symptoms, only to have the tics reappear. This feature, along with the involuntary nature of TS, is often misunderstood. Teachers, principals and even parents will point to a period of time when symptoms and associated features were less apparent or less severe, and take it as an indication that the child really can control his behavior. Then when the symptoms inevitably flare up again, the child is unfairly regarded as willfully misbehaving. Misunderstanding can be the most debilitating feature of Tourette's Syndrome.

Assciated features: In addition to the tics, there are several features that may be associated with Tourette's Syndrome. Features that can affect a child's school performance and social-emotional development include symptoms of obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), learning disabilities (LD), neuropsychological anomalies, school adjustment problems and conduct or behavior disorders. Similar to tics, these features tend to be involuntary and variable in the degree to which they are expressed.

Tourette's Syndrome does not affect a child's intellectual development. Learning problems in terms of processing, impaired visual-motor abilities and fine motor skills have been associated with TS. The impulsiveness and distractibility of ADHD can interfere with a child's ability to maintain his attention and his behavior in school. The learning needs of children with TS are serviced along the entire continuum of educational interventions from indirect consultative services to more restrictive special education placements.

Stress and anxiety can exacerbate TS symptoms and associated features. Transition and change (including the anticipation of change)are generally quite problematic for a child with TS. Children with TS are also susceptible to emotional stressors commonly associated with other chronic conditions like diabetes or hemophilia (e.g., denial, social isolation, depression, 'why me?').

Developmental Issues

It is not uncommon to see social skills deficits and delays in emotional development in children with TS. Children do not automatically internalize a value system that tells them if they are "good" children or "bad" children. They compare themselves to their peers and guage their self esteem on how others, especially adults, respond to them. A child with TS does not automatically understand that the noises he makes, or the "evening-up" rituals she has to do, or the distracting twitch in his cheek, or his aggressive behavior are the effect of some neurological anomoly. What a child knose is these behavioral quirks sometimes get him into trouble, make him feel different from the other children and disrupt his school work. If these assaults on the child's self esteem are not dealt with in a developmentally appropriate manner, the results may include a dangerously low sense of self worth, social isolation, or depression.

Treatment Issues

Generally, treatment for TS involves directly treating the tic symptoms and treating accompanying problems. Mild tics are generally not treated with medication, but medication might be used to treat the accompanying difficulties such as mood difficulties (depression, anxiety), obsessive behaviors, attention deficits, etc. Some medications for one type of problem (such as the use of Ritalin for ADHD) will increase the TS symptoms (tics), making medical management complicated. Some children with TS will need two or more medications to address the complexity of symptoms. Good medical monitoring of the effects of medication is supported by close communication with the family and school.

Behavior interventions are often used in combination with medication to help children with TS control their symptoms. Token economies, relaxation training, anger-coping training and social skills training can all be helpful in giving a child with TS more control over his or her symptoms and learning to compensate effectively. Teachers and parents can also be taught to provide support, cues and reinforcement to children with TS, and to help peers and siblings better understand the disorder and how they can help the child with TS.

What Can I Do as a Parent?

Learn as much as you can about TS: As a parent your are the primary advocate for your children. Advocacy for a child with Tourette's Syndrome begins with understanding, which is gained by learning as much as possible about the disorder. Talk to other parents of children with TS (contact the local chapter of the Tourette's Syndrome Association). Become the expert in your child's particular case of TS. Be aware of how your child's tics and associated features are manifested. Does Tourette's effect his/her learning or behavior in school? If so, how? Know the expected effects (and side effects) of prescribed medications. Anticipate stressful times for your child which may be associated with a change in symptom severity (e.g., the beginning or end of the school year, Little League try-outs, social or family events).

Establish consistent behavioral expectations: Discipline with a child with TS can be difficult to maintain. Nevertheless, responsibility and consequences for behavior are "real world" concepts that children with TS need to learn, notwithstanding their condition. Establish firm but flexible behavioral expectations, tempered by a compassionate appreciation for the effects of TS. Don't allow TS symptoms to be used as an excuse or manipulation.

Work with school personnel: As the primary advocate for your child, establish alliances with personnel at your child's school. Meet with your child's teacher before the first day of every school year. Provide him/her with general information about TS, describe the previous efforts of other teachers, and tell about your child as an individual with TS. The school psychologist is a great resource to facilitate such a meeting.

What Can I Do as a Teacher?

Increase awareness of TS: Educational interventions begin with an awareness of Tourette's Syndrome and its associated features (such awareness is frequently the only intervention necessary). Pamphlets and videos provided by the Tourette's Syndrome Association are a good place to start, however the most valuable resoures are often teh child's parents and previous teachers, and (especially with adolescents) the child himself. Such an awareness will enable the teacher to respond to a child's involuntary expression of tics with understanding and support, a response which becomes a model for the other children in the class as well as the child with TS.

Be sensitive to conditions that impact tics: Teachers need to be alert to conditions that might disrupt a child's ability to attend to his/her schoolwork. While children with TS may be able to suppress their tics for a period of time, it takes a great deal of concentration to do this, which can distract from their attention to school work. Allowing the child to take a brief respite time out of the classroom to privately release tic urges is a recommended practice in some cases. It is also sometimes helpful to give the child advanced preparation for any out-of-the-ordinary transitions (e.g., field trips) to relieve stress he or she may experience related change.

Make academic accommodations: While teachers should not be afraid to academically challenge a child with TS, occasionally it is necessary to make certain accommodations. Sometimes a child with TS might need to take a test privately and/or orally. If the child has problems with writing, the use of a computer or tape recorder may be a more effective means of expression. Shortened written assignments may also be appropriate.

Consult wit support personnel: School psychologists, social workers, counselors, school nurses and other support personnel play many roles in the education of a child with Tourette's Syndrome, such as advocate, consultant, evaluator, counselor, and liaison between home and school and community providers. Providing emotional support, enhancing self-esteem and academic competence are as important as suppressing tics and other symptoms.