Tourette Syndrome

DISABILITY CATEGORY

Other Health Impairment—Tourette Syndrome

TYPES

Symptoms range from mild to severe, but most cases are mild.

DEFINITION

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines Tourette Syndrome under “other health impairment,” which means…

“…having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and adversely affects a child’s educational performance.”

[34 code of Federal Regulations §300.8(c)(9)]

OTHER DEFINITIONS

Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The first symptoms of TS are almost always noticed in childhood. Some of the more common tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking. Perhaps the most dramatic and disabling tics are those that result in self-harm such as punching oneself in the face, or vocal tics including coprolalia (utter swear words) or echolalia (repeating the words of phrases of others). Many with TS experience additional neurobehavioral problems including inattention, hyperactivity and impulsivity, and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors. (NINDS, 2012)

FACTS AND STATS

As TS often goes undiagnosed, no exact figure can be given. But authoritative estimates indicate that some 200,000 in the United States are known to have the disorder. All races and ethnic groups are affected. (TSA, 2012)

CAUSES

No definite cause has yet been established, but considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine. Genetic studies indicate that TS is inherited as a dominant gene, with about 50% of passing the gene from parent to child. Sons are three to four times more likely than daughters to exhibit TS. (TSA, 2012).

PREVENTION

There is no known prevention.  (TSA, 2012)

CHARACTERISTICS

Associated Behaviors—additional problems may include

MEDICAL TREATMENT

Because tic symptoms do not often cause impairment, the majority of people with TS require no medication for tic suppression. However, effective medications are available for those whose symptoms interfere with functioning. There is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms. Effective medications are also available to treat some of the associated neurobehavioral disorders that can occur in patients with TS. (NINDS, 2012).

PROGNOSIS

Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood. As a result, some individuals may actually become symptom free or no longer need medication for tic suppression. (NINDS, 2012).

EDUCATIONAL IMPLICATIONS

The following are tips for dealing effectively with TS symptoms in the classroom setting:

Accommodations for Attention Problems

Accommodations for Writing Problems

Even very bright children with TS who have no trouble grasping concepts may be unable to finish written work because of visual-motor impairments. Sometimes it appears as though the student is lazy or avoiding work, but in reality the effort to record the work on paper may be overwhelming. A number of accommodations can be made to help children with writing difficulties succeed in the classroom:

Accommodations for Language Problems

Children with TS may repeat their own words or those of someone else. This may sound like stuttering but it actually involves the utterance or words or whole phrases. Other students may exploit this problem by whispering inappropriate things so that the child with TS will involuntarily repeat them and get into trouble. Be alert to this provocation. This urge to repeat can be seen in reading and writing activities. Students may be unable to complete work because they "get stuck" rereading or rewriting words or phrases over and over. This is called "looping." The following can be helpful:

ORGANIZATIONS

Joshua Child and Family Development Center

7611 State Line Road, Suite 142
Kansas City, MO 64114
Phone: (816) 763-7605
Fax: (816) 763-1802

The Joshua Child and Family Development Center is a non-profit organization that supports programs designed to improve the lives of individuals and families living with Tourette Syndrome, Asperger Syndrome, Obsessive Compulsive Disorder and their Associated Disorders through research, education, social and clinical programs.

Tourette Syndrome Association, Inc.

42-40 Bell Boulevard
Bayside NY 11361-2820
718-224-2999 or 888-486-8738
www.tsa-usa.org

Founded in 1972 in Bayside New York, TSA is the only national voluntary non-profit membership organization in this field. Our mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome. We offer resources and referrals to help people and their families cope with the problems that occur with TS. We raise public awareness and counter media stereotypes about TS. Our membership includes individuals, families, relatives, and medical and allied professionals working in the field Today, TSA has grown into a major national health-related organization with 35 U. S. Chapters, 300 support groups, and International Contacts around the world.

WE MOVE (Worldwide Education and Awareness for Movement Disorders) 

204 West 84th Street
New York NY 10024
Phone: 212-875-8312 
www.wemove.org

WE MOVE is the Internet's most comprehensive resource for movement disorder information and education and the only organization of its kind. Since 1991, this 501(c) 3 not-for-profit organization has been educating and informing patients, professionals, and the public about the latest clinical advances, management, and treatment options for neurologic movement disorders. At WE MOVE, we believe that increasing knowledge and understanding promote timely, accurate diagnosis, and up-to-date treatment, resulting in a better quality of life for individuals affected by these often devastating conditions.

RESOURCES

General

For Parents, Children and Educators

Video