Tourette Syndrome

(Other Health Impairment)

DEFINITION

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) includes 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.

(National Institute of Neurological Disorders and Stroke, NINDS, 2019)

TYPES

Tourette Syndrome is one type of Tic Disorder. Tics are involuntary, repetitive movements and vocalizations. They are the primary symptoms of a group of childhood-onset neurological conditions known collectively as Tic Disorders and individually as Tourette Syndrome (TS), Persistent (Chronic) Motor or Vocal Tic Disorder, and Provisional Tic Disorder.

These three Tic Disorders are named based on the types of tics present (motor, vocal/phonic, or both) and by the length of time that the tics have been present. Below are the criteria that a doctor or other health care professional will use to diagnose TS or other Tic Disorders. There is no test to confirm the diagnosis of Tic Disorders, but in some cases, tests may be necessary to rule out other conditions.

Tourette Syndrome (TS), also known as Tourette’s Disorder: 1) At least 2 motor tics and at least 1 vocal (phonic) tic have been present, not necessarily at the same time. 2) Tics may wax and wane in frequency but have occurred for more than 1 year. 3) Tics started to appear before the age of 18. 4) Tics are not caused by the use of a substance or other medical condition.

Persistent (Chronic) Motor or Vocal Tic Disorder: Either motor tics OR vocal tics have been present for more than 1 year; cannot be both motor and vocal tics.

Provisional Tic Disorder: Motor and/or vocal tics have been present for less than 1 year, and have not met the criteria for TS, persistent (chronic) motor, or vocal tic disorder.

(Tourette Syndrome Association, TSA, 2019)

FACTS AND STATS

The current estimates are that 1 out of every 160 children between the ages of 5-17 in the United States has TS and that 1 out of every 100 children has TS or another Tic Disorder. Using 2010 US Census data, it is estimated that approximately 300,000 children in the US is affected by Tourette.

(TSA, 2019)

CAUSES

The causes of Tourette and other Tic Disorders remain unknown. The conditions are hereditary and so genetics clearly play a role in many, if not most or all, occurrences of the conditions. Environmental, developmental or other factors may also contribute to these disorders but, at present, no specific agent or event has been identified. Therefore, TS and Tic Disorders are likely to be caused by complex interactions between genetic and other factors which may vary in different individuals. Studies are underway to find the genes and other factors underlying the development of these disorders.

(TSA, 2019)

PREVENTION

There is no known prevention for tic disorders or Tourette.

CHARACTERISTICS AND DIAGNOSIS

For the diagnosis of Tourette syndrome, both multiple motor tics and vocal tics should have been present at some time during the disorder, although no necessarily concurrently; tics should occur many times a day (usually in bouts), nearly every day, or intermittently throughout a span of more than one year; a tic-free period of more than 3 consecutive months does not occur; onset is before 18 years of age; and the disorder is not due to the direct physiological effects of a substance or general medical condition.

Motor Tics

Motor tics are movements. Simple motor tics include but are not limited to: eye blinking, facial grimacing, jaw movements, head bobbing/jerking, shoulder shrugging, neck stretching, and arm jerking. Complex motor tics involve multiple muscle groups or combinations of movements and tend to be slower and more purposeful in appearance (i.e. hopping, twirling, jumping).

Vocal/Phonic Tics

Vocal (phonic) tics produce a sound. Simple vocal tics include but are not limited to sniffing, throat clearing, grunting, hooting, and shouting. Complex vocal tics are words or phrases that may or may not be recognizable but that consistently occur out of context. In 10-15% of cases, the words may be inappropriate (i.e. swear words, ethnic slurs, or other socially unacceptable words or phrases). This type of vocal tic, called coprolalia, is often portrayed or mocked in the media as a common symptom of TS.

Tics typically emerge between the ages of 5-7 years, most often with a motor tic of the head and neck region. They tend to increase in frequency and severity between the ages of 8-12 years. Most people with TS show noticeable improvement in late adolescence, with some becoming tic-free. A minority of people with TS continue to have persistent, severe tics in adulthood.

Tics can range from mild to severe and, in some cases, can be self-injurious and debilitating. Tics regularly change in type, frequency, and severity—sometimes for reasons unknown and sometimes in response to specific internal and external factors, including stress, anxiety, excitement, fatigue, and illness.

Associated Behaviors and Conditions—additional problems may include…

  • Obsessions, which consist of repetitive unwanted or bothersome thoughts
  • Compulsions and ritualistic behaviors. Examples include touching an object with one hand after touching it with the other hand to "even things up," repeatedly checking to see that the flame on the stove is turned off, or repeating a sentence many times until it "sounds right."
  • Attention Deficit Disorder (ADD) with or without Hyperactivity (or ADHD).

(TSA, 2019)

MEDICAL TREATMENT

There is no cure for Tourette syndrome, but thanks to years of dedicated research, there are various treatment options. 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, 2019)

When tics become problematic or interfere with daily functioning, behavioral treatment or medication may be considered.

Because each patient is unique, the individual or family should work with a clinician to determine an appropriate treatment plan. It may take some time and patience to determine the most effective approach. A clinician may recommend first treating one of the co-occurring conditions if it is more bothersome or problematic than the tics. It is usually best to begin with an effective treatment that is unlikely to cause any side effects.

Some available therapies include: Deep Brain Stimulation (DBS), Medications/ Pharmacology, Behavior Modification (Comprehensive Behavioral Intervention for Tics or CBIT), Speech Therapies

(TSA, 2019)

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, 2019)

EDUCATIONAL IMPLICATIONS

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

Accommodations for Attention Problems

Some movements and noises can be annoying or disruptive to the class. Please remember that they are occurring involuntarily, and do not react with anger or annoyance! This requires patience, but reprimanding a student with TS student is like disciplining a student with cerebral palsy for being clumsy. If the teacher is not tolerant, others in the class may feel free to ridicule the child with TS.

If some aspect of the child's tics affects the privacy or safety of others (e.g., touching others), it is important to find ways to work around the problem, but acceptance of the child is critical even when the behaviors are unacceptable.

  • Provide opportunities for short breaks out of the classroom. Time in a private place to relax and release the tics can often reduce symptoms in class. Private time may also enhance the student's ability to focus on schoolwork, because energy will not be used to suppress the tics.
  • Allow the student to take tests in a private room, so energy will not be expended on suppressing tics during a quiet time in the classroom.
  • If tics are particularly disruptive, consider eliminating recitation in front of the class for a while. Oral reports might be tape recorded, so those skills can be judged without the added stress of standing before the class.
  • Work with other students to help them understand the tics and reduce ridicule and teasing. School counselors, psychologists, and representatives from the local Tourette Syndrome Association chapter can provide information and appropriate audio-visual materials for students and staff.

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:

  • Modify written assignments by: having the child copy down and complete every other math problem; allowing the child to present a taped report rather than a written one; allowing a parent to record work or act as "secretary" so the child can dictate his ideas to facilitate concept formation. It helps to focus on what the child has mastered rather than the quantity of written work produced.
  • Since the student with visual-motor problems may not be able to write quickly enough to get important information on paper, assign a reliable "note-taking" buddy or "homework partner" who can use carbon paper to make copies of notes and assignments. Be sure to work this out discreetly, so the child with TS does not feel different in yet another way.
  • On tests with computer scoring sheets, allow the student to write on the test booklet. This helps avoid poor grades caused by the visual confusion that can occur when using the grid answer sheet.
  • When possible, allow as much time as needed for taking tests.
  • Students with visual-motor problems may be poor spellers. Rather than penalizing for spelling errors, encourage proof-reading and using a word processor with a spell checker.
  • Students with TS seem to have special problems with written math. Encourage the use of manipulatives in teaching math and the use of a calculator to perform rote calculations. Using grid paper with large boxes or turning regular lined paper sideways to form columns can also help the child maintain straight columns when calculating.

Accommodations for Language Problems

  • Provide visual input as well as auditory whenever possible. The student could receive written directions as well as oral ones, or have a copy of a lecture outline to follow while listening to instructions. Pictures and graphs that illustrate the text are usually quite effective.
  • Give directions one or two steps at a time. Ask the student to repeat the instructions. Then have the student complete one or two items and check with you to see that they have been done properly.
  • If you notice a student mumbling while working, suggest a seat where he will not disturb others. Sometimes quietly repeating instructions or information to himself can help a student grasp and remember the assignment.

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:

  • When reading, give the child a note card with a cut out "window" that displays only one word at a time. The student slides the window along while reading so the previous word is covered and the chances of getting stuck are reduced.
  • Have the student take a break or switch to other work.
  • When writing, have the student use pencil or pen without an eraser or allow the student to complete the work orally. Brief reminders to move on may help.
  • Seat the child in front of the teacher for all instruction and directions to minimize the visual distraction of classmates.
  • Seat the child away from windows, doors, or other sources of distraction, i.e., where reading groups meet.
  • Give the student an "office," a quiet workplace. This could be in a corner, the hall, or the library. This place should not be used as a punishment, but rather a place the student can choose to go to when focusing becomes more difficult.
  • Have the student work in short intense periods with breaks to run an errand or simply wiggle in the seat.
  • Change tasks frequently. For example, complete five math problems, then do some spelling, etc.
  • Contract for work to be done in advance. For example, finish a specific number of problems by a certain reasonable time. Short assignments with frequent checks are more effective than two or three sheets of independent work at one time.
  • With younger children, simple gestures, such as a hand on the student's shoulder, can be a helpful reminder to focus during listening periods.

(Council for Exceptional Children)

See The Tourette Association of America (TSA) for comprehensive education resources for parents, children and teachers. Other pages provide useful strategies for classroom hep, bullying prevention, and more.

ORGANIZATIONS

Tourette Association of America
https://tourette.org
42-40 Bell Boulevard, Suite 205
Bayside NY 11361
888-486-8738
support@tourette.org

Founded in 1972, The Tourette Association of America (formerly known as the Tourette Syndrome Association) has emerged as the premier national non-profit organization working to make life better for all people affected by Tourette and Tic Disorders. 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. Program development, education and medical programs, government outreach, adherence to the Tourette Association of America’s mission, maximizing efforts, minimizing expenses, TeamTourette events, awareness month, publications, chapter relations, research grants, scientific and medical conferences, are ongoing efforts of the Tourette Association of America’s full-time professional staff.

International Parkinson and Movement Disorder Society
https://www.movementdisorders.org/MDS.htm
555 East Wells Street, Suite 1100
Milwaukee, WI 53202
414.276.2145

The International Parkinson and Movement Disorder Society (MDS) is a professional society of clinicians, scientists, and other healthcare professionals who are interested in Parkinson’s disease, related neurodegenerative and neurodevelopmental disorders, hyperkinetic movement disorders, and abnormalities in muscle tone and motor control.

Last updated March 2020.