Contact- Deborah Dominguez-Clark Deborah.Clark@ped.nm.gov or your EA EA/LEA assignments
Tourette’s syndrome (TS) is a neurological disorder characterized by involuntary tics and vocalizations and often the compulsive utterance of obscenities. The main symptoms of TS are tics. Tics are sudden twitches, movements, or sounds that people do repeatedly. People who have tics cannot stop their body from doing these things. For example, a person might keep blinking over and over. Or, a person might make a grunting sound unwillingly. Having tics is a little bit like having hiccups. Even though you might not want to hiccup, your body does it anyway. Sometimes people can stop themselves from doing a certain tic for a while, but it’s hard. Eventually the person has to do the tic.
Symptoms usually begin when a child is 5 to 10 years of age. The first symptoms often are motor tics that occur in the head and neck area. Tics usually are worse during times that are stressful or exciting. They tend to improve when a person is calm or focused on an activity.
The types of tics and how often a person has tics changes a lot over time. Even though the symptoms might appear, disappear, and reappear, these conditions are considered chronic.
In most cases, tics decrease during adolescence and early adulthood, and sometimes disappear entirely. However, many people with TS experience tics into adulthood and, in some cases, tics can become worse during adulthood.
Although the media often portray people with TS as involuntarily shouting out swear words (called coprolalia) or constantly repeating the words of other people (called echolalia), these symptoms are rare, and are not required for a diagnosis of TS.
TS does not affect a person’s intelligence, but students with TS may have special education needs to succeed in school. The symptoms of TS (tics, behavior, anxiety) can interfere with the student’s learning process. Interventions that address the TS symptoms can improve the student’s educational outcomes for people with TS. Students with TS can be helped through the use of specialized educational techniques and strategies individualized to the student’s needs. For some students with TS, an educational evaluation may be needed. Students who are identified as ‘Other Health Impaired” are entitled to an Individualized Education Plan (IEP) that provides assistance for the student’s specific educational needs in school. An IEP is an important tool that addresses and can minimize the effects of the learning disabilities the student is experiencing. Many students with TS are also assisted through 504 Plans which can be developed to meet the needs of those students with TS.
There are many excellent resources on the internet providing information about Tourette’s Syndrome, including information for parents and educators. Some of these resources include:
Centers for Disease Control and Prevention (CDC), Tourette Syndrome, https://www.cdc.gov/ncbddd/tourette/index.html. This site includes information about Tourette Syndrome, its diagnosis and treatment, and information for parents and educators.
Tourette Association of America, https://tourette.org/, This site includes extensive information about all aspects of Tourette Syndrome and, among other things, includes a Resource Directory with webinars and guides for parents and educators, https://tourette.org/resource-directory/, and information on what type of support a student with Tourette Syndrome may need in school,
National Institute of Health National Institute for Neurological Disorders and Stroke, https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tourette-Syndrome-Fact-Sheet
New Mexico Chapter of Tourette Syndrome Association, https://tourette.org/chapter/nm/
University of New Mexico Continuum of Care, Tourette Syndrome, https://hsc.unm.edu/medicine/departments/pediatrics/divisions/continuum-of-care/pdf/tourettes-syndrome.pdf
New Mexico Department of Public Education Department Section 504 Manual, https://webnew.ped.state.nm.us/bureaus/safe-healthy-schools/section-504-resources/ (in process of revision)
https://tourette.org/resources/overview/
https://www.pacer.org/bullying/stories/mystory.asp?id=2064
https://tourettesyndromes.org/
https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-video-library/
The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants and corporate sponsorship. NORD is solely responsible for the content.