Tourette Syndrome (TS) is a neurodevelopmental disorder (i.e., as the brain develops, the symptoms and the disorder develop) that becomes evident in early childhood or adolescence. It is part of the spectrum of Tic Disorders and is characterized by sudden, rapid, repetitive, involuntary movements and vocalizations called tics.
The average onset of tics is between ages 5 and 7 and typically begin with eye blinking and facial movements. Motor tics often precede the onset of vocal tics and simple tics often precede the onset of complex tics (Leckman, King, & Cohen, 1999).
Coprolalia (curse words or socially inappropriate utterances) occurs in only 10-15% of patients (Leckman, King, & Cohen, 1999).
Boys are three to five times more likely to have TS than girls. People from all racial and ethnic groups can have TS (A National Profile of Tourette Syndrome, 2011-2012 ).
Tics are relatively common in children, affecting 12-18% of the school-aged population (Scahill, Sukhodolsky, Williams, & Leckman, 2005).
Some Tic Disorders may be transient, while others will persist into adolescence and adulthood.
It is common for people with Tourette Syndrome to be affected by another co-occurring condition. Research suggests that it is common for children with TS to also have Attention Deficit Hyperactivity Disorder (ADHD) and 30-40% develop Obsessive Compulsive Disorder (OCD) (Dedmon, 1990).
Tourette is a very unique disorder and each case is very unique. The only thing consistent about TS is the inconsistencies.
People with tic disorders often have premonitory urges. These urges usually occur right before the tic. They feel similar to an urge to sneeze or scratch an itch.
Eye blinking, eye movements, nose movements, mouth movements, facial grimacing, leg movements, shoulder shrugging, arm jerking, abdominal tensing, head jerking, etc.
Hopping, Clapping, smelling, throwing, holding funny expressions, sticking out the tongue, kissing, pinching, tearing paper, touching other people or things, twirling, copropraxia (demonstrating socially inappropriate gestures), tearing paper, etc.
Whistling, coughing, sniffing, screeching, animal noises (e.g., barking), grunting, throat clearing, humming, tongue clicking, yelping, etc.
Syllables, Phrases which may or may not be meaningful, Coprolalia (vocalizing socially unacceptable words) Palilalia (repetition of one's own words), Echolalia (repeating words or phrases of others) differences in speech patterns (e.g., unusual rhythms, tone accents, intensity of speech), blocking, etc..
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.
To be diagnosed with Tourette Syndrome (TS), a person must:
Have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
Have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
Have tics that begin before age 18 years.
Have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).
To be diagnosed with Persistent (Chronic) Motor or Vocal Tic Disorder, a person must:
Have one or more motor tics (for example, blinking or shrugging the shoulders) or vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase), but not both.
Have tics that occur many times a day nearly every day or on and off throughout a period of more than a year.
Have tics that start before age 18 years.
Have symptoms that are not due to taking medicine or other drugs, or due to having a medical condition that can cause tics (for example, seizures, Huntington disease, or postviral encephalitis).
Not have been diagnosed with TS.
To be diagnosed with Provisional Tic Disorder, a person must:
Have one or more motor tics (for example, blinking or shrugging the shoulders) or vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase).
Have been present for no longer than 12 months in a row.
Have tics that start before age 18 years.
Have symptoms that are not due to taking medicine or other drugs, or due to having a medical condition that can cause tics (for example, Huntington disease or postviral encephalitis).
Not have been diagnosed with TS or persistent motor or vocal tic disorder.
Tics come and go over time, varying in type, frequency, location, and severity.
The first symptoms are usually in the head and neck area and may progress to muscles of the trunk and extremities.
Motor tics generally precede development of vocal tics and simple tics often precede complex tics.
Tics can be impacted by stress, fatigue, anxiety, illness, hunger, excitement, talking about tics/being reminded not to tic, scheduling changes (e.g., returning to school, Holidays, vacations, etc.), being alone, hunger, and menstruation.
Tics can be improved by sleep, activities that require focused attention and motor control, relaxation, and physical activity.
Tics can be suppressed for a short period of time.
CBIT consists of three important components:
Training the individual to be more aware of his/her tics
Training the individual to engage in a competing behavior when he/she feels the urge to tic
Making changes to day to day activities in ways that can be helpful in reducing tics
For more information, CLICK HERE
TicHelper is based upon Comprehensive Behavioral Intervention for Tics, or CBIT, and was developed by experts in the field of Chronic Tic Disorders and Tourette Syndrome. The program is an 8-week intervention that involves education about tics, skill-based lessons, and daily practice.
For more information, CLICK HERE
The Tourette Association of America can provide FREE education in-service presentations (virtual presentations during the COVID-19 pandemic) for your child’s school.These presentations cover tips for managing Tourette Syndrome and Tic Disorders in the classroom, accommodations, as well as the impact of common co-occurring conditions on the student.
To schedule a presentation or learn more, please visit tourette.org/classroom-training.
The Keeper: The Unguarded Story of Tim Howard by Tim Howard
Insignificant Events in the Life of a Cactus by Dusti Bowling
Front of the Class by Brad Cohen
An Unlikely Strength: Tourette Syndrome and the Search for Happiness in 60 Voices , by Larry Barber
The Life That Chose Us: Educators with Tourette Syndrome Paperback by Dr. Jennifer K. Stenger
Teaching the Tiger A Handbook for Individuals Involved in the Education of Students with Attention Deficit Disorders, Tourette Syndrome or Obsessive-Compulsive Disorder by Marilyn Dornbush & Sheryl Pruitt
ABC's of Tourette Syndrome by Hailey Sasine Burden
What Happened to Twitch Morgan? A life with Tourette Syndrome by David Jowsey
Kissing Doorknobs by Terry Spencer Hesser
Icy Sparks by Gwyn Hymaan Rubio
Tourette Syndrome: 1o Secrets to a Happier Life by Michael S. Okun
Taking Tourette Syndrome to School by Tira Krueger
Tic Talk: Living with Tourette Syndrome, A 9-Year-Old Boy's Story in His Own Words by Dylan Peters
Coping with Tourette Syndrome: A Workbook for Kids with Tic Disorders by Sandra Buffolano
Forget Me Not by Ellie Terry
The Tourette Association of America (TAA) is working diligently to provide ample programming and events for individuals, families, educators and medical professionals in 2021. Your involvement and support of TAA events and initiatives is crucial to raising awareness and understanding of Tourette Syndrome and Tic Disorders.
Tourette Syndrome: Getting Started
Dr. John T. Walkup, MD
Division of Child and Adolescent Psychiatry
Weill Cornell Medical College, New York
Part 1
Part 2
Part 3
Part 4
Billie Eilish-An American singer and songwriter
Howie Mandel-A Comedian and host of Deal or No Deal
Steve Wallace-A NASCAR driver
Mahmoud Abdul-Rauf-A former basketball player known for having the most accurate free-throw shooting records
Brad Cohen-An American motivational speaker, teacher, school administrator, and author
A Virtual Quilt -The Tourette Association of America has designed a virtual quilt to showcase the Tourette Syndrome and Tic Disorder community, entwined with stories of inspiration, hope and community. This virtual quilt is a narrative of our unique experiences and stories to embrace and comfort one another. TS may impact everyone differently, but we are all woven together in community. It symbolizes our resilience, resourcefulness, and optimism. We are stronger together.
Are you interested in receiving the latest news in #TouretteSyndrome and Tic Disorders? Sign up for emails from the Tourette Association of America ➡️ tourette.org/get-connected
Tourette Syndrome often occurs with other neurodevelopmental and neuropsychiatric conditions. The most common co-occurring conditions include the following:
Learning difficulties
Behavior problems
Anxiety
Mood problems
Social skills deficits and social functioning
Sleeping problems
For more information, CLICK HERE
The Tourette Association of America has FREE Online Support Groups
The options include three parent-focused groups - Tourette Syndrome 101, Living with Tourette Syndrome, and TS and Explosive Behaviors/Rage, as well as a young adult group and a Spanish-speaking group.
Click Here to Register for an Online Support Group
Click Here for the Tourette Association of America Facebook Page
Local Support Group:
Fresno Tourette Syndrome Support Group Facebook Page
Tourette Association of America Youtube Channel -This Youtube channel is home to hundreds of videos with content from webinars to advice to personal stories, and it serves as a fantastic resource for the #TouretteSyndrome and Tic Disorder community.
Tourette Association Youth Ambassador Program
Since its establishment in 2005, the Tourette Association Youth Ambassador Program has been an ever-expanding group of teens with TS (and their siblings, friends and classmates) who speak about Tourette Syndrome and tic disorders to their peers at school, sports leagues, scout troops, camps and after school programs. The purpose of the Program is to spread tolerance of and understanding about TS.
The YA Program trains teens to advocate for themselves and for others and to educate their peers with accurate information about this often misunderstood and misdiagnosed disorder. The Program has also aimed to educate lawmakers and the public about TS, and to raise awareness about the impact of federal legislation on the health and well-being of people with TS.
The teen and their parent or guardian comprise a YA Team – with the teen giving presentations and the adult helping with scheduling and other arrangements.
The United States Department of Justice considers Tourette Syndrome a qualifying disability. Individuals with Tourette Syndrome are protected under three laws:
ADA (Americans with Disabilities Act)
Section 504
IDEA (Individuals with Disabilities Education Act)
Participate in the TicFit workout series!
About TicFit: This workout series is designed as an exercise protocol to help you use a specific way of exercising to manage your tics. Every tic interrupts your breath. Sometimes breathing is the tic. Activities like exercise are proved to help to reduce motor tics and the goal of this series is to provide each person more specific direction. Cardio helps because it regulates your breath but you can do that with strength workouts as well.
For more information go to the TicFit Website