What is Tourette Syndrome?

• 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.  

Motor tics are tics that cause movement.

Examples of Simple Motor Tics

• Eye blinking, eye movements, nose movements, mouth movements, facial grimacing, leg movements, shoulder shrugging, arm jerking, abdominal tensing, head jerking, etc.

Examples of Complex Motor Tics

• 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.

Vocal tics are tics that produce a sound.

Examples of Simple Vocal Tics:

• Whistling, coughing, sniffing, screeching, animal noises (e.g., barking), grunting, throat clearing, humming, tongue clicking, yelping, etc. 

Examples of Complex Vocal Tics:

• 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.

1. The Keeper: The Unguarded Story of Tim Howard by Tim Howard

2. Insignificant Events in the Life of a Cactus by Dusti Bowling

3. Front of the Class by Brad Cohen

4. An Unlikely Strength: Tourette Syndrome and the Search for Happiness in 60 Voices , by Larry Barber

5. The Life That Chose Us: Educators with Tourette Syndrome Paperback by Dr. Jennifer K. Stenger 

6. 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

7. ABC's of Tourette Syndrome  by Hailey Sasine Burden

8. What Happened to Twitch Morgan? A life with Tourette Syndrome by David Jowsey

9. Kissing Doorknobs by Terry Spencer Hesser

10. Icy Sparks by Gwyn Hymaan Rubio

11. Tourette Syndrome: 1o Secrets to a Happier Life by Michael S. Okun

12. Taking Tourette Syndrome to School by Tira Krueger

13. Tic Talk: Living with Tourette Syndrome, A 9-Year-Old Boy's Story in His Own Words by Dylan Peters

14. Coping with Tourette Syndrome: A Workbook for Kids with Tic Disorders by Sandra Buffolano

15. 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.

• January 9, 2021 at 11:30am-5:30pm EST: TAA Teen Summit
  This fun and educational event provides a forum for teens and youth to learn more about TS and Tic Disorders. Teens will connect with peers and discuss topics that are important to them.

• January 12, 2021 at 7pm EST: TAA Bingo Night
  TAA virtual Bingo Night works just like the real thing. Purchase a ticket, get your virtual cards, encourage your friends and family to join you, and have fun alongside the Tourette Syndrome community across the country!

• January 20, 2021 at 7pm EST: Just for Dads: A Discussion on Tourette Syndrome and Parenting
  This discussion focuses on the father’s perspective of supporting children with TS. Paul Raleigh, Marc F. Schmidt, Ph.D., and Keith Coffman M.D., who have kids with TS within the age range of 5-23, will lead the discussion and share their experiences.

• January 28, 2021 at 7pm EST: TAA Trivia Night
  Save the Date! The TAA has a fun trivia session planned for the community!

• February 10, 2021 at 7pm EST: Tourette Syndrome: Managing OCD and Anxiety in School
  This webinar, as part of the Education Professional Webinar Series, will uncover how OCD and anxiety can present with Tourette Syndrome.

• February 26-27, 2021 & March 2-3, 2021: TAA Youth Ambassadors Training
  Applications for the next TAA Youth Ambassador training are due Sunday, January 10. The program trains and supports teens aged 12-17 to speak about TS and Tic Disorders with their local communities.

• February 26-27, 2021 & March 2-3, 2021: TAA Rising Leaders Training
  Applications for the next TAA Rising Leader training are due Sunday, January 10. Rising Leaders are a community of civically engaged volunteers, aged 18-25, working to educate their communities across the country on TS and Tic Disorders.

• March 3, 2021 at 8am-5pm EST: Virtual National Advocacy Day
  Join the TAA to advocate for the needs of the approximately one million people in the US living with TS or other Tic Disorders. The early bird registration rate is 25% off until January 7!

• March 4, 2021 at 3pm EST: Unleash Your Superpower! Why Students With TS Need an OT in Their Corner
  In this webinar, as part of the Occupational Therapist Webinar Series, participants will learn how to apply their expertise to assess underlying factors that are impeding progress and develop a team-oriented approach for success in school, home, and community.

• March 9, 2021 at 3pm EST: Identification and Management of ADHD and Impulse Control in TS
  This webinar, as part of the Provider Education Webinar Series, will define both disorders and explore best ways to manage them in children and adults with Tourette Syndrome.

• March 18, 2021 at 3pm EST: Success in the Educational Environment: It’s Not All About Grades
  The presenter in this webinar, as part of the Occupational Therapist Webinar Series, will detail numerous ways in which OTs should be involved within the educational arena.

• March 24, 2021 at 7pm EST: Classroom Strategies and Accommodations for Students with Tourette Syndrome
  This webinar, as part of the Education Professional Webinar Series, focuses on strategies for the classroom to assist a student with Tourette Syndrome.

• April 1, 2021 at 3pm EST: Case Vignettes, Applications and Resources for OTs
  The speakers in this webinar, as part of the Occupational Therapist Webinar Series, will bring a variety of case vignettes and review treatment goals for each context.

• April 8, 2021: Refractory Tourette Syndrome
  This case-based webinar, as part of the Provider Education Webinar Series, will explore courses of action for clinicians to consider when symptom treatments in TS do not respond sufficiently to usual approaches.

• April 21, 2021 at 7pm EST: Instructional Teaching Strategies to Support Students with TS and ADHD, Anxiety, and Executive Function Needs
  In this webinar, as part of the Education Professional Webinar Series, learn how ADHD, Anxiety, and Executive Function needs can impact learning and social skills in a classroom.

• May 13, 2021 at 3pm EST: Advances in the Treatment of Tics
  During this webinar, as part of the Provider Education Webinar Series, behavioral therapy, medication and Deep Brain Stimulation will be explored.

• May 14-16, 2021: 2021 National Conference
  National Conference is the largest national research and practice conference dedicated to TS. Attend presentations that enrich your knowledge of the condition, and connect with members of the TS community.

• May 15 - June 15, 2021: Miles for Tourette
  Save the Date! Lace up your shoes and join us throughout Tourette Syndrome Awareness Month to run, walk, or cycle wherever you are!

• May 19, 2021 at 7pm EST: Positive and Proactive Supports for Challenging Behaviors Associated With Tourette Syndrome and Co-Occurring Conditions
  This webinar, as part of the Education Professional Webinar Series, will provide successful philosophies and strategies that focus on positive and proactive supports for students with TS.

• June 6, 2021: National Awareness 5K Run/Walk
  Save the Date! Join the TAA for the National Awareness 5K Walk/Run at Astoria Park in New York City. This year's event features a Kids Fun Run and the 5K Run/Walk.

• June 16, 2021 at 7pm EST: Handwriting and TS: Common Issues that Impact Learning
  Participants in this webinar, as part of the Education Professional Webinar Series, will learn how the complexity of underlying issues can combine to create a barrier to written work production.

• June 28, 2021: Illinois Golf Classic and Ladies’ Game Day
  Save the Date! The annual Golf Outing and Ladies' Game Day is one of the largest fundraisers for the TAA and the support we receive from this event is vital.

• July 13, 2021 at 3pm EST: Transitioning to Adult Care: Time is Ticcing Away
  In this webinar, as part of the Provider Education Webinar Series, attendees will discuss the process of transitioning from pediatric to adult care.

Educational Professional Series recordings

Handwriting and TS: Common Issues That Impact Learning

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 

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.

To the Mom/Dad of the kid who has Tourette 

Tourette Podcast

Tourette Association of America Southern California Chapter 

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)

Resources and support

Find a local chapter

Centers for Disease Control and Prevention

Data and Statistics on Tourette Syndrome

 American Academy of Neurology

The Treatment of Tics in People with Tourette Syndrome and Chronic Tic Disorders

TicFit Workout Series

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