Tourette Awareness Month

Tourette Syndrome Awareness Month is nationally recognized from May 15th to June 15th each year. It is organized by the Tourette Association of America (TAA), which advocates for raising awareness, self-acceptance, community resources, and disability rights for those with Tourette’s syndrome and tic disorders. 

Many events occur during Tourette Syndrome Awareness Month, so taking part can help you raise awareness and learn more about Tourette’s syndrome, whether you are diagnosed, know someone who is, or are interested in supporting the cause as an advocate. 

Tourette Awareness Month Events And Ways To Celebrate 

The Tourette Association of America holds several events each May through June and advocates for the celebration of Tourette syndrome awareness month. Below are a few events you can attend and ways to get involved and celebrate advocacy and awareness. 

National Awareness Five-K Walk & Run 

The Team Tourette Awareness Walk & Run occurs each year in June. In 2023, the National Awareness five-kilometer event will occur on June 11th at Astoria Park in Queens, NY. You can also attend the organization’s 2023 Disney Princess Half Marathon Weekend and run with Tourette Association of America at the 2023 NYC Marathon in November to raise $35,000 in funds for Tourette syndrome awareness. 

Virtual registration is also available for the five-k. To participate, sign up and run, walk, or bike anywhere in your community. Make it fun by wearing face paint or colorful socks, and after partaking in the run, take a picture and make a post online, tagging it with #MilesforTourette. 

Wear Tourette Awareness Merchandise

Tourette Association of America offers Tourette awareness merchandise and “swag” as a creative way to spread awareness and raise funds for the Tourette community. The money spent on the items purchased goes toward Awareness Month, further Tourette research, and community support. You can also wear teal nail polish, ties, or clothing for Teal Tuesdays or buy a teal Tourette syndrome ribbon to showcase your advocacy.  

Attend TIC-CON Or The TAA National Conference In 2023

On May 19th and 20th of 2023, Tourette Association of America will hold a virtual TIC-CON, involving talks on upcoming research. You can also attend their National Conference, which is held each year. 

On May 19th, you can learn about innovations, inventions, and studies on tic disorders and potential new treatment landmarks. On May 20th, there will be programming for children and teens experiencing Tourette Syndrome and an educational conference for parents and families to connect and learn. Register to secure your spot.

Send A Letter To Congress

Tourette Association of America suggests sending letters to your congressional leaders to support advocacy for Tourette-friendly policies and disability rights. You can personalize your message or send a pre-written email through their public policy portal to contact your representatives. 

Donate To TAA 

Donating to the Tourette Association of America (TAA) can help their expert advocates continue the movement to support the community and fund research to find a cure. 

Destigmatizing Tourette Syndrome: What Is It?

Understanding Tourette syndrome and how it can look may aid in the destigmatization and bring awareness to symptoms and diagnosis. 

Tourette syndrome (TS) is a nervous system condition characterized by involuntary muscle movements, actions, or verbal sounds and speech. Often, this condition is chronic, and patients cannot stop themselves from their tics, which can cause distress and embarrassment in daily life. Tourette syndrome is one of three tic disorders. 

Tics might include simple or complex movements or vocal sounds. Simple tics involve one part of the body, like the head or shoulders, or quick sounds. For example, winking or hissing might be simple tics. Complex tics can involve multiple movements or complex sounds, like throwing an item while jumping or singing a portion of a song. 

Often, Tourette syndrome and tic disorders begin around five to ten years of age. However, teens may rarely begin to see symptoms at an older age. For some, tics can go away in adulthood. For others, they may worsen or stay the same. 

Tourette is not a fun or “quirky” condition. It can cause real distress and stigma for those experiencing it. In addition, the media portrayal of TS may not be accurate in every case. Although people might act out aggressively or shout at times, Tourette syndrome can also include a variety of tics that are unique to each person. 

How To Find A Diagnosis

If you suspect you or your child is experiencing Tourette syndrome or has any co-occuring conditions, reach out to your primary care physician. They may be able to offer a referral to a neurologist for testing. To diagnose the condition, your doctor will ensure the tics first occurred before age 18 and were not caused by medications or other medical conditions. They may also do neuroimaging to rule out other neurological disorders, including an MRI or CT scan.   

Treatment Options

There is no official treatment for Tourette syndrome, but symptoms can be manageable through several studied interventions and efforts. For example, some doctors may refer you or your child to a psychiatrist to be prescribed medication or a therapist to partake in mental health counseling. Both options can be effective.   

Tourette Syndrome Statistics

Below are a few additional Tourette statistics: 

• Researchers believe at least 50% of children with Tourette syndrome may go undiagnosed.
• In 2020, the U.S. Census estimated that up to 450,000 U.S. children and adults lived with Tourette syndrome, and over one million were diagnosed with a tic disorder.  
• Many people experience the most distressing symptoms of Tourette syndrome as teens and experience relief as adults, with some recovering from the condition. 
• Many conditions are often comorbid with TS, including anxiety, attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and obsessive-compulsive disorder (OCD).  

If you’re looking for further information, you can check for future research and statistics at the UF Health Fixel Institute website. 

How To Spread Community Awareness

Anyone can join in and make a difference by spreading awareness for Tourette syndrome in their community, regardless of diagnosis or reasoning. The more people are educated about the condition, the more stigmas may be reduced for those experiencing it. 

Although Tourette syndrome is a childhood disorder, symptoms might not disappear in adulthood. Many children and teens diagnosed with TS become adults living with TS. Advocating for adult resources as well as family resources can ensure all individuals are seen and heard. 

Organize An Event Or Fundraiser

If there are no Tourette Syndrome Awareness Month events in your community, consider spearheading one. You can look for local chapters and support groups of the Tourette Association of America in all 50 states. If you find a local chapter, ask them how you can support them in fundraising or starting an event. You can also contact TAA directly to ask how to start your own support group in your city or state. 

Some families might choose to organize an awareness event at their child’s school, such as a bake sale, community sale, or art fair. Talk to your child’s school’s PTA board or administration to learn more about educating the student body on Tourette syndrome or celebrating Tourette Syndrome Awareness Month this year. 

Submit Your Story 

My Tourette is a platform developed by Tourette Association of America to help families and individuals with Tourette syndrome tell their stories and read or watch the stories of others. Sharing stories can help inspire others and help families and those living with Tourette syndrome feel supported and understood. You can submit your story and upload an image or video through the My Tourette portal.

Stand Up Against Bullying 

Bullying may occur for children and teens experiencing Tourette syndrome due to the outward nature of the condition. Education in schools and the community may address these concerns, but bullying prevention resources can also be beneficial. Tourette Association of America recommends the following strategies for parents: 

• Discussing your child’s accommodations with the school; 
• Organizing an educational speech with an expert guest for students to learn more; 
• Finding an adult at school that your child can talk to if they experience bullying; 
• Setting up an intervention plan with your child’s school counselor and educational team;
• Meeting with the school board and PTA to discuss Tourette syndrome and bullying statistics;
• Encouraging a diversity week or disability education week at your child’s school; 
• Providing your child with anti-bullying resources, such as the ones available on StopBullying.gov; 
• Enrolling your child in therapy. 

Counseling Options For Those With Tourette Syndrome And Their Loved Ones

Various forms of therapy are available to help individuals manage symptoms of Tourette syndrome. For example, comprehensive behavioral intervention for tics (CBIT), cognitive-behavioral therapy (CBT), and exposure and response prevention (ERP) can all have benefits. However, if you’re struggling to find a provider in your area that is knowledgeable in TS or face barriers to treatment such as social anxiety, fear of bullying, or cost of treatment, there are other options. 

Online therapy can be beneficial for adults and teens with Tourette syndrome because it can allow for a discreet form of symptom management. Through online platforms like BetterHelp for adults (over 18) and TeenCounseling for teens aged 13 to 19, you can choose between phone, video, or live chat sessions with your therapist and get matched with a licensed therapist experienced in your symptoms or diagnosis. 

In addition, studies have found that remote internet-based interventions are as effective as face-to-face therapy in treating tics and co-occurring mental health conditions in teens with Tourette syndrome. Once you sign up for a platform, you can get matched with a therapist in as little as 48 hours .