By Amanda Boston
For decades, mainstream media has unfairly characterized Tourette Syndrome as the ‘cursing disorder’ where individuals involuntarily blurt out obscenities. While outbursts of inappropriate words can be a symptom, it only affects 10% of those with Tourette Syndrome.
So, what is Tourette Syndrome? The Tourette Association of America (TAA) defines it as a neurodevelopmental disorder characterized by sudden involuntary motor and vocal tics. TAA estimates that 1 out of every 160 children between the ages of 5-17 living in the United States has Tourette Syndrome.
Founded in 1972, TAA is a nonprofit agency advocating for individuals affected by Tourette and Tic Disorders. State-led chapters under the auspices of the national organization provide local support. Christopher Brown, the chairperson for the TAA Florida Chapter, said, “We focus on advocacy, awareness and support for our families.
We have the Family Weekend in Brandon and other events around the state.”
In February, the TAA Florida Chapter holds its annual Family Weekend event at the Rotary’s Camp in Brandon. Families across Florida can connect with other families who are dealing with similar issues. The weekend camp offers mini-conferences on topics like navigating a 504 Plan, an IEP, and other educational matters.
The TAA Florida Chapter also oversees support groups—both in person and online. Denise Graf, a Lithia resident and mother of an adolescent with Tourette Syndrome, recently discovered the Tourette Association of Florida Facebook group.
“The group has not only provided emotional support and insightful information but has also given us the opportunity to provide support with what we’ve learned along our journey,” said Graf.
Graf also mentioned that the start of the school year often brings increased stress to students with Tourette Syndrome. She explained, “It’s a tough time for families as they grow concerned about how their child could become a target of bullying since the symptoms make them ‘different’—causing them to draw attention to themselves.”
With the hope to remove stereotypes, TAA initiated a program called Youth Ambassadors. The program trains adolescents with Tourette and Tic Disorders to address and educate elected officials, peers, and schools about the disorder. The goal is to shed some light to this frequently misunderstood disorder.
For more information on TAA and Tourette Syndrome, visit www.tourette.org. To find local events or a support group, visit the TAA Florida Chapter website at www.tsa-fl.org. The TAA Florida Facebook support group can be found on Facebook at Tourette Association Florida.
