Youth, doctors and Tourette Association urge June 7 designation to reduce stigma and speed diagnosis

Youth ambassadors, clinicians and advocates asked the Joint Committee on State Administration and Regulatory Oversight to designate June 7 as Tourette Syndrome Awareness Day in Massachusetts.

Owen Rosenthal, a high‑school student and youth ambassador for the Tourette Association of America, told the committee he was diagnosed six years after symptoms began and that tics often go unrecognized: “In a 1 hour period, it might tic upwards of 200 times,” he said in testimony, describing the physical toll and exhaustion he experienced before treatment. Clinicians at Massachusetts General Hospital and the Tourette Association presented data the committee requested to show underdiagnosis and the common co‑occurrence of anxiety, ADHD and OCD with tic disorders.

Speakers said greater public awareness would shorten delays to diagnosis and connect families to treatment, special‑education services and behavioral therapies. Amanda Talty, president and CEO of the Tourette Association of America, summarized prevalence estimates cited by the Centers for Disease Control and Prevention and the association’s own surveys, saying the condition is often misunderstood and that “only about 50 percent of those affected have received a formal diagnosis.”

Medical witnesses said the condition is frequently mischaracterized in media coverage and that most people with Tourette do not display the rare symptom of coprolalia (involuntary swearing). They urged that the day be used to educate teachers and health providers so students can receive accommodations and earlier intervention. The committee invited submission of written testimony and national expert statements to the hearing record.

Committee members asked witnesses to provide electronic copies of written testimony and follow‑up contacts for clinical experts; the hearing did not include a vote on the proclamation bills during the session.