Ardsley High School rising senior Alexandra Cuttler, a Tourette Youth Ambassador, gave a presentation about the much-misunderstood neurodevelopmental disorder to the Greenburgh Town Board on June 23.
Cuttler, whose family is involved with the New York–Hudson Valley Chapter of the Tourette Association of America, received national media attention in 2019 when her idea to raise awareness of the syndrome became a reality. That year, for the first time, the Mario M. Cuomo Bridge was lit up in teal on June 15, the final day of Tourette Awareness Month.
Cuttler, 17, who was diagnosed with Tourette syndrome at 12, dispelled myths about the disorder, which manifests itself in tics — involuntary noises or repetitive actions — and related some of her personal experience.
“Imagine trying to hold in a sneeze,” she explained to the board. Cuttler’s tics caused her to make a screeching sound and were so severe that they caused her rib cage to collapse around her lungs. The pressure resulted in breathing problems and dislodged her inner ear crystals, “which caused balance issues and many ankle sprains.”
Cuttler talked about multiple misdiagnoses, and medications that had no impact until a team of specialists created the appropriate treatment plan. She’s now “in a better place, back in school, learning to drive, hanging out with friends. I am an all-around-normal teenager,” Cuttler said.
Under the Americans with Disabilities Act, those with Tourette are protected, “but that doesn’t mean they are treated with the same respect and courtesy as everyone else,” Cuttler informed the board. “There are always challenges with being accepted by others, and this can cause isolation and depression. There were times when I was bullied by random strangers on the street because they didn’t understand my tic.”
Cuttler shared the painful memory of an incident that occurred in a parking lot, when a woman called her a “retard.” She understands that the woman was uneducated; she and her mother, who was with her at the time, turned that encounter into a teachable moment. “My goal is to educate and to erase the stigma associated with Tourette so that others don’t have the same experience that I did,” she stated.
Cuttler has made half a dozen public presentations to date, and expects to do more. “My goal is to foster awareness and social acceptance, and teach others not only to stand up for themselves, but to embrace who they are, even with their diagnosis.”
She offered surprising statistics: In the U.S., one in 160 school-age children (one in 100 children overall) is affected by a tic disorder. Tourette usually begins in childhood or adolescence, and sometimes occurs with co-disorders.
“If one person benefits from learning about Tourette or is helped to find the right diagnosis, then we [Jack Carlin of Mamaroneck is another Ambassador] can consider our mission successful,” Cuttler said.
In a conversation with the Enterprise on July 6, Cuttler recounted that she and her family — parents Christine Brykowytch and Kevin Cuttler, and sister Stefania, 15, an AHS rising sophomore — were driving over the bridge when the idea struck for lighting it teal. The “Project Lights” initiative will now be an annual event, and Gov. Andrew Cuomo issued a proclamation declaring New York’s support for Tourette Syndrome Awareness Month.
Cuttler provided more details about living with Tourette. The symptoms wax and wane, she said. Initially, she missed a lot of school while her parents searched for the right care. An avid swimmer, Cuttler had to stop for a while because it was difficult to stay in the water while her tics were uncontrolled. She plans to join the AHS swim team this fall.
Her sense of humor emerged as she described her vocal tics: “Sometimes I sound like a banshee or an ambulance; I would have dogs barking back at me. I sounded like a dolphin for a couple of weeks, or a hummingbird, every minute, on the minute, with different tics in between; it was ridiculous; you could tell time by me.”
She continued, “Late at night when I couldn’t get to sleep, I would count them, to distract myself. I think 9 seconds was my record. You know the street signs that make sounds to help the visually impaired to cross? I would tic in time with them. It was no fun, but it was kind of fascinating to see what the human body could do.”
Cuttler noted that her disorder isn’t gone. “It’s not that I’m symptom-free,” she said. “More that my tics are managed with the right therapies and the right medications, and I’m in a good place where I don’t have to deal with my tics being as prominent, except if I get too emotional. I can’t even get too happy or too tired.” She added, “It’s led to knowing myself a lot better than I used to.”
She’s also acting as mentor, teacher, friend, support, and resource for a younger girl who is learning to cope with Tourette and advocate for herself.
Cuttler has become a model of activism. At the June 2019 Vote Like a Girl event co-hosted by Historic Hudson Valley and the League of Women Voters at the landmark Sunnyside estate in Irvington, she approached Sens. Andrea Stewart-Cousins and Shelley Mayer about lighting the bridge. They advised her how to send her request to Cuomo so that he’d see it, and, backed by the Tourette Association’s local chapter, Cuttler campaigned.
“I faxed, wrote, emailed — I think I kind of bombarded him,” Cuttler admitted. She and Carlin gave their presentations to their town boards, which issued proclamations. The senators and the Thruway Authority backed the campaign, Cuomo issued his proclamation, and the bridge turned teal.
Planning a career in special education law, Cutler explained that she wants “to look out for people, especially kids, and make sure they have the help and care they need so they’re provided with the right tools for a bright future.”
Cuttler’s message to the public is simple: “We’re just like everyone else. We’re ordinary people. We’re just like you except we might make some movements or sounds.” She suggested that if people find those behaviors irritating, “imagine living with it.”
She added, “We also tell people not to be afraid of us, because some of them don’t understand that it’s a neurological disorder and we can’t control it.”
The Tourette Association has provided their Ambassadors with an unusual sort of business card to give someone who’s reacting negatively to a person displaying a tic. The cards say, “I’m sorry if it annoys you; it annoys me more.”