Aiden Genender is not shy. It’s an aspect of his personality that has served him well in many ways — he’s been part of the school plays and musicals at Pierson Middle School and High School, is a member of the Sag Harbor Community Rowing team, and the youth and government club — a YMCA program led by Town Councilman Tommy John Schiavoni, and attends A. Kazickas Lithuanian School in Riverhead every Saturday, among other pursuits.
Being a joiner, and outgoing by nature has also helped Aiden, 17, a junior at Pierson High School, navigate a diagnosis of Tourette Syndrome when he was just 7 — and it’s made him the perfect person to help other young people in the same position.
Last week, Aiden gave a special presentation to Pierson sixth graders, as part of the middle school’s PLANT (Preparing Learners for A New Tomorrow) class.
It marked the first time since the beginning of the pandemic that Aiden gave a live presentation about Tourette Syndrome and tic disorders in person, but speaking to crowds of varying ages and sizes is nothing new for him. Since 2019, Aiden has been a Tourette Syndrome Youth Ambassador, an opportunity that was presented after he and his family joined the Long Island Chapter of the Tourette Association of America. At the age of 14, Aiden was trained, through the association, to spread awareness and give presentations at various places, from schools and churches to police departments and hospitals, and even on Capitol Hill, advocating for federal support. Aiden and other TS youth ambassadors have done their presentations virtually since the pandemic began, and in the spring, Aiden began training other teens to become youth ambassadors as well.
In an interview last week, Aiden explained why becoming a youth ambassador was a natural fit for him, and why what he and other youth ambassadors for Tourette Syndrome do is more important than ever.
Tourette Syndrome (TS) is a neurodevelopmental disorder that becomes evident in early childhood or adolescence, and is part of a spectrum of tic disorders characterized by motor and vocal tics, according to Tourette.org. Tourette Syndrome and tic disorders are not uncommon; 1 out of every 160 children between the ages of 5 and 17 in the U.S. has TS, and 1 out of every 100 has TS or another Tic Disorder, according to the site. Some tic disorders go away over time, while others can persist into adulthood, and most children with TS or tic disorders have another co-occuring condition as well, such as ADHD, OCD, or anxiety.
“During COVID, I noticed a few kids developing tic disorders, just from things being so stressful, and I wanted to get the word out,” Aiden said in an interview over Zoom last week.
Tourette Syndrome is something most people have heard of, but don’t know much about. It has been portrayed harshly and often inaccurately in the media, played for laughs in films where characters with the condition are often shown cursing uncontrollably — an occasional feature of TS known as coprolalia, that only affects a small percentage of people with TS or tic disorders — which has contributed to stigma. More inclusive and nuanced conversations around mental health have helped address some of that damage, and Aiden is committed to doing his part to help, making the most of his natural inclination for speaking up.
“I also have ADHD, and my mind is always jumping from one thing to the next, so I don’t generally get too hung up on things,” he said, adding that he’s never been afraid to let people know he has Tourette’s, even using it as a conversation starter with strangers from time to time. “I remember being in Philly with my mom and her friends in a café and I started talking with this guy and told him out of the blue that I have Tourette’s.”
Aiden said he took the diagnosis in stride when he was 7, largely unencumbered by the worries that initially plagued his parents, Nicholas and Ginta Genender, instead embracing it as just another quality that makes him unique.
“To this day, almost 10 years later, I have maintained that exact same attitude,” he said. “Whenever someone asks questions like ‘What’s an interesting fact about you?’ or they ask me to describe myself, I proudly mention my Tourette Syndrome alongside the facts that I am a guitar player, an actor, an avid reader, a massive nerd with a huge love of science, and a passionate debater.
“I don’t try to hide my Tourette’s,” he continued. “I try to educate others about it. I try to show people that those of us with Tourette Syndrome, we’re not different from anyone else, we just have a small oddity about ourselves that we cannot control.”
Aiden said he understands that not all children and teens can take the same approach, but he’s hoping to lead by example and reduce some of the shame and stigma associated with the condition, and eliminate any bullying that children with Tourette Syndrome may experience. Raising awareness about Tourette Syndrome and other tic disorders is also key, he said, because the conditions are often misdiagnosed, misunderstood, or unrecognized. Being under uncommon or acute stress can also lead to tic disorders, so it’s no surprise that Aiden has noticed several peers develop tics over the past year of remote learning and unexpected isolation. Aiden’s mother said she’s had several local families reach out to her for more information about how to support their children who have developed tic disorders recently.
Serving as an ambassador has been a rewarding experience, Aiden said. He’s received feedback from parents of children with TS, thanking him and letting him know his words and presentations helped their children. It’s been an enriching for him personally, in his own ongoing journey of life with Tourette’s.
“I like to learn, and I’ve learned a lot about TS that I didn’t even know,” he said. “And it’s helped me with public speaking. That was never a big issue for me, because I’ve never been that kid to be quiet in class; I’m always talking and being loud. But it helped me be more fluid and precise with what I want to say and with getting my point across.”
Aiden said he encourages children and teens and their families to seek out support and community if they receive a diagnosis of Tourette Syndrome or a tic disorder, and he added he’s always there to be part of that community.
“I’m in a support group that meets once a month, so I usually direct people to that,” he said. “You can learn more about TS, or if you suspect you might have Tourette’s or a tic disorder, it helps to hear people say, hey, you’re not alone. We’re all here for you.”