Johnston student serves as Rhode Island’s Youth Ambassador for the Tourette Association of America
This story originally was published in the Warwick Beacon, a publication partner of Ocean State Stories. Rory Schuler, editor of the Johnston Sun Rise, wrote it.
Mark-Anthony Thompson loves to play Fortnite, like most modern day teens.
Some evenings you can hear him warning fellow players to watch out for snipers, legendary back bling and the impending storm (if you know, you know).
While interacting with friends online however, the other youngsters have usually been warned in advance that Mark-Anthony may involuntarily let out a few non PG-13 zingers while gaming.
He’s a passionate player, but the outbursts have little to do with the game. The profane outbursts are a sign of the neurodevelopmental disorder with which he lives daily, Tourette Syndrome (TS). And without educating those around him on a regular basis, the condition could feasibly threaten his every interaction.
Mark-Anthony Thompson begins each fall semester the same way.
“Every new school year I explain to my new class that I suffer from Tourettes with a few explanations of my tics,” explained the 13-year-old Ferri Middle School eighth grader.
The Signs
Thompson described the signs of his neurodevelopmental disorder, beginning with the coprolalia.
“I cannot control outbursts of inappropriate language,” he said, adding that the symptom is fairly rare, experienced by only around one in 10 people who have Tourette syndrome.
“I also let them know that while there are times they can seem harmful or intentional it is however the exact opposite and out of my control that it is not a joke,” Thompson said. “I also let others know when my family and I are eating out or I am playing Fortnite.”
Middle school can be tough for any kid. Living with Tourette syndrome can add just a bit more challenge to a young student’s daily routine.
Thompson has found one way to fight the symptoms — by fighting the stigma and fighting for awareness. He recently took a trip to the nation’s capital to advocate for awareness, and to rally for other kids his age who live with the neurodevelopmental disorder.
“There is always an opportunity to educate others and that is the best part,” Thompson said. “I am also walking in the Team Tourettes National Awareness Walk/Run this June in Wilbraham, Massachusetts. I will continue to work as a Youth Ambassador and help increase awareness.”
Thompson represented the Ocean State as “Youth Ambassador for the Tourette Association of America,” according to his mother, Deloris M. Thompson.
Her son used his voice to call for continued support of the Safe Step Act, which provides funding for TS research. Thompson has also called for both increased awareness of Tourette, and training in schools.
Thompson met with members of the Rhode Island delegation in Washington D.C., including Sen. Jack Reed (he spoke to the staff members for Rhode Island’s two Congressmen).
“He was also able to meet over 200 other kids and adults suffering from Tourette’s as well,” she recalled.
Tough Questions
Deloris Thompson was asked how the disorder reveals itself. She said that was “a hard question to answer because his tics are always changing.”
“Things like the environment, stress from school, starting a new school year, people staring at him because he is suffering from a tic, and eating out with family could generate a tic that wasn’t previously noticed,” she explained. “His tics are less at the beginning of the summer. They tend to increase the closer we are to the beginning of the school year. They can be anything from swearing, twitching, jumping, speaking in a loud voice or saying inappropriate things.”
According to the Tourette Association of America (TAA), “Tourette Syndrome is a neurodevelopmental disorder that affects children, adolescents and adults. The condition is characterized by sudden, involuntary movements and/or sounds called tics. Tics can range from mild/inconsequential to moderate and severe, and are disabling in some cases.”
The national organization explains that while “tics occur in as many as 1 in 5 school-aged children at some time” they “may not persist.”
“TS and other Tic Disorders combined are estimated to occur in more than 1 in 50 school-aged children in the United States,” according to the TAA. “TS occurs in 1 in 160 (0.6%) school-aged children, although it is estimated that 50% are going undiagnosed. The reported prevalence for those who have been diagnosed with Tourette is lower than the true number, most likely because tics often go unrecognized. TS affects all races, ethnic groups and ages, but is 3-4 times more common in boys than in girls. There are no reliable prevalence estimates of TS and other Tic Disorders in adults. However, they are expected to be much lower than in children as tics tend to decline into late adolescence.”
Deloris Thompson feels she may be doing something right, raising a young advocate who’s unafraid of expressing himself.
“There are not enough words to explain how proud we are of Mark-Anthony for advocating for Tourettes Syndrome both in front of members of Congress and their staff or the general public,” she said. “When he was diagnosed at the age of five we were left with more questions than answers. He suffers from severe motor and vocal tics as well as ADHD, OCD, and high anxiety. We were referred to a child neurologist Dr. Maria Younes; she helped us understand and find the right medications.”
A Little Help
Dr. Younes also introduced the Thompson family to the TAA, “an organization that has helped us educate others.”
“His tics have never stopped him from making friends, doing what he loves and standing up for others even on a bad day,” declared the proud mom.
As for her advocating teenager, he says he “loved serving as Rhode Island’s Youth Ambassador.”
“I was introduced to new people and never felt so relatable with other kids and some adults too,” Mark-Anthony Thompson recalled. “It felt great not having to hold back with my tics and just being me. The Youth Ambassador training has also helped me understand how to respond to challenging questions. Not everyone knows about Tourettes and that is okay; it’s up to the Ambassadors to educate them.”
The youngster said the best part of the trip was meeting “Sen. Jack Reed and being able to share my story and be a voice for others personally.”
“We also went sightseeing and ate at some cool restaurants,” he said, adding one last message he hopes will resonate with readers. “I would like people to know that others suffer from the same types of tics as me. Tourettes isn’t a joke and we are not looking for attention. It is something that is completely out of our control. Staring at someone suffering from a tic or telling them to stop will only increase the amount of tics. People can help by donating … Overall, I love doing this and I hope to have more adventures and opportunities in the future.”
DONATE HERE
According to Mark-Anthony Thompson, people can help by donating to the cause: https://www.givegab.com/p2p/nationalwalk/mark-anthony-thompson
