VCU grad student William Atkins IV brings awareness to Tourette syndrome

Ben Martindale, Contributing Writer

Leaving home and attending college can be a challenge for anyone — add a Tourette syndrome diagnosis into the equation, and everything gets even harder. 

For VCU graduate student William Atkins IV, the difficulties of living with Tourette syndrome is not something to complain about; it is just life.

“The best way I can describe it is you wake up in the morning and an invisible backpack gets strapped to my back and I go through all day with the backpack on,” Atkins said.

Tourette syndrome is now a central part of Atkins’ identity, but it was not always that way. Atkins was not officially diagnosed with Tourette syndrome until he was 16 years old.

Tourette syndrome is a neurological disorder that causes sudden, unwanted and uncontrolled rapid and repeated movements or vocal sounds called tics, according to the National Institute of Health. In the media, that is usually represented by loud, uncontrolled swearing, but that is not always accurate in real life.

“It’s the number one thing people ask me,” Atkins said. “‘Do you curse?’ ‘No, I don’t curse. That’s called coprolalia.’”

Misconceptions about Tourette syndrome are a prominent part of living with the syndrome, even among medical professionals.

Brad Cohen, an award-winning teacher and founder of the Brad Cohen Tourette’s Foundation, said he has seen misconceptions and misdiagnoses throughout his career as an advocate.

“It depends on where you grow up, a lot of times doctors have some knowledge of Tourette’s, but if they’ve never diagnosed a kid with Tourette’s, it could go misdiagnosed,” Cohen said. “A lot of times when kids are growing up, they see it as a behavioral problem and not as a neurological disorder.”

The struggles of living with Tourette syndrome go far deeper than just the tics themselves — for Atkins, it also means facing physical challenges that people often do not associate with the syndrome.

“From the moment I wake up in the morning to the moment I fall asleep, my body is ticking,” Atkins said. “That’s a lot on the body.”

Instead of shying away from the challenges of Tourette’s, Atkins has embraced them and begun using his voice to advocate for others like him.

“I didn’t want to make my whole personality about me having Tourette’s, but then I also realized that me not mentioning it was a problem as well. It felt like I was leaving a key part of myself out,” Atkins said. “I’ve had encounters where people look at me like I’m an alien because they don’t understand what’s going on. Nothing is going on, I’m a regular person, I just have a medical condition.”

Atkins has taken to social media to raise awareness for Tourette syndrome. His posts are used as a way of expressing his unique brand of individuality and also helping others see that they are not alone. In being himself, Atkins said he hopes he can encourage others to be comfortable in their own skin.

“When I was 16, I spoke in front of Congress to raise money for Tourette’s awareness, so I got to meet a whole bunch of other people with Tourette’s,” Atkins said. “I was the only Black man in the room; the rest were all white people. Nothing wrong with that, but it just made me realize Tourette’s isn’t common for people like me.”

While Atkins has not transitioned to his role as an influencer full-time, he is already having an impact on others in the community.

“Sometimes parents will message me and tell me, ‘Oh my gosh, my son is seven and he has Tourette’s, he loves your videos!’” Atkins said. “And that makes me happy.”

For now, Atkins is focused on his studies and advocating for people with Tourette syndrome in whatever ways he can, but said his goal in the future is to open a foundation for children with disabilities.

“I want to create a space for kids where they are celebrated, cared for,” Atkins said. “I think children who are oftentimes mocked, teased and bullied because they’re not ‘normal’ should feel comfortable in their own skin.”

Despite the challenges Atkins has faced on his personal journey, he remains incredibly optimistic for the future.

“I just want to live a long, happy, healthy, prosperous life,” Atkins said. “Just try to live a good life in your own shoes. That should be the end goal, no matter what you have or don’t have, disability or no disability, that’s it.”