Tourette Tyler Childers

Tyler Childers talks Tuesday about being named as a youth ambassador for the Tourette Association of America.

LARRY MAYER/Gazette Staff

This school year is Tyler Childers' first in public school, and before his first day, the Castle Rock Middle School eighth-grader made a plan for how he'd introduce himself to new people.

"I went in with the idea that when I meet somebody, I tell them, 'Look, I have Tourette syndrome, so if I'm doing something weird, that's why, and it's not big deal,'" he said.

That strategy has worked for the Billings 14-year-old, who is working to spread awareness of the condition and hopes to help form a local support group for others diagnosed with the condition.

And that attitude and effort has also earned him a place in the Tourette Association of America's Youth Ambassador Program and a trip to Washington, D.C., this month. He'll meet with members of Congress regarding Tourette and learn how to better advocate for policy, resources and awareness in the community.

"The youth program is a very, very important program," said Dr. Kevin McNaught, executive vice president of research and medical programs for the Tourette Association of America. "It has over the years done so much to improve education, advocacy and awareness for Tourette syndrome in communities. We think that having young people who have the disorder advocating for the disorder is of tremendous value and importance."

Tourette is a neurological disorder that sets in during childhood and is characterized by involuntary tics, including movements in the face, arms or body, and sudden vocalizations such as humming, clearing the throat, or shouting a word or phrase.

As with many others, Tourette started to show up with Tyler early on, first in the form of erratic blinking that his parents initially thought was a vision problem.

"It turned out I did need glasses, but that didn't fix the problem," he said.

The blinking continued and, when he was 9, Tyler visited a Billings neurologist. As more tics began to manifest, he was diagnosed with Tourette.

At first, he didn't understand what that meant, only hearing what sounded like a scary condition.

"When they told me, I thought I was going to die," Tyler said.

Since then, he's traveled to the Denver Children's Hospital to work with specialists and receive medication to help.

Over the years, Tyler has developed a number of tics, including popping his jaw, sticking out his tongue, hand gestures, facial gestures and vocalizations, all of them involuntary.

"He's got about two dozen tics that he cycles through," said his mother, Amie Childers. "We'll see three to six at a time."

3 in 1,000

There is no known cure for Tourette, and its cause remains a mystery, although researchers note that it appears the associated genes are passed down in families.

McNaught said that there's a public misunderstanding that it's a rare disorder. A U.S. Centers for Disease Control and Prevention study indicates that about three out of 1,000 school-aged children have Tourette, while around a quarter of children might have some form of a tic in childhood.

Even with that prevalence, it's something that is often misunderstood among the general public, which both McNaught and Tyler said is most familiar with the rare cases in which somebody with Tourette has loud, sudden outbursts of screaming or cussing.

"Tourette isn't a cursing disease," Tyler said. "Actually, it's not a disease at all. It's a neurological disorder that affects everyone differently. People might see it as screaming and cussing, but that's not what it is for most people."

Tourette often comes with co-occuring conditions such as ADHD, obsessive compulsive disorder, anxiety or depression. 

McNaught said that treatment options include medications — which can have severe side effects so strong that some patients opt to leave them alone — but that much effort is now being put into therapy treatments.

"What we have seen in the past five years is that there is more and more emphasis on non-drug treatments, meaning behavioral therapies," he said. "What I expect we will see is that we will see other behavioral treatments."

'Part of who I am'

Tyler, who sees a counselor and psychologist, said that he's come to learn how to approach his Tourette with other people, but that it's taken him a while and he's just getting comfortable with it.

"I was a wallflower," he said. "I wasn't what you'd call a social butterfly, per se."

But he also said that his peers at school have mostly been accepting and understanding, even if he has to go into greater explanation sometimes of what exactly Tourette is.

All of his friends have reacted positively.

"They're like, 'It's just what it is, dude,'" Tyler said. "It's not like it's something that defines me. It's a big part of who I am, but it doesn't define me."

He's an avid hockey player as a member of the Junior Bulls and likes to skateboard and hang out with his friends. Like most other teens his age, he's quick to laugh at a joke and chuckles at himself if he stumbles over a word.

Changing perception

While those around him might have a better understanding, Tyler also wants to spread that awareness into the community.

He hasn't been able to find a local Tourette support group, so he started a Facebook page called Tyler Childers MT Twitch that he hopes others with Tourette will use as a gathering place.

"I hope at least one support group will form," he said.

An important step in his effort will be the trip to Washington for the Youth Ambassador Program. During the March 8-13 trip he'll join other teens from across the country to learn more ways to present the issue within the community and present the case to lawmakers to increase funding for more Tourette research.

Tyler first got involved at the urging of his psychologist, who turned him on to the program about two years ago. He is now working to raise the rest of the money needed through a GoFundMe page so he and his mother can make the trip.

The Tourette Association of America is a nonprofit group that works to raise awareness for the disorder while also gathering funds for research and providing educational and advocacy resources.

Members will be in Washington along the youth ambassadors for National Advocacy Day with the same goals as the youth.

"What we see is that for people with Tourette, they don't think there is enough support from the federal government," McNaught said. "Changing perception, increasing awareness among professionals, will help to highlight the difficulties."

While research is continuing and a recent global summit on the disorder drew more than 400 research scientists and experts to share their latest findings, there are still so many unknowns about Tourette that continued development is a priority for the association.

"My hope is that in the next few years we will be able to get a much better understanding," McNaught said. "Almost every time a research study is conducted, we learn so much more about this that we really do not understand. There is so much more that we do not understand. That is why our association has a very robust research program."

When Tyler returns from the Youth Ambassador Program, he plans to speak to local schools, businesses and other groups to share more information.

"I'm just trying to make it better understood," he said.