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I have Tourette syndrome. It took me 20 years to get a diagnosis.

Alton Northup   

I have Tourette syndrome. It took me 20 years to get a diagnosis.
  • I started having tics when I was 7 years old.
  • At first, doctors dismissed my mom's concerns as me just being a kid.

I’m sitting in a chair across from my psychologist. Two cameras point at me, and a white noise machine runs outside the door. I’m not supposed to move.

Keeping my neck tight and my chin tucked, there’s a wave of pressure building inside me. It’s consuming, and my neck starts to tremble.

Then, my neck turns to the left.

“Let’s try it again,” my psychologist says, correcting my mistake.

“It feels like I can’t breathe,” I tell him.

“It’s because you kind of can’t,” he says.

Just a week prior, my psychologist diagnosed me with Tourette syndrome, a neurodevelopmental disorder that causes involuntary movements and vocalizations known as tics. This is my first session of comprehensive behavioral intervention for tics (CBIT), the first-line treatment for the disorder.

My tics started when I was a kid

I started having tics around the age of 7. A nose twitch was the first to arrive, followed by finger popping and eyeball crossing.

After a family vacation to Boston, where I broke into tears when I noticed stares on the subway, my mother took me to a doctor. His diagnosis was that I was just a kid.

Tourette syndrome is classified as the most complex tic disorder in the DSM-5-TR, a publication by the American Psychiatric Association that serves as a guidebook for psychiatric diagnoses. However, it is relatively simple to diagnose. No specific test, blood paneling, or imaging is needed, only the presence of multiple motor tics and at least one vocal tic for more than a year with onset before the age of 18.

Despite these criteria, about half of children with Tourette syndrome go undiagnosed, according to the CDC.

While it is true that some children develop tics that eventually disappear, my tics never went away.

I tried hiding my tics

In the following years, I added more to my repertoire — an unimpressive ensemble of neck cracking, throat clearing, arm flexing, and lip-smacking that succeeded only in annoying those around me and increasing my discomfort.

Relatives warned me my face would get stuck, pleaded with me to stop clearing my throat and one friend gifted me tissues on my birthday because of my sniffing.

Without any explanation for my tics, I felt like I needed to hide them. Allergies became my excuse for sniffing, and I took over-the-counter pills that did nothing to stop them; nose twitching was an itch I had to scratch; neck cracking was a stretch. For every tic, I had an excuse on hand.

Until I didn’t.

Stress and anxiety can often make symptoms of Tourette syndrome worse, and college brought on a level of stress I hadn’t felt before. Walking down hallways, my arms would shoot out from my body. While writing, my wrists would bend inward. And my neck no longer knew how to stay still.

My tics interfered with my life

As my tics increasingly interfered with my daily routine and garnered the attention of peers, I decided to search for an answer. But after contacting over a dozen doctors, neurologists, and therapists — some of whom were waitlisted for more than a year — I failed to find a provider.

It would be another year until I was matched with my psychologist, just weeks before my 21st birthday. After receiving my diagnosis, I immediately started weekly CBIT sessions.

While the cause of Tourette syndrome is not fully understood, there is an observed difference in the basal ganglia, a key part of the network of brain cells that control voluntary movements. Throughout the day, the basal ganglia send signals for our bodies to react to our environment. Most adults can inhibit that signal, but people with Tourette syndrome cannot.

CBIT is a way of exercising the ability to inhibit those signals. By developing a competing response that makes a tic impossible to do, such as tightening my neck and lowering my chin for my neck turning tic, the tic can be minimized or replaced altogether.

Like all therapy, CBIT isn’t easy. I had to familiarize myself with the urges I felt before my tics happened, tightness in the back of my neck in the case of my neck turning tic, and disrupt the tic with my competing response before it could follow through.

Sitting in classes, taking quizzes or listening to lectures, I tracked my urges and contorted my muscles accordingly. The first weeks were a balancing act of catching my tics and implementing my competing responses until it became a habit.

While Tourette syndrome can’t be cured, my goal was to have more control over my tics in situations where I found myself struggling, such as during an exam or meeting new people. Before starting CBIT, I recorded my neck turning tic 26 times in just 30 minutes. After my first week, I was able to bring that number down to zero.

For many, CBIT is life-changing. But my diagnosis came with more than just access to treatment. It meant for the first time in 20 years, I had a reason, not an excuse, for my tics.