With Tourette Syndrome, One Size Does Not Fit All

Camden AlexanderBy Camden Alexander, Tourette Association of America Youth Ambassador

I have been playing the electric guitar since I was nine. I love Green Day, The Offspring, Led Zeppelin and Blink 182. Now I’m in seventh grade, play in a local rock band and feel lucky. I feel lucky because I’ve had the chance to discover how playing instruments helps me be creative and have fun — but it also helps me with my Tourette Syndrome, which I was diagnosed with at age 4.

Playing musical instruments helps me feel in the moment and relaxed. My tics temporarily fade away when I play guitar. I’ve come to love performing and even like to act. I’ve been in You’re a Good Man Charlie Brown, Wiley and the Hairy Man and Hamlet. As I get to know more and more kids with Tourette, I learn that so many of us love to rock out, excel at instruments and perform — who would have thought?

I’ve been getting to know a lot of other kids with Tourette, because this past March, I went to Washington D.C. and was trained to be a Tourette Association of America Youth Ambassador. I went to Capitol Hill, met with elected officials and advocated for increased research funds and awareness for Tourette. The more I learned, the more I realized how interesting and unique kids with Tourette really are. May 15 — June 15 is National Tourette Syndrome Awareness Month, the perfect time for everyone to understand what Tourette Syndrome is, and the people who have it.

We are creative, we play sports, we act, we play instruments and we advocate! I’m excited to now have the knowledge base to present and teach the facts related to Tourette. The big issue with this neurological condition is that it’s misunderstood. Movies and pop culture references often focus on Tourette as simply a disorder which involves saying inappropriate things. While some people do have that piece, it’s a minority of those with Tourette. Tourette Syndrome is not a one-size-fits-all condition. It affects everyone differently and it has zero impact on intelligence.

Tourette is marked by experiencing involuntary movements and sounds (tics) that vary in type and severity. However, there are lots of Tourette symptoms that are less obvious than tics, and these other symptoms generally are not understood by teachers, adults or other kids. That’s why the Tourette Association website is set up so people can learn more about Tourette.Tourette is much more than tics.

When I was in kindergarten and early elementary school my teachers did not understand my symptoms and it led to a lot of problems. By second grade though, with the help of my parents, I got an Individualized Education Program (IEP) and I then started to receive the support I needed. Teachers, principals, and special educators were supportive. I think in this sense I was very lucky as well, because I constantly hear how difficult it is for other kids to get this kind of support.

I remember when a Youth Ambassador presented at my school. I admired him for sharing his story and I knew that I could do the same. I’m thrilled to begin my work as an Ambassador to raise awareness and educate my peers about Tourette. I want everyone to have access to the support system that I have and#Rally4Tourette!

Camden Alexander, age 13, is a student in Marblehead, Massachusetts. He is a trained Tourette Association of America Youth Ambassador.

Listen Now Podcast