Jaylen Arnold is the youngest person ever diagnosed with Tourette syndrome
He says his disorder led to teasing and bullying
He now leads a national foundation to stop bullying
Editor’s Note: In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle – injury, illness or other hardship – they tapped their inner strength and found resilience they didn’t know they possessed. Ten years ago, Jaylen Arnold became the youngest person ever diagnosed with Tourette syndrome; today, the 13-year-old is leading a national foundation to put an end to bullying.
When Jaylen Arnold was diagnosed with complex Tourette syndrome, his life changed. Having this neurological disorder – which causes repetitive, involuntary movements and sounds called tics – led to frequent teasing and eventual bullying. It motivated him to lead the charge to stop childhood bullying by addressing students across the country with his Jaylen’s Challenge Foundation.
CNN: How did this all get started?
Arnold: In second grade, I was getting bullied a lot for my tics. A lot of my friends got bullied, too. When my mom made the decision to pull me out of that school, I felt like I was leaving behind all the kids that were being bullied, too. I figured if that was just my little second-grade class being bullied, what about the whole world? So I went to my mom and we made Jaylen’s Challenge. We talk about Tourette syndrome, how bullying isn’t good, and how you can prevent bullying.
CNN: So how can you prevent bullying?
Arnold: You always have to tell an adult. Maybe you need to find new friends. A bully might pick on you, but he’s not going to pick on four or five kids, you know?
Bullies don’t like “different.” I used to get asked a lot of questions, and a lot of the time, I would be too embarrassed to tell them about my Tourette’s, or I just didn’t want to, because it’s a long story. So they start imitating my tics or just think I was trying to freak them out or be the class clown. I remember putting on a fake smile and trying to act like I was laughing at them instead of them laughing at me. They would copy me, and it would really hurt. That’s how the bullying started.
But, you know, I really can’t blame them for being confused or scared, because I wasn’t even sure of what was going on myself at the time. If I didn’t have Tourette’s and somebody came up to me and started twitching or making weird noises, I wouldn’t really know what do think about it, either.
CNN: I’ve heard all that extra attention can actually make your ticcing worse. Was that the case for you?
Arnold: Yes! It helps when I’m not stressed or when you accept it. When you accept my Tourette’s, I don’t tic as much. But when you stare or ask lots of questions, I get really stressed and the Tourette’s gets worse and I go all over the place. A lot of the time, it really stinks, because I can’t do anything. I like to go to a room and go off by myself. But if that’s not an option, I try to be really quiet and concentrate on something that keeps me focused. I play a game in my head or think about something. I have to distract my mind from things that set it off, like stress or bullying.
CNN: Can you hold the tics in sometimes? That’s one thing that confuses people. You can actually control them, but only to a certain extent.
Arnold: Sometimes I can control it, but a lot of times, it’s just kind of like a rocket ship. You know how it fills up with fire and the gas and then finally it’s just like, “Whoosh!” So if I have to hold them back, it usually comes out a lot more than it would’ve if I didn’t hold it in. It feels good to finally release it and just get it out.
CNN: Is there anything you can’t do? Anything you feel like you’re missing out on, because of your Tourette’s?
Arnold: I used to not be able to go to the movies, but I’ve learned to focus on the movie and they just go away for a while. Plus, no one is staring at me. They’re watching the movie. I can ride my bike, skateboard, run.
But I have to do a lot of things most kids don’t do, like having meltdowns and taking medications. Everything else is easy for me, except being quiet. I can’t play hide-and-seek. When I try to trick people or fake sleep, I have to turn the other way so people can’t see my facial expressions, because my face tics when I try to keep my eyes closed. I can only win if I’m at a high point at least 20 feet away, when I’m not within hearing distance. This one time, I gave myself up, because I was on top of my mom’s shelf and somebody was walking past. They were about to walk right by and I let out a little squeak and they got me! I was so frustrated.