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.
Story highlights
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
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.
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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.
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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.