Introduction: Tourette's Syndrome: a Guide
Hi there, reader! In this instructable, I will give tips on Tourette's Syndrome and what it is like.
This is broken into parts, so feel free to skip anything that doesn't apply to you.
Step 1: What Is Tourette's?
Tourette's Syndrome is a neurological disorder that causes people to tic, which is an involuntary movement (like repetitive blinking or somersaults) or sound (like coughing or baby talk). It also often comes with co-occurring conditions, such as ADHD, OCD, and sensory issues.
Tourette's is usually the most severe for ages 10-12. It often stops around the teenage years, but for others, it stays to adulthood.
There are other tic disorders, such as Chronic Tic Disorder and Provisional Tic Disorder. They are the first steps to getting a full-on Tourette's diagnosis.
Many people think that Tourette's is all about swearing. This is not true; only about 10% of people with Tourette's have a swearing tic.
Step 2: List of Tics
Here are some common tics to look out for:
- Eye blinking
- Shoulder shrugging
- Baby talk (Which is more than talking like a baby, but it can be an accent or way of talking. Sometimes I talk in 3rd person or Pig Latin as a tic. Right now I'm trying not to type in Pig Latin because tics are suggestible.)
- Knuckle cracking
- Head jerking
- Picking at things
- Making pretty much any noise compulsively (One of mine was "KNIT" just out of the blue for no reason.)
- Nose picking
Most of the tics on that list are simple. Simple tics are a single sound or movement, but there are also complex tics, which are composed of multiple tics at once. This can be stuff like cartwheels or just tapping hands in a pattern. (I have a tic where I have to cross my fingers on one hand and then on the other, all while squeezing my toes.)
There are more comprehensive lists on the internet. Check this out:
Step 3: Co-Occurring Conditions
Co-occurring conditions are a huge part of Tourette's and can create more issues than the tics. Above is that iceberg graphic from tourette.org . It shows a lovely representation of co-occurring conditions. Here is a little brief on the top 3:
- ADHD stands for Attention Deficit Hyperactivity Disorder. As the name suggests, it causes difficulty with attention, hyperactivity, and also impulsiveness. (I don't have a ton to say on this one because I don't personally have it.)
- OCD is Obsessive-Compulsive Disorder. It causes for people to have thoughts (obsessions) that lead to repetitive behaviors. It is not simply a cleaning thing; that is just a common compulsion. It centers around anxiety and thinking that if a behavior is not performed, something bad will happen. With Tourette's, OCD can be different in that instead of anxiety about what will happen, a physical feeling happens when an act is not done. (Ex: Socks are wrong and need to be even or the world will end vs Socks are wrong and need to be even to feel right)
- Learning difficulties (dyslexia, dysgraphia)
- Learning problems like these cause problems with things like reading, math, executive function challenges and stuff that don't involve actual intelligence. Kids with Tourette's often have dysgraphia, meaning they can't write very well on paper. These issues are best solved by just letting people use computers.
I highly recommend reading Tourette's is More than Tics . If there was one thing people should read on Tourette's, it would be this.
Step 4: Tourette's in School
School can be especially stressful for kids with Tourette's. There are people around them, kids their age, and it would be embarrassing for a kid to tic. Not only that, but kids with Tourette's generally have worse handwriting. This is why it is important to speak with teachers and staff so that behaviors are understood. Here are some ways to improve a child's school experience.
- A special education plan. Setting up some sort of plan for teachers and the student helps to get the accommodations and understanding that make school more comfortable.
- Breaks. It's embarrassing to tic in front of your friends, but if you don't tic, anxiety worsens and then it's harder to complete work. If someone is given the chance to leave the room for a bit and go to a safe space, it's much easier.
- Fidget toys or just something to do with hands. I like to knit or do origami, but not everyone likes doing that stuff.
Step 5: Running Into People With Tourette's
Let's say you're on a train, and someone next to you keeps jerking their arm. You may think it's annoying, but in reality, it could just be a tic.
People with Tourette's have trouble controlling their tics, so don't attack them for ticing. I would personally like to be ignored. It's really embarrassing to tic in front of people, especially when they stare at you and worse if they get angry. It's just as bad for people with Tourette's as it is for the people watching.
Going to a place and knowing I might tic and ruin stuff is a big fear for me. I didn't go to church for a few years because I was afraid I'd tic and ruin mass.
Another thing: tics are suggestible. When a person with Tourette's sees another person doing an action, they might suddenly have the urge to do it too. (Ex: Someone jerks their head to say yes, and a person with Tourette's does too.) The same thing can happen with accents. (Ex: Someone has a thick accent and a person with Tourette's unconsciously echoes it.)
In short, give people the benefit of the doubt. Weird behaviors may be a tic and just ignore the fact that it is happening unless it hurts anything. (If that does happen, it's okay to ask the person to leave the room politely.)
Step 6: My Story
I got diagnosed with Tourette's when I was 12. Before I had gone to a bunch of psychologists, who thought I was autistic. I ended up in a behavioral health facility, but my mom found out more about Tourette's and realized that might be my issue. Some person beforehand was nice enough to write down that I had tics, so I was able to get the right diagnosis. My younger siblings also were diagnosed at a later point.
I had a lot of trouble dealing with Tourette's, along with my family. Life got a ton easier once we knew what I had. I now try to spread the Tourette's knowledge through the internet. And face to face. But internet reaches more people.
Step 7: Resources
We have a be nice policy.
Please be positive and constructive.
I’m constantly cracking my knuckles and sometimes randomly when I don’t really mean to. Does that mean I have this tic? I also sometimes talk in third person...usually when I’m very concentrated on something...but I feel fine. How would I know?