Characters with Tourette's Syndrome are uncommon, but as our understanding of the disorder increases and awareness spreads, we're finding that it's more commonplace in real life than previously thought. As I mentioned in this post, there the numbers were once as low as one in every thousand children, some think that the statistics might actually be one in every hundred. As the prevalence rises irl, why shouldn't it rise in the media?
So let's talk shop.
How do you design a character with Tourette's? Start with a character without Tourette's. The disorder has a typical onset of age 7-12, but the full range extends further, and there is no "typical" case of Tourette's. Regardless of the age, your character existed before the Tourette's, even if only in an infantile stage. They had likes, dislikes, interests, hobbies, skills, a personality--before the Tourette's, your character was a whole person.
Take a minute to think about how old your character was when their tics started, and what they were like before the onset. Make a list of the things they enjoyed, the things they hated, and what they felt--their relationships, their background, their passions and opinions and lifestyle.
Miribeth Cumberbatch, a girl in my current WIP, is an athletic teenager with a passion for body-building. She loves to read and does fairly well in school. She's always had trouble making meaningful connections with kids her age and tends to spend a lot of time with her mothers. Until moving to Niloh, Miribeth never really questioned the state of the world--like many teens, she took things as they were and dealt with what problems she needed to on a day-to-day basis. She has very few strong opinions and always tries to find the path of least resistance and lessened conflict when she can; her muscles are just for show. Her family is poor, so she likes to do for others (in a non-monetary fashion) and she feels particularly protective of her mothers, feeling that they work hard enough to provide her with what they can. Thus, when she senses that something would inhibit plans they're excited about or limit the options available to them, Miribeth tends to omit, stretch the truth, or outright lie.
And she also has Tourette's.
Reading that passage isn't terribly important, so don't feel bad if you tl;dr-ed it; the important part lies in the fact that there's a lot of shit up there, and her disorder takes up the line at the end. Am I saying it's not a part of who she is? FUCK no! It colors every part of who she is, but people have a tendency to start with a disorder (or a phobia/sexuality/etc. etc.) and do the rest later, which often ends in disaster. Maybe you already have a firm handle on CREATING the characters and you just need help doing the actual nitty-gritty shit, in which case just skip down a bit, no one told you you had to read the whole article. But please don't just ASSUME you're one of those people, either. If you have trouble writing/have never written a character with something "different" about them before, at least try it this way once.
"Okay Maggie, I have my character. Now what?" Now you start to "filter in" the disorder. How old was your character when they began experiencing tics? What about when they were diagnosed? The younger your character is when they start experiencing tics, the more used to them they're likely to become--but the less accepting their classmates are likely to be. Depending on the child and the parents, it can also be much harder for the parents to understand that what's happening to their child isn't voluntary; young children aren't as capable of explaining to their parents that they're not in control of what their body is doing, and since many young children will lie about anything they think they can get away with, it can be hard for parents to believe it even if the child manages to express the sentiment coherently.
When children begin onset at older ages, however, it can be seen as a purposeful attempt at being contrary, particularly if the children have contrary personalities. Some parents don't believe in Tourette's, or will never be able to admit that something is happening to their child, but I'll touch on parental impacts later.
The larger the gap between onset and diagnosis, the more emotional damage the child is likely to suffer at the hands of the disorder and those around them. Without a diagnosis the child might be scared (or even terrified!), uncertain, and try to repress their tics, which rarely works and is extremely painful to do. The child may be afraid that other people might notice, and when people do notice they're not likely to immediately react with understanding--most people don't know anything about Tourette's.
In the time between my onset and diagnosis, I remember being terrified every time I went to play practice, afraid that someone would notice the way my neck twitched and that I'd be thrown out of the play and never allowed to act again. I was afraid that the people I considered stage friends would think I was a freak and never talk to me again, or worse, ridicule me for something I had no control over. I still remember crying in the bathroom of the church basement one day during a water break because we were trying to dance and I couldn't keep my head still, and I was one hundred percent convinced that I'd be found out.
If your story involves your character at a young age, these may be experiences you'll want to touch on, but you'll want to consider them even if the character is older. The things that other children (and parents!) do and say when you're in such a fragile state can be more adhesive than hot glue, and they can affect the future behaviors and decisions of your characters. For instance, Miribeth's onset was at the age of seven, and her diagnosis at the age of nine. Her tics were mostly mild, but her teachers were convinced that she was a defiant little shit, so her classmates teased her and made fun of the noises and the faces she made. This is part of the reason that Miribeth has trouble forming deep bonds with kids her age--she can't forget that some of her classmates would call her the Grinch or ask her where her owner was when she barked, and teachers make her nervous because she had too many of them say the wrong things and ask the wrong questions.
After diagnosis, things are different depending on the school, the parents, the teachers, the student--just as in all things, the variables make a difference. I've also found that emotions concerning Tourette's are often in flux; the child may come to terms with their affliction following diagnosis, but they'll have days when all they can do is cry, days when they want to hit people and scream at the world, days when all they want is to be left alone or else held close--it can be an isolating experience, and it can make a child feel like a monster, or like they're broken. Children can learn to accept their disorder and to love themselves, Tourette's and all, but it is an uphill climb, and even once it evens out, the occasion rainstorm can send you sliding right back down to your last campground, especially if the terrain (ie, the variables mentioned earlier) is unforgiving.
In the next post on the subject I'll either dive deeper into Tourette's personal impact, or talk about parent, teacher, and comrade feelings and reactions. I'm probably forgetting things and therefore may need to revisit this later, but the best way to figure out the personal impact of Tourette's in any given situation is to consider your character's personality and/or ask someone who has it--my inbox (or the comments section!) is always open if you have any questions, and if you have friends with Tourette's they may be quite pleased to share their experiences. If anyone has anything they'd like to add, let me know! The comments section is always open!
