Tourette Syndrome
When my oldest son was diagnosed with Tourette Syndrome in 2015, one of the very first places we turned to was Tourette Canada.
Our local chapter has been invaluable on this journey. We've found other kids Eli's age who are dealing with what he does. Andrew and I have found support and an understanding ear in other parents who we can also relate to what we're going through. Our other kids have also benefited from meeting other siblings in families with Tourette.
Let me start off by saying that it's very important to me to keep Eli's privacy intact. Details and specifics belong to Eli's own personal journey, and should he choose to tell his story someday, that will be his own decision... not mine. Yes, it's hard to balance trying to share what life is like every day with Tourette Syndrome without saying too much. It's my goal to share about my end of things, and how it affects me personally as a mother and the life of our family while also protecting Eli.
That said, there is much misinformation out there about what Tourette actually is and isn't. It's my hope that our family can dispell some of the myths of this condition and spread some awareness along the way.
WHAT IS TOURETTE SYNDROME ANYWAY?
Tourette Syndrome (TS) is a neurodevelopmental disorder that affects people of all ages. Folks with Tourette experience sudden and involuntary sounds (vocal/phonic) and movements (motor) that are called tics. Tics can range from hardly noticable and very mild to painful and disabling. Tics regularly change and come and go, depending on stress, excitement, anxiety, being overtired, or sick. TS tends to be more common in males than in females. Most are diagnosed around 7-8 years old like Eli was. Different studies vary, but it appears that up to 1 in 160 children have Tourette.
WHAT'S A MOTOR TIC?
Motor tics can show up as many different types of movements. From a simply repeated eye blink, a facial grimace or neck stretch to complex movements like jumping or somersaulting.
WHAT ABOUT VOCAL OR PHONIC TICS?
Vocal tics are classified as anything that makes a sound. These can range from a very subtle throat clearing or sniffle that most people would dismiss as the remainder of a cold, to outright shouting. Complex vocal tics are words or phrases that happen out of the context of a conversation.
While most people think everyone with Tourette runs around shouting swear words (that was our first thought too), the percentage of people with that condition, Coprolalia, is only about 10-15% out of everyone diagnosed. And no, we haven't experienced that one.
WHAT IS TS+?
TS+, or Tourette Syndrome Plus, refers to the other conditions that are commonly diagnosed alongside Tourette. Having Tourette Syndrome "plus" can include additional diagnoses such as ADHD, OCD, sensory processing disorder, anxiety disorders, learning problems, behaviour difficulties, difficulty with social functioning, and sleep problems.
In our experience, these co-occurring conditions have often caused Eli more struggle than the actual tics at times.
WHAT CAUSES TOURETTE?
This is a question we wrestled with in our family intially. Neither Andrew or I have anyone we know of in our family line that has had Tourette, and we had no idea what could have happened to cause Eli to develop it. In looking at our family history, Andrew and I can trace back a lot of the co-morbid conditions commonly diagnosed along with Tourette (ADHD, OCD, anxiety, depression, sensory issues), but no tics. There is still much research to be done in terms of finding out why it happens, along with how to hopefully cure Tourette one day.
CAN PEOPLE WITH TOURETTE CONTROL OR STOP THEIR TICS IF THEY WANT TO?
We've had people over the years comment quietly to us that they haven't seen or heard Eli tic in front of them. This could be because the urge to tic just wasn't there at that time, or because of something known as tic suppression. Sometimes people with TS are able to suppress or hold in a tic for a period of time. While suppressing a tic is sometimes possible for a little while, it requires complete focus and concentration, and the tic tends to come back even worse once it's eventually released. It can be a toss-up... save some potential embarassement for a time, but deal with the consequences later.
This story is a great explanation from an adult talking about what it's like to suppress tics.
DOES EVERYONE WITH TOURETTE SYNDROME (TS) BLURT OUT OBSCENITIES?
This myth seems to be one of the biggest, thanks to media portrayal over the years as being the “swearing disease”. Admittedly, when Eli was first diagnosed it was also my initial thought – but he had never sworn before! The excessive and uncontrollable use of foul or obscene language is known as Coprolalia, and it actually only affects about 10% of folks with TS. This is a very difficult thing to deal with, and while onlookers might find it funny, for the person experiencing it it’s pretty awful.
IS SOMEONE DOING BETTER IF I CAN’T SEE THEM TICCING?
Tics tend to “wax and wane”, meaning they show up out of the blue, and often leave just as suddenly. The difficulty with TS is that the relief of a tic finally leaving is almost always met with the arrival of a new, different one. Old tics can also circle back, even if you haven’t had it for years. People with TS may try to suppress tics for a while in order to fit into a certain situation. This is often like trying to not blink, and even if it’s possible to hold it in for a while, the tic will return with a vengeance. There are also many tics that aren’t visually noticeable to others like swallowing, throat clearing, muscle clenching, etc. Just because you can’t see a tic doesn’t mean it’s not still happening.
WHAT'S THE LONG-TERM OUTCOME FOR PEOPLE WITH TOURETTE?
In general, most peope notice a decline in tics after puberty. When Eli was first diagnosed, his doctors told us that the outcome for Tourette is usually in 3rds - 1/3 will outgrow it completely by adulthood, 1/3 will stay the same, 1/3 will worsen. There is no way to predict by current tics what the outcome will be. So we wait.
CAN PEOPLE WITH TOURETTE BE SUCCESSFUL AS ADULTS?
Most people with Tourette are able to maintain a good quality of life. Again, this depends on the severity of each case, and where you land in the 3rds pie.
Some famous people who have Tourette:
Dan Ackroyd
David Beckham
Howard Hughes
Jamie Grace Harper
Marc Summers
Tim Howard
Wolfgang Amadeus Mozart
There's so much more I could say about Tourette, and I plan on sharing more about it as time goes on. For now, I hope this has given you a clearer picture of what TS actually is.
