Teenagers are often loud, stubborn, angsty, and insecure. Every parent remembers the painful worries that creep in as you make the leap from child to young adult. Teenagers are always worried. There’s a fear of being judged by their friends, of trying to date or failing exams.
But when you’re a teenager with Tourette's Syndrome, all those anxieties are amplified. Often the public judges those with Tourette’s or the world writes them off without ever learning who they are.
My 17-year-old son Ben has lived with Tourette Syndrome for the majority of his life, and our family has learned how to be patient, adaptable, and strong, but at the same time, it hasn’t been easy.
Tourette Syndrome (TS) is a condition that affects the nervous system and is generally characterised by 'tics'. A tic is basically any uncontrollable movement that someone will repeat over and over, almost like a compulsion. These tics are usually brought on by stress and stimulation, often in public, or at inconvenient times. It’s not a condition you can 'fix' but one where you have to learn to live each day as it comes.
From the second they’re born, a mother’s strongest instinct is to protect her child from the worst parts of the world and shape them into the best possible version of themselves. As a teenager with Tourettes, Ben’s life looks very different from how we may have imagined it. However, the more I’ve learned about TS and the people it affects through organisations like Tourettes Action and other supportive parents, the more I see that my child and others like him often defy stereotypes and expectations.
What is Tourette Syndrome, and what are the signs and symptoms of Tourettes?
For a long time, there’s been this assumption that Tourette Syndrome always involves people swearing or saying very inappropriate things, or wildly moving back and forth with really exaggerated movements, but often that’s not the case! Actually, 90% of people with TS don’t swear at all. [Only about 1 in 10 people with TS suffers from Coprolalia or uncontrollable cursing].
The truth is that Tourette Syndrome manifests in lots of different ways from soft vocal sounds, to grunting or shifting around. It can also cause multiple complex tics, where the person regularly repeats a chain of very specific actions. And these tics are generally provoked by stress, tiredness, excitement, or even boredom!
When did you begin to suspect Ben may have Tourette Syndrome and what was the diagnosis process like?
When Ben started school there were no signs of what was to come. However, by the age of eight or nine, we started to notice that there were times when he struggled in the playground - recognising social cues was sometimes a challenge for him. A teacher suggested that he might have autism or ADHD so we went to see a pediatrician who assessed him. At that point, he wasn’t considered to be on the spectrum and we were told to keep an eye open as puberty kicked in.
By the age of ten, Ben had started to tic and the first ones were vocal noises or a physical jerk. By the time he got to secondary school, the tics were very noticeable and primarily manifested themselves as vocal grunts, repeating phrases, or head jerks. We also noticed that if he developed a cold, then the sneezing or coughing from that could become a new tic and last for months as tics are very habit driven.
What do you do as a parent to stop a child with TS from ticing or try to curb this behaviour?
The golden rule as a parent to someone with Tourette Syndrome is to understand that you cannot stop a tic. Your first instinct may be to tell them off for the behaviour, but that’s not going to help. For Tourettes sufferers, telling them to 'stop ticing' is like telling someone 'you cannot blink for the next five minutes'. At first, you’d think 'I can do that,' but then the urge becomes greater and greater until it explodes. For someone with TS, that urge is just as powerful and inescapable.
So what should parents do instead?
Even though you can’t stop a tic, you can influence and impact the environment that’s causing it. Doing things like reducing stress, excitement, and adrenaline are so important. You want to ensure children get enough sleep, don’t watch too much action-packed media, and have healthy strategies to reduce stress about things like exams or a change of routine. From our perspective, the best strategies revolved around communication. We would lie in bed at night and just chat, letting everything that was on his mind come out. The brain runs at 100 mph so allowing a child time to offload everything and discuss coping strategies really helped. We have also tried alternative therapies such as hypnotherapy and acupuncture - both of which have been very helpful in reducing the adrenaline in his body.
Another thing you can do is encourage them to take up a good habit that essentially replaces the tic with another one. So for example, if there’s a physical tic like scratching or hitting themselves, trying to get them to softly tap on a table or scribble on paper when they have that urge can sometimes help. However, you need to make sure that the new habit/tic is ‘socially acceptable’ and won’t drive you mad either!
How was Ben’s experience with Tourette Syndrome in school? Did you run into issues with other parents or teachers?
I have to say we were incredibly lucky. His schools have always been really supportive. Nearly ten years ago, they were not experienced in dealing with students with TS at all. And they have spent a lot of time and effort working with us. As a team, we have learnt what works best for Ben.
The biggest thing to making the school experience as easy as possible is awareness and transparency. I talked to his teachers and support staff right away to explain Ben’s condition, and what his tics look like, and the school has been proactive in talking to all new students and teachers every year early on, so they’re not surprised if he starts to tic during a lesson or assembly.
From the age of around 11, Ben’s teachers have allowed him the space to leave the classroom if he was getting stressed, and many of the staff members maintained an open-door policy for him. So he knows he has somewhere to go where he can sit in a quiet room and just regroup and relax. At exam time he has his own room so that he can stand up if he needs to and also not worry about his tics disturbing the other students.
When I’ve asked other parents if their children mentioned Ben’s tics, they’ve said that they barely mention them because that’s 'just Ben'. It’s a noticeable part of him only in the way that someone might be blonde, or tall, or have lots of freckles. The younger generation right now seems less concerned about TS than most grown-ups would think.
What are some unexpected things you and your husband learned about raising a son with Tourette Syndrome?
Not all neurodiverse traits or symptoms are completely bad things! Many children on the autism spectrum or other related conditions like ADHD, OCD, and even Tourettes, see the world differently and develop these special interests that they’re incredibly passionate about.
My son has this ridiculous ability to memorise geographical facts. He knows every single country in the world including really small ones that you and I have never even heard of. Name any country and he can instantly tell you its location, capital, and describe the flag in detail. He’s also a whizz at memorising statistics, sports team scores, and other information that he cares about. And that’s a skill and a talent, not necessarily what we’d call a 'disability'.
So it’s not all bad, but still, if I’m being brutally honest, we do struggle to find many positives about Tourette Syndrome. It's a pretty difficult condition, and I do have those days where I get cross and frustrated and just say ‘stop ticing’ which of course he can’t. Or sometimes I get embarrassed when we’re in public and everyone is staring. It’s tough.
Now that your son is older and entering young adulthood, how are you preparing him for this next chapter?
All parents worry when their children finally leave the nest and head off to university or enter the job market, but for us, that concern is even greater. Ben’s expressed a few times recently that he’s unsure about the future or is feeling a bit flat and my first instinct is always, 'Oh no, have I missed something, as a mother? Could I have done more for him?' But then you realise that these feelings may not be related to Tourette Syndrome at all. Everything he’s feeling is also part of growing up.
It’s that extra layer of worry on top of the typical challenges of parenting a teenager that’s hard to deal with. As he's got older, I've had to step back. He’s going to go to university and will need to learn to walk into a lecture hall on his own, and say to someone who might be staring at him, 'This is me, I've got Tourettes.'
As a parent, you are their biggest champion but your biggest job is to teach them to advocate for themselves. Ben hasn’t let Tourette Syndrome hold him back from much. Right now he’s got multiple jobs working at a pub and as a football referee (and soon at a milkshake bar as well!). He hasn’t let TS get in his way, but I still sometimes get that urge to step in to explain this condition to a new boss or a new teacher. But he’s learned to handle that and my job is to step back.
What can we as a society do to better accommodate neurodiverse children and adults?
The most important thing is being willing to listen and understand and actually to ask questions. Rather than stare and point, much better to talk and find out more. Don’t write someone off before you’ve met them based on a single diagnosis.
What resources are available to help support people with Tourette Syndrome and their families?
When Ben was first diagnosed with Tourette’s, I searched for information and advice online from experts and other parents like us. I found Tourettes Action UK, which gave me all the facts I needed at a time when I was completely overwhelmed.
Not only does Tourettes Action provide people with trusted sources of information, but they also help connect people to others with this condition, so they can make friends and feel what it’s like to be part of a community.
During the COVID lockdown, when Ben felt more isolated than ever, I reached out to Tourettes Action and found many Tourettes 'meet-ups' and events for teens over Zoom. Right from the first Zoom activity (a shared cooking session making cupcakes), Ben’s reaction was incredible. These were the first people that Ben had met who were like him, he couldn’t believe it and it was a really powerful moment.
I’m proud to promote the work being done by Tourettes Action for anyone with Tourettes or for any parent in my shoes. Their 2022 Tourettes Action campaign was spectacular for spreading awareness and debunking stereotypes.
For anyone who still has questions about what it’s like to live with Tourette Syndrome or to live with someone with TS, I’d advise them never to be afraid to ask. You might learn something that will surprise you.