Understanding Tourette Syndrome: One Family's Journey

To help raise awareness and understanding of Tourette Syndrome, Alex's mum shares her family's experience navigating diagnosis, school, friendships, and everyday life. This interview highlights both the challenges and strengths that come with raising a child with Tourette Syndrome. (Photo above for illustrative purposes only)

Tell us a little about Alex.

Alex is a 10-year-old boy who lives and breathes soccer and loves gaming. He attends a local state school that he absolutely loves. In fact, he's probably the only child in the world who wants to go to school every day!

Sometimes I offer to let him stay home and rest because his body is working so hard every day, but his response is always, "No Mum, I want to go to school." It may not always be for the learning, but it's definitely for his friends.

Considering everything he deals with, Alex is incredibly resilient.

What was the journey to diagnosis like for your family?

Alex was diagnosed with Autism at age four.

Within a few months, he started medication and therapy supports. We delayed starting school until he was five and a half because we felt he wasn't quite ready.

About halfway through Prep, his teacher contacted me because other children were commenting on noises Alex was making. The sounds came from the back of his throat and sounded a bit like a frog croaking.

After speaking with Alex's paediatrician, we were told they were likely tics. At first, we hoped they might go away, but over time they continued and became more noticeable. He even made the sounds while sleeping.

As the years went on, Alex developed additional vocal tics. By Grade 2, he had also developed physical tics, including head shaking, which caused neck pain and led us to seek physiotherapy support.

Once Alex had both vocal and motor tics, his paediatrician began discussing the possibility of Tourette Syndrome. We learned that diagnosis takes time because the tics need to persist over several years and often change over time.

After years of observation, therapy support, and monitoring by his paediatrician, Alex received a formal diagnosis of Tourette Syndrome in late 2025.

The journey was stressful as a family because Alex's wellbeing was always our priority. His tics constantly changed and often became more intense over time.

What did you understand about Tourette Syndrome before Alex's diagnosis?

Honestly? My understanding was mostly that people with Tourette Syndrome swore.

I didn't know much beyond that. I thought it involved swearing and unusual movements.

What I've learned is that Tourette Syndrome is neurological. There is no cure, and people can't simply stop or control their tics.

I even had a teacher tell me Alex would grow out of it. That's not how Tourette Syndrome works. It's a lifelong condition.

How does Tourette Syndrome affect Alex day-to-day?

Alex has Tourette Syndrome with coprolalia, which means he experiences both motor and vocal tics, including swearing tics.

He often feels embarrassed by his tics when he's out in public. He's actually very good at suppressing them, but suppressing doesn't make them disappear.

I often describe it like a balloon. The pressure builds and builds throughout the day, and when Alex gets somewhere safe—usually home or in the car—that balloon eventually pops. That's when all the tics come out, and what we call a "tic attack" can sometimes last for hours before he settles again.

Alex can feel the urge to tic, but he can't stop it.

I always remind him not to be embarrassed. This isn't something he can help, and together we can help educate others.

What has helped Alex feel understood and supported?

Alex has an amazing support team around him. His therapists have taken the time to learn more about Tourette Syndrome so they can better support him.

Right now, a big focus is helping Alex build confidence and understand that Tourette Syndrome is only one part of who he is.

His Occupational Therapist created a social story all about Alex. We read it together regularly, and it helps reinforce that he is much more than his diagnosis and that he matters.

What challenges have you experienced at school and in the community?

With friends, Alex has been incredibly lucky.

His friends know he has Tourette Syndrome, but they don't define him by it. To them, he's simply their friend who loves soccer. As they often tell me, "We've got his back."

Before Alex visits friends' houses, I usually give parents a quick overview of Tourette Syndrome and explain what they might see. Most of these children have grown up with Alex since Prep, so they're very accepting.

School has been more challenging.

Alex's Prep teacher was wonderful and supportive. However, in Grade 1, one teacher placed him in the "naughty corner" because of his vocal tics.

When Alex got into the car crying after school and told me what had happened, I was heartbroken. After several conversations and emails, the teacher apologised, but it reinforced how important advocacy would become.

As Alex's tics increased, new challenges emerged. At one point, other students began copying his movements because they thought they were funny. Fortunately, Alex is resilient and often laughs things off, but it highlighted the need for education.

The school later asked if they could read a book about Tourette Syndrome to the class. I agreed, but I encouraged them to be open about the fact that Alex has Tourette Syndrome. Children are often very understanding when they have accurate information.

Today, I continue advocating regularly to ensure teachers understand Alex's needs.

Sometimes that means requesting stakeholder meetings and bringing members of Alex's therapy team into the school to help educate staff and advocate alongside us.

In the broader community, people generally don't say much.

We occasionally notice stares, particularly in busy environments like sporting events or large crowds, where Alex's tics can increase. During those times, my husband and I stay close and keep a watchful eye to ensure he's comfortable and supported.

What accommodations and supports have been most helpful?

One of the best things people do is treat Alex like everyone else.

At school, teachers have offered accommodations when needed. For example, when hand and arm tics make writing difficult, he's been offered the option of using an iPad.

Alex doesn't particularly like feeling different, so he often prefers to write by hand.

His teachers are also mindful when he becomes fatigued and will sometimes build movement breaks into the day for the whole class.

At home and with family, life continues as normally as possible. Alex doesn't want to be treated differently, so we focus on supporting him while also allowing him to simply be a kid.

What do you wish more people understood about Tourette Syndrome?

People with Tourette Syndrome are just like everyone else.

Don't stare. Don't treat them differently.

If anything, ask whether there's something you can do to make the environment more comfortable or accessible.

A little understanding goes a long way.

What supports and therapies have helped your family?

I wouldn't say anything makes Tourette Syndrome easier exactly, but some things definitely help.

Being at home, where Alex can relax and be himself, helps. Having routines and knowing what to expect also reduces stress and anxiety.

Alex works with a psychologist who helps manage anxiety, an Occupational Therapist who supports everyday life skills, a physiotherapist who helps manage pain and muscle strain from tics, and a speech pathologist.

Alex also has a small stutter and experienced delayed speech, not speaking until he was around four and a half years old.

Together, this team helps support Alex's wellbeing and independence.

What message would you like to share with the community?

Don't treat people with Tourette Syndrome differently.

Offer support when needed. Make sure they're safe. Most importantly, take the time to understand.

We need far more awareness of Tourette Syndrome. Alex is only at the beginning of his journey, and every day we're still learning.

New tics appear, old ones disappear, and there are always surprises.

I've learned a lot by connecting with other people who have Tourette Syndrome and by listening to their stories. One thing I've noticed is that many professionals still have limited knowledge about Tourette Syndrome and often need to do their own research.

I've also realised there are many people living with tics in our community.

Whether they've received a diagnosis or not, greater awareness and understanding can make a real difference to their lives.

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Tourette Syndrome: Quick Facts

• Tourette Syndrome is a neurodevelopmental condition characterised by both motor tics (movements) and vocal tics (sounds). Tics are involuntary and can vary in type, frequency, and intensity over time.

• Research estimates that approximately 1 in 162 children (0.6%) have Tourette Syndrome.

• Studies suggest that around half of children with Tourette Syndrome may remain undiagnosed, meaning prevalence is likely higher than diagnosis rates alone indicate.

• Tics can be simple (such as blinking, throat clearing, sniffing, or shoulder shrugging) or complex (involving larger movements, phrases, or sequences of actions).

• Contrary to common stereotypes, most people with Tourette Syndrome do not have swearing tics (coprolalia). Research suggests coprolalia occurs in approximately

10–15% of people with Tourette Syndrome.

• Many people with Tourette Syndrome also experience other neurodevelopmental or mental health conditions, including ADHD, Autism, anxiety, and OCD.

• Tics often increase during periods of stress, excitement, fatigue, illness, or heightened emotions, and may reduce during periods of intense focus or relaxation.

Sources

Centers for Disease Control and Prevention (CDC)

• Data and Statistics on Tourette Syndrome

• About Tourette Syndrome

• Diagnosing Tic Disorders

• Five Things to Know About Tourette Syndrome

Tourette Association of America

• Educational resources and clinical information on Tourette Syndrome

Statistics reflect current international research and prevalence estimates at the time of publication. Individual experiences of Tourette Syndrome vary considerably.