The Long Road to My Son’s Tourette syndrome Diagnosis

I feel this is something I need to share. As difficult as it is to relive the challenging years my beautiful child went through, the journey to a diagnosis was long and exhausting. Here is our story…

The Early Years

The signs began early. Even as a toddler, my son showed unique behaviours that initially led to his autism diagnosis. He’d reach milestones only to regress, and he was unusually particular about food, sniffing each bite before eating and favouring plain rice over everything else. Eye contact was rare, and he needed strict routines. He’d only wear one particular pair of gumboots—refusing any other shoes, even when they no longer fit.

One quirky detail was his Spongebob pillow. He couldn’t sleep unless its arms and legs were perfectly aligned, taking time each night to adjust it just right. At preschool, he would sit alone in the corner, uninterested in group activities. Observing these patterns, I began to suspect autism and sought help. But despite seeing several doctors, my concerns were often dismissed. Attending a lecture by Professor Tony Attwood, PhD, on autism opened my eyes further, and my research convinced me that this was likely his diagnosis.

When my son was about five, I took him to a pediatrician who suspected autism and recommended early intervention and speech therapy. We started therapy, although early intervention wasn’t available as they felt it wouldn’t suit his needs. He also sent us to a specialist clinic for the official autism diagnosis.

Primary School

The sniffling became more frequent and intense. I took him to doctors who again suggested antihistamines and nasal sprays, yet the issue persisted. His behaviour was sometimes dangerous, and he eventually required a Teacher’s Aide for supervision. I remember one day finding him atop a slide at preschool, about to ride down with a skateboard! Some primary school teachers labelled him as “just a bad kid,” dismissing his needs.

A Pivotal Year: Year 6

In Year 6, the sniffling escalated into vocal noises and physical tics, making my son a target for bullies. He’d throw up before school from the stress and often needed to go home early. He fell behind in his studies. Rituals emerged: he flicked light switches multiple times and tapped drinking glasses repeatedly before setting them down.

Thankfully, his Year 6 teacher was exceptional. She genuinely wanted to help and documented her observations, providing me with valuable information to take to his pediatrician. While waiting for the appointment, I discreetly filmed his tics to have a clear record.

One evening, I saw a contestant on a reality singing show who had Tourette syndrome, and it immediately clicked. It seemed to align with what my son was experiencing.

The Diagnosis

At the pediatrician’s office, I shared my research on Tourette’s, showed the videos, and gave the teacher’s notes. I expressed my belief that my son had Tourette’s—and the pediatrician agreed. Along with Tourette’s, he was diagnosed with OCD, ADHD, and social and school-related anxiety. The paediatrician explained Touette’s was like an umbrella, with Tourette’s at the top and all of the other comorbidities under the umbrella. He also explained how the symptoms can be similar to autism but often autism goes hand in hand with Tourette’s. My son was put on a medication called Respiradone.

My son’s teacher continued to be a strong ally. She collaborated with me to create a plan for educating his classmates and teachers about Tourette’s. With his permission, my son worked with the school counsellor to create a video explaining his tics, which was shown at a school assembly.

Looking Ahead

I wish I could say that high school brought more understanding, but unfortunately, that wasn’t the case. The challenges he faced there are a story for another time.

Thank you for reading, and please feel free to reach out if you’d like to discuss this journey further.