Today, Nita Ryan desperately wants to raise awareness – Tourette syndrome is not what you think – and understanding of this misunderstood condition. This recently diagnosed neurological condition has had a devastating effect on her son, Anzac. The 10-year-old is plagued by a range of uncontrollable movements and sounds known as tics. Indeed, they exhibit no less than 20 distinct variations of these tics. Anzac’s congenital condition and autism spectrum disorder have severely impacted his short life. He is subjected to bullying and emotional trauma as a direct outcome.
Anzac’s challenges deepened when bullying at his former school became too much. Nita described how her son first opened up to them about feeling hopeless. “Anzac came to his teacher and us and told us at one point that he did not want to be here anymore,” she shared. The heartbreaking discovery compelled the family to seek a different school for Anzac. Now, he is safer there, although they continue to fear for what lies ahead.
Understanding Tourette Syndrome
Tourette syndrome is widely misrepresented and misunderstood by the media and entertainment industries, contributing to false narratives and stigma against those affected. The condition expresses itself in myriad tics that may be hard for the uninitiated to understand. Anzac’s story is the story of so many others struggling with the same issues. Fortunately, a new pioneering study has shown that Tourette syndrome is exceedingly prevalent nationwide.
The findings highlighted an urgent need for improved treatment and management of the disease. Improving diagnosis and treatment The Task Force recommends the development of national clinical guidelines for diagnosis and treatment. This recommendation aims to alleviate the difficulties many families face when navigating the complexities of Tourette syndrome and accessing appropriate care.
Nita shared her pain about the scarcity of information & resources following Anzac’s diagnosis. “When he was diagnosed with autism, we were given all of this information … here is all of the specialists that can help you, here’s all of the therapies that can help you,” she explained. “When he was diagnosed with Tourette and as it’s progressed, there was none of that.”
The Impact of Bullying and Mental Health
And the emotional toll of living with Tourette syndrome can be just as devastating. In fact, statistics indicate that people with Tourette syndrome have 30 times the risk of attempted suicide. In reality, their rates are five times the national average. This treatment played a role in Anzac’s mental health struggles and feelings of isolation, which had been worsened by bullying he experienced at his former school.
Nita remembered what a struggle it was for her son during those months. “It’s extremely hard, especially if he’s crying in pain. You can’t do anything. There’s nothing anyone can do.” Anzac experienced a profound sense of powerlessness, which prompted him to run away to another school. Now, he’s blossoming thanks to a more nurturing setting.
Even though he feels safer in his new school, Anzac still has worries about being accepted, especially as he enters into high school. “I don’t feel teased at my school right now … I feel like when I go to high school I might be left out or in a lot of trouble,” he admitted. These concerns are representative of all kids with high special needs who are frequently terrified of being socially excluded.
The Financial Burden
The cost burden associated with managing Tourette syndrome can be just as physically and emotionally taxing to families. According to Nita, only one in 20 individuals with Tourette syndrome have access to funding through the National Disability Insurance Scheme (NDIS). As a result, many more families like Nita’s are left holding the bag financially.
“Everything we do, we have to do privately and pay,” Nita stated, highlighting the challenges they face in managing medical expenses related to Anzac’s treatment. Anzac has tried and failed on many other drugs over the years. The increasing costs of medical care have continued to impact the family.
Anzac himself articulated the heavy weight of his condition: “It’s like a curse and it’s a severe condition that isn’t fixable.” His clear and relatable description paints the unfortunate but real fight that not only children with Tourette syndrome, but their parents, still have to go through today.
