A young man who lives with Tourette’s syndrome has told the disability royal commission he has been left “ruined” by his experiences at schools in Queensland.
- The Royal Commission heard Jack’s teachers punished him when he experienced ticks
- Jack’s parents were encouraged to pursue a false diagnosis of autism to be eligible for support funding
- Now 19 years old, Jack has agoraphobia and rarely leaves the house
The parents of Jack have given evidence about the school life of their now 19-year-old son, who sent them a text message to read to the inquiry.
“You’re there fighting for me and I’m too unwell to go,” Jack’s text message read.
Alex and Sharon, known to the commission by their first names, have been married for 28 years and Jack is the youngest of their three sons.
In emotional testimony, they detailed his time as a student at schools in Townsville.
“He’s only got grade 4 English and maths skills,” his mother Sharon said. “He can barely write his own name.”
Initially Jack loved going to school but he had good and bad experiences with teachers and other students.
Sharon told the royal commission that initially there was confusion about Jack’s diagnosis and he was seen as “naughty”.
A paediatrician assessed Jack’s behaviour and told his mother to take him home and give him a “good flogging, which clearly we didn’t do”.
In year 3, Jack’s behaviour was “worsening” at school and at home and it was a “really, really tough year”.
When he was nine, Jack was diagnosed with Tourette’s syndrome. His parents say they repeatedly asked the school to apply for funding to support their son but it was refused.
“They dismissed it and said Tourette’s was not a disability, it didn’t fit into the top six of disabilities,” Sharon told the inquiry.
“I didn’t realise there was a top six, I didn’t realise there was a competition going on.”
The commission heard the school “strongly suggested” that Sharon and Alex should have Jack diagnosed as autistic in order to attract funding for support.
Jack was taken for further assessments and while he showed signs of depression, anxiety and traits of Asperger’s, he did not “tick a box” for autism.
“I felt like (they’d) taken away the last chance we had to get Jack help at school,” Sharon said.
“At the same time I was relieved because I didn’t want him to have yet another label.”
The inquiry heard about the financial and emotional impact on the family.
To be able to afford Jack’s medical bills, his father moved to a higher-paying job that took him away from home during the week.
“That was a tough time for the whole family,” Alex said. “The other two boys had to sort of step up and be a dad.”
The inquiry heard teachers showed a lack of understanding about Jack’s disability. He was “dragged” to the principal’s office “by his ear” when during a Tourette’s tic, a teacher heard him say the word “mongrel”.
“They didn’t want to look into that he had a disability,” Jack’s father said.
One teacher suggested Jack “learn how to control his Tourette’s in public”.
“It’s like telling a child not to sneeze,” his mother told the inquiry.
The couple urged the royal commission to consider better disability training for all school staff.
Sharon revealed the family had offered to pay for a teacher’s aide for Jack out of their own money but the school said it “didn’t work like that”.
Jack was prescribed anti-psychotic medication to control his tics but it made him put on weight and he experienced more bullying at school.
Sharon told the inquiry Jack became frightened of the other children and did not want to attend school.
After years of trying to find alternative options for Jack, and with his mental health at crisis point, he was withdrawn from high school and ended formal education at 13 years old.
That was six years ago. Jack has now also been diagnosed with agoraphobia and rarely leaves the house.
He is on the National Disability Insurance Scheme (NDIS) and has carers who come to his home.
His father, Alex, told the commission Jack’s school experiences have stayed with him.
The couple revealed their fears for Jack’s future.
“He’s trapped in our house because of things that happened to him when he was a young boy, ” Sharon said.