Kassandra
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Kassandra’s teenage son is autistic.
‘He is a lovely kid. He is my practical child,’ Kassandra told the Royal Commission. ‘We knew there were some issues in kindy. Well, in preschool really, we knew. He got bullied quite a lot and in hindsight was missing a lot of social cues.’
Sandra works in the disability sector, but was shocked when a doctor diagnosed her son with autism in year 1. When she tried to get NDIS funding for early intervention she found he’d just missed the cut-off age.
‘Often you will have children with disability being first diagnosed in year 1, but families and the children are unable to access the early intervention childhood supports at that stage because of the arbitrary cut-off date of seven years of age.’
Kassandra quit her job and borrowed money to get him support.
She said that, even with NDIS support, a disability diagnosis is a significant financial burden for most families. Women especially are ‘penalised for being carers’.
Doctors also diagnosed her son with attention deficit hyperactivity disorder and anxiety, and put him on a trial to see which medications worked best.
‘At one stage I had to take him to [hospital] emergency where the nurse proceeded to give me a lecture on drugging my child. Which was a bit hard to deal with when you have a child who’s reacted so badly to a medication that’s been prescribed.’
One doctor told Kassandra that her son’s autism was partly caused by a ‘lack of maternal engagement’.
‘Parenting is the woman’s fault. It’s never the dad’s fault. And they cop it, particularly single parents. I see a lot of it. They don’t receive anywhere near the amount of support that they need in this space.’
There was also little help for her son at school, which put him in special classes.
‘If you ever want to go to a very un-PC place about disability, go to a high school. They're terrible. So he refused to go there because he said that you were basically just putting a target on your back that said, “Bully me.”’
One teacher told Kassandra it was ‘too time-consuming’ to teach her son, so she went back to work to pay for tutoring.
‘One of the things that I've been saddened by is the lack of understanding and tolerance for disability in the school communities. I've become aware that it’s not a mandatory part of training for teachers.’
Eventually her son graduated from high school and applied to university. However he failed to get into his preferred course because he misunderstood the midnight deadline and waited until midnight to send his application.
‘He goes, “They didn’t really mean midnight did they, mum?” and I went, “No mate they really didn’t mean midnight. It was before midnight.” … I did try and explain [to the university that] it’s because he’s very literal and you told him midnight and so he did it at midnight and missed the cut off, [but] the university will not make any concessions on the basis of his disability.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.