Marion and Rob
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.
‘What I’ve learnt is having a diagnosis of autism is not the worst thing in the world, and actually, [Rob]’s autism is the last thing I’d probably change of him. I would certainly change … a lot of people who have been in his life.’
Rob, late teens, is autistic and non-verbal. He has intellectual disability and lives with complex trauma.
Marion, his mother, told the Royal Commission that Rob has a great sense of humour, can be ‘quite jokey’, very playful and is ‘the best judge of character’.
Rob attended early intervention behaviour programs and six different independent and public schools. Almost all of them used restrictive practices.
Marion believes the early intervention programs were financially exploitative and says she spent around $300,000 believing their ‘big promises’. Rob would fight the restraints. He transformed from a relatively placid child to a child who learned to fight back.
When Rob was five, he was locked in a school toilet for two hours. Staff didn’t contact Marion and, when she arrived to collect Rob, they couldn’t find him. Marion found her son ‘cowering in a corner and crying’, and he continued crying for hours afterwards. He had bumps on his head and he’d been biting his arms so much that he’d torn the skin off. Rob never went back to that school.
‘That was the beginning of his journey, unfortunately, with self-injury, which he still has to this day.’
Next, he went to a state primary school. They called Marion on a daily basis to collect Rob. Marion said the school and education department failed to provide enough support to Rob’s full-time aide, who had a breakdown and took extended leave.
Marion moved Rob to another special needs school. When Rob’s support worker came to collect him, she witnessed several adults restraining him. Rob was so distressed after one incident he was hospitalised for more than 100 days.
While in the hospital Rob refused to wear clothes, would only sleep on the floor and would smear himself with his faeces to keep staff away. Staff had no idea how to deal with him.
The hospital social worker badgered Rob’s parents to relinquish him to the state. ‘[But Rob is] a very loved and valued family member,’ Marion said, and the family ‘stood firm’.
Marion asked the state disability department to give Rob more support, and the hospital paediatrician supported her. But the hospital CEO didn’t, and made ‘inappropriate comments’ about Rob on discharge.
Marion believes the hospital put an alert on Rob’s file. Three months later when he was having seizures, hospital doctors refused to conduct any tests, telling Marion to take her son home.
Rob eventually went to a group home run by a service provider, but he is the only resident.
The initial weeks were highly distressing. One of the provider’s psychologists instructed staff to wear armoured gear when dealing with Rob. They forced him to get dressed, have a shower, wear nappies and a onesie. One time, Marion saw six adults with shields, helmets and other padded gear surrounding him. Extremely confused, Rob tried to fight them off.
When the CEO heard what was happening he acted immediately.
Rob now has ‘some of the best people [Marion] has ever met’ supporting him. He refused to leave his bedroom for nine months, but staff were extremely patient and would enter the room quietly and clean him.
Marion says Rob is now in a really ‘good place’. He leaves his bedroom and has even ventured into the backyard.
‘I just want all the staff to treat him humanely and kindly and act in a trustworthy way, and hopefully with time he will learn to trust people again.’
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.