Kenji and Adley

‘If we have an animal who can't communicate with us, but we know something is wrong, we give them the full gamut of tests to determine what it is, but that is not afforded to my child.’

Kenji, 20, is autistic, non-verbal and has an intellectual disability. His mother Adley told the Royal Commission, ‘His inability to speak, it's often mistaken as not having anything to say … in his silence he communicates more clearly than most.’

If Kenji is in pain or distress, he injures himself. The level of damage he inflicts ‘is ferocious’ and ‘quite unbelievable,’ Adley said.

Kenji was about six when he had his first episode. He had ‘some sort of accident’ at school. Nobody thought anything was wrong until he started self-harming. Adley took him to hospital and asked doctors to give him a full body scan. They didn’t ‘see the point’ and sent him home.

Adley continued to seek help. Three months later she convinced a private specialist to order a scan. Kenji had a broken leg.

At 15 Kenji had another serious episode, banging his head repeatedly. Adley took him to the children’s hospital, told them it was a medical problem and asked them to do a number of tests. They refused and sent him home. The next day he injured himself so badly he lost sight in one eye.

Adley rang the school principal for help. The principal took Kenji to hospital and forced them to admit him.

At first doctors said Kenji was constipated, but he became so unwell he spent three months in hospital. It was a fight ‘every day’ to keep him there, Adley said. Different government departments argued about the cost of his care and who should treat him. Ultimately the hospital appointed a medical team that included physicians and psychiatrists. ‘They found multiple things wrong with him, constipation was not one of them.’ Kenji had a ‘massive infection’ and 15 broken bones.

Adley could no longer care for Kenji at home because of the level of support he required, so he moved to respite accommodation. After the NDIS was introduced, the house he was living in became a group home. Three other men moved in.

A few years ago, a new house manager decided Kenji was overweight. She limited his food choices, including his favourite foods, and put locks on the cupboards. Kenji lost 25 per cent of his body weight. His self-injuring escalated and ‘was just horrific to watch’. Adley repeatedly asked staff to take him to hospital but they didn’t believe it was a medical issue.

‘And there he was, destroying himself and his head and his body while everybody watched on.’

Eventually Kenji went to hospital, this time to the adult section. Adley asked doctors to put him in a general ward but they refused. ‘Because [Kenji] is complex, in that he can't tell you where the issue is, nobody wants ownership of him … nobody wants to be his doctor.’ The only bed they offered him was in the mental health unit which was ‘at best, horrific’. They changed all of his medication and Adley said ‘overmedicated him’ to manage his behaviour.

When he returned to the house, the house manager continued to limit his food and use large amounts of medication. ‘He couldn't stand, he was virtually bedridden and emaciated.’ Adley made a formal complaint and the house manager moved to a different home.

Things have improved but staff continue to assume Kenji’s self-harm is a behaviour issue. He recently had an undiagnosed ear infection that burst. ‘I can only begin to imagine what the level of pain was, for that ear to burst, and they were just drugging him because they wanted his behaviour to stop.’

Adley doesn’t want to ‘walk away’ from the service provider because the staff know Kenji. ‘If I can get it to work for him, I think he's better off, and he has a long life ahead of him.’