Jimmy and Lukas
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‘What is out there in terms of assisting autistic people, assistance seems to be lacking, broken, heading in the wrong direction, seems to be full of unworkable practices and policies.’
Lukas is dad to Jimmy who is mid-20s, autistic, non-verbal and has ‘high needs’.
When Jimmy left school and was at home full time, Lukas organised in-home support from a specialist autism service provider.
Lukas told the Royal Commission the support provided was ‘bloody inadequate’.
‘They were sending pretty much anybody around,’ he said. ‘Just tick the box, shift’s covered.’
This was detrimental to Jimmy who was ‘going backwards’ with ‘people who didn’t understand him and couldn’t meet his needs’. He was gradually disengaging and his behaviours were escalating.
Lukas consulted a psychiatrist from the service provider, who prescribed risperidone to treat Jimmy’s behaviours.
Six months into the treatment, Jimmy started having dystonic episodes – ‘on his feet, locked up rigid, eye balls rolling back in his head, he’d basically have a seizure and just rock there’.
The psychiatrist acted like it was no big deal. ‘We’ll just keep an eye on it,’ he said. Jimmy continued having one of these episodes every two months or so.
Still dealing with inadequate in-house support, Lukas arranged for Jimmy to attend a trial at a group home run by the service provider. Lukas described the home as ‘chaos’, with staff who had no understanding of how to support the residents.
‘The staff couldn’t handle [Jimmy]. He wasn’t being bathed for two weeks. He wasn’t eating, they couldn’t get his nutritional vitamins into him, he pretty much confined himself to the room. His self-injurious behaviour was really escalating.’
Jimmy was still being medicated with risperidone. When he had dystonic episodes in the family home, the psychiatrist had been ‘so flippant about it’. But when Jimmy had his first dystonic episode in the group home, ‘all of a sudden it was a major medical emergency’.
The psychiatrist called Lukas – he had to take Jimmy off the medication urgently. This seemed dangerous, and Lukas wanted a second opinion.
He arranged for two other experts to see Jimmy. A ‘leading psychiatrist’ advised he should stop taking the medication. But a ‘leading neurosurgeon’ said ‘double it’.
Lukas had no idea what to do. Meanwhile he was having meetings with the team at the group home who were advocating additional medications, suggesting ‘half a gram of this, half a gram of that,’ like they were ‘dreaming up a cake recipe’.
Lukas researched the side effects of the suggested medications – ‘they were pretty wild’. When he expressed his concern the doctors ‘smiled’ and told him not to worry – they had drugs to deal with the side effects of the other drugs. Lukas told them he didn’t think more drugs were the answer.
By the next day, the service provider had bought on an emergency guardianship hearing in the Administrative Tribunal, claiming Jimmy’s parents weren’t fit to care for him because they were refusing to provide him with medication.
Lukas and his wife had to appear before the tribunal the following day.
‘It was quite a scary moment … They can snap their fingers and bam, there’s a hearing the next morning. And that really concerned me … how much power, as a parent, can be taken away from me. And I don’t want the power to be in the hands of these people who pretty much advocate one line, and that’s just drug, drug, drug, drug.’
The tribunal found Jimmy’s parents to be capable guardians.
Lukas withdrew Jimmy from the group home and within six weeks was able to get him off the drugs, ‘inching it down’. They ‘exchanged the drugs for nutrition’ and ‘gave him a calm environment’.
Lukas found another organisation to provide in-house support.
‘Couldn’t believe the difference,’ Lukas said. ‘I have two fantastic support workers who are incredible … They really have this compassion and passion to help.’
Jimmy is now doing well. After leaving the group home it took a year and a half for Jimmy to leave the house. Now he goes out every day.
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.