Jayson
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.
Jayson is in his 50s and lives with Asperger’s syndrome and obsessive-compulsive disorder.
Jayson played the trumpet at his meeting with the Royal Commission.
‘I have realised that I communicate a lot better with my music than with English. So that's been a huge learning curve, a great, fun learning curve to be able to communicate with music.’
Jayson was diagnosed with Asperger's syndrome about 10 years ago.
‘And that was the first official time that I could actually identify that I had autism, Asperger's syndrome. Through my schooling I had huge difficulties in learning for understanding.’
Jayson described his brain as ‘like a washing machine … and all of the information gets jumbled up’.
‘It's been only recent times I have realised that, as well, but it gives me a sense of who I am.’
For the past few years, Jayson has received eight hours a week of cognitive therapy funded by the NDIS.
‘I still have huge difficulties in developing, say, close relationships, friendships, and I'm working on all of those sorts of things.’
Part of the funding helps him attend meetings of a stroke support group, where he plays the trumpet.
‘This is a bit weird playing this at least once in the session, playing Happy Birthday. Why I play Happy Birthday is … everyone remembers the words to Happy Birthday so they can sing along … it gets my neurons and gets my brain working and that is so important. It connects me with people.’
Recently, the NDIS reduced Jayson’s funding package and provided no money for cognitive disability support. Jayson appealed and the NDIS reinstated the funding, but Jayson said it left him with ‘grave concerns about their lack of understanding of cognitive disability’.
‘If I want to be blunt and honest, I would say many of these people haven't got a clue about cognitive disability, which further increases the discrimination to people like me with my cognitive disability and it's, well, I feel that it's, what's the word? I just feel further discriminated against on many, many levels.’
Jayson said people often thought he had ‘a mental illness or even an intellectual disability’.
‘So, hugely misunderstood and this is talking about obviously a huge gap for people with Asperger's, with autism and other cognitive disability … As I said at the beginning, it's like a washing machine with all of the information spinning. That is an important point to get across to people to start to understand me. If they can see that I live in a state of confusion, it's a big start.’
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.