Lawson, Asa and Clarisse
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Lawson and his younger brother Asa are autistic.
About five years ago Lawson, then almost two, stopped sleeping.
‘He would only eat white things,’ his mum Clarisse told the Royal Commission. ‘He didn't like his hands dirty and we had no idea about what this was.’
At the time, Clarisse was living in the city and doctors told her Lawson would grow out of it.
Clarisse struggled to care for him and Asa, still a baby.
‘We got to a point where I was losing my mind, like literally, so I had to relocate with my two little ones to [a remote community] to live with my mum.’
The community clinic suggested Lawson was autistic, and an allied health team provided support while he waited to be assessed.
‘It took us to go to a remote community for someone to say, “Hang on, your son is different. Why don't we get some more support for you and get this testing done?”’
However, it took two years to get all the testing done.
‘Back then, it was a two-and-a-half-hour drive … and that included 90 kilometres of dirt road. I had to drive in for the assessment, drive back out and then drive back a few weeks later.’
At first the doctor diagnosed Lawson with global development delay. ‘Luckily’, Lawson had a meltdown in his office one time – the doctor realised Lawson was autistic and changed his diagnosis.
The doctor assisted with the NDIS application process, submitting all the required documentation.
While they waited the allied health team provided support. They ‘were amazing’ and ‘got [Lawson] speaking’.
When Lawson’s NDIS funding was approved, the allied health team’s support ceased because they were funded by the state government.
‘We had all this funding with the NDIS, but the only thing that we actually received … was with [therapy], which was four sessions a year. There's no respite services, there's no further testing, there's no classes that I could take.’
Asa, now two, started ‘displaying behaviours’ similar to Lawson. Clarisse spoke to the visiting paediatrician who referred Asa for testing.
‘Because my oldest had already been diagnosed, the path to get my second son diagnosed was way too easy … It was then trying to get him on to the NDIS that was the problem, because the system had changed.’
It was the parent’s responsibility to make the application and submit the documentation.
‘Trying to get all of these documents together from all these different organisations and these doctors, it was a mission. I was having a meltdown myself.’
Clarisse felt she had to move to a regional city to get the help she needed.
Initially things improved. She submitted Asa’s NDIS application and found an organisation to provide occupational therapy, speech therapy and a social worker for Lawson.
But there was a high turnover of therapists, support coordinators and support workers. Support was unreliable and inconsistent. Communication was poor.
‘There’s always a middleman. We don't actually speak directly to the people who are organising the stuff for our kids.’
When Clarisse did manage to speak to staff they were rude. Clarisse refused to deal with one woman who spoke to her ‘like [she’s] a “dumb black fella”’.
By the time Lawson started school, supports were still not in place.
‘It got to the point where the school got involved and the school called a meeting for everyone to pull their heads in and actually start supporting the boys.’
Clarisse said the school has been very good to both boys, and for the first time there is support.
‘There needs to be a lot more support with diagnosis and more education on identifying these things.’
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.