$42m for first national autism strategy
Autistic Australians have some of the poorest life outcomes. This plan is designed to change that.
Labor is investing $42m in a nation-first plan to improve the lives of autistic Australians, with a new push to give neurodiverse people more peer support and boost scientific research into how to help people with the condition.
Autistic people in Australia have some of the poorest outcomes when it comes to life expectancy, education, and inclusion. This strategy, to run until 2031, is designed to change that.
It includes almost $20m over four years for a peer support program, $915,000 to boost community awareness and education of autism, and $12.2m over five years to ensure there is more academic research into neurodiversity. That research will then be used to improve policies and services related to autistic people.
The sheer existence of the strategy is described as “huge” by autistic woman Clare Gibellini, a co-chair of the National Autism Strategy Oversight Council, which helped advise the government on its development.
“It’s recognition that we have unique needs,” she said. “The research shows us that we have poor outcomes in many areas of life, so this is a significant way to recognise that and that it’s time to do something about it. The autistic community has been left behind in many ways.”
Ms Gibellini always suspected she was autistic, but did not get a formal diagnosis until she was 40. That was due in part to stigma, difficulty being taken seriously by healthcare professionals, and the financial barriers associated with the high cost of getting a diagnosis in the first place.
She suspects she would have experienced better educational and financial outcomes throughout her life had she been diagnosed earlier. She hopes the strategy prevents the same thing happening to future generations.
“I probably wouldn’t have experienced some awful discrimination that I’ve experienced in the health system as a parent,” she said. “I’m really hopeful that this strategy now sets the next generations on the right path towards better outcomes. Particularly for women and gender-diverse people who don’t necessarily fit the norms that the diagnostic criteria was built on.”
The strategy makes 22 recommendations and is underpinned by four key areas: social inclusion; economic inclusion; diagnosis, services and supports, and; health and mental health.
Its aim is to break down the barriers autistic people face in everyday life. To do that, the government has committed to improving the data used to inform policies and address gaps in knowledge.
Alongside the strategy is a two-year action plan that will outline more practical short-term steps to deliver on those outcomes. The idea is for the plan to be evaluated and updated throughout the life cycle of the strategy.
The need for a national autism strategy is clear. According to government data, autistic people have a life expectancy 20-36 years shorter than the general population, the unemployment rate is almost eight times the rate of people without disability, they’re less likely to gain a bachelor degree, are 2½ times more likely to experience depression, and have a high instance of suicidal ideation.
The strategy and plan will be released by Social Services Minister Amanda Rishworth in Perth on Tuesday. “This is the first Australian government strategy dedicated to improving inclusion, support and life outcomes for autistic people across Australia. Along with, of course, building community understanding and increased knowledge of the ways we can all adjust to ensure our world is inclusive of the autistic community,” she said.
Ms Rishworth said the strategy is designed to improve the lives of the almost 300,000 autistic people living in Australia. “Addressing the barriers autistic people face in areas like education, employment and diagnosis is long overdue, and we are proud to deliver a strategy that will change lives for the better,” she said.
In practical terms, it is hoped the strategy will also make it easier and more accessible for people to get health assessments and improve the diagnosis process. There will also be a focus on mental healthcare, though details of that will be included in the Department of Health and Aged Care’s National Roadmap to Improve the Health and Mental Health of Autistic People, which is yet to be released.
Jenny Karavolos is a member of the Oversight Council, a co-chair of the Australian Autism Alliance, and identifies as neurodivergent. She says the strategy is the first to focus solely on autism. “Its focus, the vision and its goal is that it’s for all autistic people. So having finally a strategy that will focus purely on autism and not a subset of something else is so significant in order to where we started from when we were campaigning in 2022.”
While the plan is not perfect and does not cover every issue of concern for autistic people, she says it lays a foundation for improvement.
“Because there’s an action plan for the first year, there’s lots of opportunities where people … can be part of shaping the autism strategy further” Ms Karavolos said. “But of course, I’m going to accept it is such a broad gambit of what needs to be addressed, I’m sure there’ll be disappointment, but we will be there to support our community and make sure the government meets what the intent of the National Autism strategy is.”
One concern raised after the release of the draft national plan was that the strategy does not address concerns around housing or education to the degree hoped, because those areas are the responsibility of the states and territories.
Defining autism is difficult because the experiences of it are so varied. It is a lifelong neurodevelopmental condition that affects how a person’s brain develops and functions. Some autistic people might find it more difficult than the general population to navigate social settings and regulate their emotions, and they may be more likely to experience intense or focused areas of interest.
But it’s also that way of thinking that has become appealing to many businesses in recent years, especially those in the more creative and technology-heavy industries.
“The fact that we don’t see things in the same way as others, people are starting to recognise that that could be a huge strategic advantage for their businesses,” Ms Gibellini said. “The fact that we are already living, breathing, working, existing in a society that isn’t built for us means that we are already working in agile, flexible and creative ways just to get through the day. Who doesn’t want that in their workforce?”
Those with lived experience hope the strategy will also mean more parents, who have taken on informal carer roles to provide support to their children, will be able to return to the workforce.
“There’s so many talented autistic people who drop out of their profession because supports aren’t appropriate,” Ms Karavolos said. “It’s not a lifestyle thing, it’s just removing barriers.”
The strategy’s launch also comes at an important time for disability support in Australia, as the government faces pressure to rein in spending on the NDIS. Many are concerned about how any changes to the scheme could impact autistic people.
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