The National Autism Strategy is urgently needed. Does the government’s new draft do enough to help those in crisis?


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Shutterstock/Da Antipina



The Australian government released its draft National Autism Strategy yesterday. It aims to power a “coordinated national approach, supporting Autistic people at each stage of life”.

The strategy is the fulfilment of an election commitment by the Albanese government, which was met with great optimism by many in the Australian community at the time.



The strategy was co-designed after consultation with more than 2,000 autistic people, families, carers and researchers. It follows the lead of South Australia which released a strategy and appointed an assistant minister for autism in 2022.

Now focus shifts to whether the draft strategy – open for public feedback until the end of May – fulfils the hopes of the community.

Why a national autism strategy?​


The prominence of autism in Australia has grown considerably. Increased awareness has been a key factor behind the surge in the prevalence of autism diagnosis in Australia, estimated to be at least 3.2% of school-aged children.



Autistic Australians have among the poorest life outcomes in Australian society. As reported in the draft strategy, the life expectancy of autistic Australians is on average more than 20 years shorter than non-autistic Australians. They are nine times more likely to die of suicide and they experience higher rates of physical and sexual abuse.

There is an urgent need to turn these horrifying statistics around.



Governments contribute to each person’s life through early childhood programs, education, employment, the health and justice systems, to name just a few functions. A whole-of-government strategy is important because it focuses all departments on the same goal.

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Early childhood support is vital for autistic people. Shutterstock/Arlette Lopez​



Who is involved?​


The National Autism Strategy is being developed by the federal government, guided by an oversight council of sector representatives, predominantly members of the autistic community. This is a great strength of the development process, which also involves working groups in key topic areas.

But the fact the National Autism Strategy is being developed independent of state and territory governments constrains it. The strategy can’t include commitments about functions under state and territory control. Unfortunately, it is these areas in most need of urgent action.



Education systems are struggling to meet the demand for the growing number of autistic students coupled with our expectation of inclusive classrooms. There is an acute shortage of safe housing options for generations of autistic Australians who are either in adulthood or approaching it. Autistic Australians are encountering the justice systems at high rates, with evidence they receive longer sentences than non-autistic Australians.

The administration of education policy and public housing rests with the state and territories, and the vast majority of Australian prisoners are convicted under state and territory laws.



The potency of a strategy unable to guide government commitment on these most urgent issues is diluted from the start.

What does the strategy include?​


The draft strategy proposes 24 commitments across key areas such as:



  • social inclusion
  • economic inclusion
  • diagnosis
  • services and supports.
The commitments are structured around the human rights of autistic Australians, and their rights to accessible and inclusive environments that meet their needs.



The draft strategy calls for public education campaigns about autistic Australians in the workplace, facilitating meaningful employment opportunities, and improving access to quality and timely supports that nurture autistic identity.

It also calls for greater leadership and active involvement of autistic Australians in related policy and accountability mechanisms.



But there is room for improvement​


Even within a scope that is constrained to the roles and responsibilities of the federal government, there were a range of urgent issues not addressed within the draft.

Autism is an area that has historically been plagued by non-evidence based therapies and supports. Improving this evidence base is a key priority to ensure the safety and effectiveness of supports for autistic individuals, but currently the strategy remains silent on this.



Neither does the strategy touch on early childhood education and care (such as child-care subsidies and preschool funding) or aged care, both of which are largely federal responsibilities. Quality support and inclusive policies at these vulnerable and highly impactful times of life are critical to meeting the human rights of autistic Australians.

Even where states and territories have primary jurisdiction, the federal government can still play a major role in leading change. For example, the federal government can strengthen the justice system by creating diversionary programs for autistic individuals, which could avoid situations such as the recent encouragement of a 13-year old autistic boy in his fixation on a terrorist organisation by an undercover federal agent.



Similarly, while education policy is set at the state and territory level, the federal government is a significant contributor to school funding. A strategy that included a commitment to adequate investment for schools to promote inclusive classroom policies would be a system-changing commitment.

‘Right now. life outcomes for autistic people are worse than they should be.’​



Is the draft National Autism Strategy a game-changer?​


The draft National Autism Strategy includes an array of commitments that represent a critical step forward for the understanding, inclusion and empowerment of autistic Australians. This is an important document, which marks a celebratory moment for Australia.

However, its title of “National Autism Strategy” implies an ambition the terms of reference mean it could never meet.



Many of the truly thorny challenges that plague autistic Australians – reduced life expectancy, inadequate housing, educational exclusion and underachievement, unemployment and underemployment, experiencing higher rates of physical and sexual abuse – cannot be solved by one government alone.

This work requires the hard grind of all levels of governments working together across multiple generations to integrate and evolve complex systems. Alongside a top-down strategy, the goal of a coordinated approach could be better met by National Cabinet, which brings together the prime minister and the state premiers and territory chief ministers.



All it takes now is the will.

This article was first published on The Conversation, and was written by , Andrew Whitehouse, Bennett Chair of Autism, Telethon Kids Institute, The University of Western Australia

 

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Wow. So many Australians are affected by Autism. My grandson has it too. It's not a walk in the park for him or his parents. We love him so much.
 
As a 64-year-old widow, I have not been eligible to get an Autism diagnosis due to being an adult, over the age of 25. After a lifetime of being on multiple waiting lists where I've been dropped as the service has been discontinued due to various reasons, including the death or relocation of the provider, I still remain undiagnosed and therefore unable to gain any access to NDIS or other Autism services.
There is not one psychiatrist in the State Of Victoria available using bulk billing and I am unable to pay the full cost of an official diagnosis without bulk billing which, on average, is around $3,000-$5,000.
My medical and psychological needs are not taken into consideration, the assistance I need is out of my reach, all because I am over the age of 25. Similar local services are not available because I am under the age of 65.
I am under palliative care with stage 4 bone cancer. Services like yard maintenance are unavailable and the grass keeps growing, I can't afford to pay anyone to maintain it, and this is only one of my many needs.
A diagnosis of Autism would mean that I would be eligible for NDIS, they won't touch me without it, and I'm not eligible to get a diagnosis. So I have spent the last 20+ years, in a vicious cycle of being invisible and unable to get the help I need.
I seriously doubt that there will be any changes that will include adult assistance for those, like me, who have not been able to get the golden ticket of an official diagnosis. If you are over 25 years of age and don't have thousands of dollars to pay for a diagnosis, there is nothing and no one who can help.
 
Wow. So many Australians are affected by Autism. My grandson has it too. It's not a walk in the park for him or his parents. We love him so much.
I can fully relate. Two grandsons assessed and diagnosed with Autism and a granddaughter who hasn’t been assessed, but is obvious she is on the spectrum; high functioning.

They are all wonderful people and much loved as are all of my grandchildren.
 
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