Ill-informed debate over eligibility and arbitrary line-drawing through the autism spectrum is the result of years of neglect of autism research and a failure to engage with those who had the answers. It was a perfect storm waiting to happen, and the gales have now blown in.
When our son was diagnosed as autistic in 1996, my husband was the deputy prime minister of Australia. Socio-economic privilege? We were definitely at the top of the list. I left the pediatrician’s room with a diagnosis, a screaming three-year-old child, a three-month-old baby and a photocopied A4 piece of paper with stick figures on it. That was it. I was on my own to negotiate the rest. We are a fortunate family, educated and connected, with access to support and resources beyond many, and yet it took every ounce of our being to create a pathway for our son to find his place in society. Multiple schools, mental health episodes, hospital stays, bullying and all that goes with being extraordinary in a society that prioritises the ordinary.
Harrison is now 24, a truly beautiful young man in every sense working as an education assistant at a local primary school, loved by his work colleagues and community alike. An active participant in his local church and neighbourhood, chess club convener and footy tipping manager, he is now a taxpayer with a superannuation account. He is still autistic, very autistic and proudly so. He still needs a small amount of support to manage independent life, yet as we see so often in the autistic community, small investments deliver large rewards.
The modelling has been done. The Productivity Commission, the Harvard Business Review, Curtin University and other broadscale studies tell us the true story of moving people with disabilities from welfare to work. Programs such as the Autism and Agriculture project, Specialisterne and corporates such as DXC, ANZ and Westpac have shown that with appropriate support and individualised recruitment, autistic adults can move from long-term unemployment to becoming valuable employees and taxpayers. This is the difference between a social insurance model and a welfare model, poorly understood by many of the commentators on this issue.
It is what the original vision of the NDIS imagined — a focus on early diagnosis to set up a pathway, appropriate evidence-based interventions, capacity building of educators and health professionals, and enhanced community access to prevent another generation of autistic adults being isolated and welfare-dependent. There is no bigger bang for your buck than to invest in autistic people. They are the change-makers in our world who bring diverse thinking and richness to our communities and businesses. Of all the different ability groupings covered by the NDIS, it is autism that will reap the greatest rewards. It is still possible.
However, after the hurt and confusion caused by the “new rules that were not new rules”, it will be difficult to arrest the sensationalist reaction. I wonder where the government and opposition are in all this. After the previous scare campaign around the full funding of the NDIS at budget time, again largely directed at the autism community, they are remarkably silent on how they will make their proposed $22 billion annual investment work. Vulnerable Australians expect better from their elected representatives.
The NDIS appears to be lost as to what to do next. An edict of cutbacks and a new focus on economic rationalism has exposed the neglect of governments at all levels in acknowledging the numbers of autistic children and adults in our communities, and attempting to understand their needs. A step back is not possible, the previous piecemeal state and territory funded programs are long gone, but the future planning has not occurred.
To this point, consultation with the autism and autistic community on what might be needed to make this multibillion-dollar investment of your money deliver for you, the Australian community, has been next to nil. Since the inception of the NDIS, autism advocates and organisations have been pleading for engagement and consultation in defining the rules and ensuring the focus of investment is on the areas of most need so that they deliver the best outcomes across the lifespan.
About 30 per cent of NDIS recipients are on the autism spectrum and yet no expert advisory group informs decision-making. However the NDIS and the minister are in luck. A contractual arrangement exists with the groundbreaking Co-operative Research Centre for Autism on creating a national diagnostic guideline and this could easily be expanded to assist in providing an evidence base to underpin decision-making. In addition, the New Australian Autism Alliance has brought together researchers, service providers, peak bodies and autistic people around the same table, working collaboratively on issues fundamental to the roll out of the NDIS.
It seems logical to build this future together so that, where possible, taxpayer dollars are invested in a way that moves people from a lifetime of welfare to a full and meaningful life.
We are ready to start work when you are.
Judy Brewer is chairwoman of Amaze and former chairwoman of the Autism Co-operative Research Centre.