My heartfelt thanks to Senator Jordon Steele-John and Emily, his Policy & Parliamentary Advisor, for truely listening and then taking action. The Senator raised formal Questions on Notice to the Australian Senate, questions the government had to answer, about the Autism Health Roadmap, access to diagnosis, the state of healthcare and system co-design for and by Autistic people.
These questions matter. They ensure that the experiences of our community are not ignored or forgotten. They turn our stories into policy accountability.
Before the last election, it was a secured commitment from government to fund the Autism Health Roadmap. That promise was built on years of advocacy, the design of a 10 year Health Roadmap, countless meetings and the Autistic people who shared their stories during consultations. To see that commitment now abandoned is not only disappointing; it is a breach of trust to our community.
When government chooses not to fund the Autism Health Roadmap, the message we receive is painfully clear:
Our lives, our healing is not even worth the change you would find at the bottom of your pocket.
That truth hurts. Because this roadmap isn’t just policy it represents hope. It’s a promise of accessible diagnosis, coordinated care and health equity for Autistic people across Australia.
We know from decades of research that Autistic people face severe health inequities and we lose decades off our life expectancy. Studies show that Autistic people are more than twice as likely to die prematurely, with an average life expectancy more than 20 years shorter than the general population. This isn’t because of autism itself, but because of barriers to healthcare, misdiagnosis, discrimination and chronic stress from navigating systems not built for us.
There is one encouraging sign. The review of Medicare items is finally underway, after long-standing advocacy for unrestricted access to diagnosis. Autistic people deserve timely, affordable, and appropriate assessment no matter how old we are.
But still, there’s no data on wait times. Without data, there’s no visibility. Without visibility, there’s no accountability. And without accountability there can be no progress.
Change takes persistence, and it also takes people willing to ask the questions like Senator Steele-John and Emily who are helping us to push for a system that values our lives and honours its promises.
Until that funding is delivered, just have to keep asking.
Further Reading
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Autism CRC (2024). Mortality and cause of death for Autistic Australians. https://www.autismcrc.com.au/news/latest-news/mortality-and-cause-death-autistic-australians
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Parliament of Australia (2022). Services, Support and Life Outcomes for Autistic Australians — Senate Report. https://a4.org.au/sites/default/files/2022-SenateAutism-ServicesSupportandlifeoutcomesforautisticAustralians.pdf
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University of Cambridge (2023). Autistic individuals have poorer health and healthcare. https://www.cam.ac.uk/research/news/autistic-individuals-have-poorer-health-and-healthcare
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University of Technology Sydney (2024). Research priorities for autistic girls, women and gender-diverse people. https://www.uts.edu.au/about/faculties/health/public-health/research-projects/autistic-women-and-girls-research-priorities
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Doherty, M., et al. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: Cross-sectional study. BMJ Open, 12(2), e056904. https://bmjopen.bmj.com/content/12/2/e056904
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The Lancet Commission (2025). Advancing Health-care Equity for Autistic People: Mental Health as a Key Domain. The Lancet. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2825%2900667-1/fulltext
Author Note:
Monique Blakemore is an Autistic advocate and policy advisor who has spoken on five continents about inclusion, justice, and lived experience. She was part of the small advocacy team that secured the government’s original commitment to the Autism Health Roadmap.
