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Think Autism panellists on the health data that could end trial and error care
In short
Asked what they would build with unlimited resources, a panellist at Think Autism Sydney in May 2025 called for a large unbiased dataset to end trial and error care. Another, speaking as a health professional, said it was coming, slowly.
Read it instead, 4 minutesThe transcript
The story
Anita Aherne, hosting a panel at Think Autism Sydney on 31 May 2025, asked the four entrepreneurs with her what they would build tomorrow if they had unlimited resources, and invited anyone to answer. The first response came from a panellist who said they had an answer the room might not share. The frustration, the panellist said, was the lack of knowledge and the lack of understanding. People in the community always say that if you meet one person with autism you have met one person with autism, and yet “we are still so far behind in understanding how it shows up for different people”.
The panellist described that gap in personal terms. With both of their children, “it was trial and error for years”, and the panellist was still working through it. One child had a very difficult road. The other now had an incredible quality of life through a lot of personalised care, but getting there was hard. Parents want to help and do not know what the right things are, the panellist said, because there are so many options and the evidence does not settle them. “You can find five papers that say something’s helpful and you can find five papers that say it isn’t.”
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Sources the story draws on
- Human Health raises $8.5 million to fix broken healthcare systems (opens in a new tab), Forbes Australia (Anastasia Santoreneos)
- Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study (opens in a new tab), BMJ Open (Doherty, Neilson, O'Sullivan, Carravallah, Johnson, Cullen and Shaw)
- Better access to health information (opens in a new tab), Australian Digital Health Agency (digitalhealth.gov.au)
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