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Debate, Autistic Pride Day Symposium 2024
Profound autism, unheard carers and the fight over who is really autistic
In short
A question about profound autism at the 2024 Autistic Pride Day Symposium in Melbourne drew a warning about consensus, a defence of carers, and a live account of what the term did to Kyriakos Gold.
Read it instead, 5 minutesThe transcript
The story
The question came from a participant, and it took the panel back to its earlier discussion of treatment. The participant told the Melbourne panel of the 2024 Autistic Pride Day Symposium, on 8 June 2024, that they had attended an autism research conference a few weeks earlier with a session on profound autism. That speaker, the participant said, had argued there was too much emphasis on autistic people at level one support and not enough on level three, and that perhaps the language for level three should lean toward treatment and the language for level one toward support. The participant asked the practitioners on stage for their view.
Dr Judy Tang, a neuropsychologist, said the question had found the literal crossroads the health professions were standing at. It was an awkward position to be in, she said, and she expected it would take a year or two or three for the professions to reach a proper consensus, adding that this was the nicest way she could put it. Another speaker agreed with Tang and acknowledged how strongly many in the autistic community feel about these conversations.
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Sources the story draws on
- First of its kind commission defines profound autism, issues recommendations (opens in a new tab), The Transmitter (Spectrum)
- Open letter to the Lancet Commission on the future of care and clinical research in autism (opens in a new tab), Autistic Self Advocacy Network, for the Global Autistic Task Force on Autism Research
More from Autistic Pride Day Symposium 2024
All 94-
1 minute 45 seconds, captioned Mental health professionals had a lot of unlearning to do, Dr Judy Tang said Dr Judy Tang On the Melbourne day of the 2024 Autistic Pride Day Symposium, the neuropsychologist named the diagnostic checklist as part of what she had to unlearn. A practitioner on the panel located innovation in that unlearning. -
2 minutes 28 seconds, captioned Naomi Malone said allies could meet autistic people halfway across the bridge Dr Naomi Malone, Kyriakos Gold Asked in Melbourne in 2024 whether practitioners need lived experience of autism, Dr Naomi Malone said it was valuable but not essential, and offered an image of allies on a bridge. Kyriakos Gold replied that autistic people had walked it all. - 4 minutes 59 seconds, captioned Two psychologists told the symposium they would rather talk about support than treatment Kyriakos Gold, Dr Judy Tang and 1 more When Kyriakos Gold told a Melbourne panel in 2024 that he did not want to be treated, Dr Judy Tang and Dr Naomi Malone explained why their professions were moving away from the word.
- 9 minutes 53 seconds, captioned A practitioner said autism assessment had more entry points but no gold standard Kyriakos Gold At the 2024 Autistic Pride Day Symposium in Melbourne, practitioners defined holistic care, said neuroaffirming practitioners were getting easier to find, and named what the system still lacked.
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6 minutes 30 seconds, captioned Sharon Zivkovic said autistic expectations had risen and called it a social movement Dr Sharon Zivkovic, Christina Chun Opening the closing session of the 2024 Sydney symposium, Dr Sharon Zivkovic said the bar for future autistic lives had been raised in two years. Participants then described what the two days had meant to them. - 3 minutes 44 seconds, captioned Stigma is the biggest barrier to autistic employment, Sandra Thom-Jones argued Sandra Thom-Jones At the 2024 Autistic Pride Day Symposium, the researcher told an employment panel that autistic people lose out at every stage of work because of what others believe about them.