Identity v disability: the great autism divide

An ideological debate is raging: Is autism a disability or part of a person’s identity? As the federal government beds down a new national autism strategy, the stakes are high.

Autism advocates are concerned about the direction of a new national strategy.

The Albanese government’s national autism strategy has reignited a highly charged debate over the nature of autism as a disability or simply part of a person’s identity.

Some key figures in Australia’s autism community warn the draft strategy released last week is ideologically skewed toward those who promote the “autism identity” approach, potentially putting at risk future support programs for higher-needs autistic people.

Leading autism advocate Katharine Annear goes so far as to say the draft national strategy “could have the perverse effect of erasing autism as a disability” with its confusing terminology.

And Autism Awareness Australia chief executive Nicole Rogerson said it “was aimed ideologically towards a subset of autistic people” and “overlooked the needs of those with more moderate and profound autism”.

But Clare Gibellini, co-chair of the national autism strategy oversight council that oversaw the content of the strategy, said the document had determinedly looked to include in its remit the experiences and needs of all autistic people.

The draft national strategy was released on Monday by Social Services Minister Amanda Rishworth, who said the final document “will be a whole-of-life plan for all autistic Australians”.

Social services minister Amanda Rishworth. Picture: NCA NewsWire/Martin Ollman

That is an ambitious statement, coming amid new reports that autism prevalence is now as high as one in 40 people, meaning as many as 675,000 Australians are likely autistic.

Their experiences are diverse. At one end there are T-shirts, books and hashtags proclaiming “Autism is my Superpower!”; at the other end there are parents dealing with non-verbal teens and elderly couples wondering what will happen to their autistic adult child when they die.

But there is a burning platform. As the draft strategy points out, autistic people have a life expectancy more than 20 years shorter than the general population and are nine times more likely to die of suicide. They are also eight times more likely to be unemployed. The strategy outlines a vision “for a safe, inclusive society (where) all autistic people are able to fully participate in all aspects of life”.

It focuses on outcomes relating to social inclusion, economic inclusion, diagnosis and services, and health and mental health, noting some autistic people identify as disabled and some don’t.

And it sets out “commitments” including getting more autistic Australians into jobs, or on to boards, and to change attitudes by “increasing visibility and representation of autistic people in media, sport and the arts”.

But there was little specific detail on measures to meet these commitments, with a final strategy and action plans to be agreed by the end of the year. Despite already receiving more than 2000 submissions ahead of the draft’s release, the government has offered a further eight weeks of consultation to the end of May.

And the document contained only passing reference to the key issue of national cabinet’s agreement in December to build “foundational supports” for those with less severe disabilities outside the NDIS, including many children with autism.

The lack of detail, and the language of identity that permeated the draft strategy, has left open questions about whether it will address the needs of all autistic Australians. That as it highlights helping more white-collar autistic adults on to boards it has left more fundamental issues, such as schooling, early childhood and justice, off to the side.

Katharine Annear said the draft strategy’s authors seemed to struggle with the idea that autism is a disability, putting it at odds with the international autistic rights movement: “The whole document is ideologically confused. There is confusion between the social construct of autistic identity, the terminology of neurodiversity, and the diagnosis of autism. These things are not one and the same,” she said.

“That idea of autistic identity is not really accessible to marginalised people who may live in institutions, or people who don’t share dominant culture or use social media. They aren’t having a discussion with themselves about identity versus disability.

“What does the new draft strategy offer individuals whose needs are significant in terms of daily care and safety?”

Ms Rogerson acknowledges the different views about how the condition should be described – either through identity or disability. But she is worried the strategy has the balance wrong.

Autism Awareness Australia CEO Nicole Rogerson.

“I fear that this strategy has overlooked the needs of those with more moderate and profound autism, and glossed over some of the most significant challenges that remain for autistic Australians,” she said. “It feels like the strategy is scared to address the real challenges. We all want autism understanding and acceptance … but we also need real solutions and a strategy we can execute on to make a difference in people’s lives. It seems to be aimed ideologically towards a subset of autistic people and I fear that this strategy doesn’t address the needs of autistic people who require a lot more assistance.”

Ms Gibellini disputes the lack of focus on any one group of autistic Australians, but concedes the sector may have been expecting more detailed actions.

“The views of people with autism who don’t identify as being disabled are just as valid as someone like me who proudly says they have a disability. The draft strategy acknowledges these different perspectives and we welcome feedback from everyone,” she said. “I can understand some people would have liked to see the strategy recommend specific actions for those with more complex needs. I expect they will likely be more comfortable when they see the final strategy.

“We didn’t want to put out a completed strategy without further feedback from the community that this strategy belongs to, and views around further supports or actions are welcome. It’s important to remember that this is the very first strategy of its kind, and we have to start the conversation somewhere.”

Australian Advisory Board on Autism chair Jacqui Borland agreed the “high level” commitments aligned with the needs of those across the autism spectrum, but said the more detailed action plans to be developed from here will need to build in supports for people with complex needs.

“We know every autistic person is unique and support needs will differ for different people, and for each person at different times of their lives,” Ms Borland said.

“The strategy is as it needs to be, at a high level. Those commitments around social and economic inclusion, and supporting health and mental health, apply to all autistic people. The plans to be made from here, co-designed with the autistic community, must be detailed enough to meet the requirements of people with high and complex needs.”

In an article for The Conversation, autism expert Andrew Whitehouse, from the Telethon Kids Institute, also raised concerns about the jurisdictional limitations of the strategy, which is being developed independently of state governments even though they control a number of key functions – such as education – where urgent action is needed.

Ms Rogerson agreed. “Improvements in social and economic inclusion are important outcomes but how will we get anywhere near that if we don’t have a strategy for autistic students floundering in our education systems? We know from our own survey that 35 per cent of families experienced being discouraged or refused enrolment for their autistic child.”