‍Calling for Clear-Eyed Courage on Profound Autism

By Tim Pryde

Australia is at a crossroads. While global research bodies and major advocacy organisations have moved decisively toward recognising profound autism as a distinct and essential category, Australia continues to avoid the term — not because the evidence is unclear, but because the politics are uncomfortable. And that avoidance is costing the most vulnerable autistic Australians the visibility and support they urgently need.

The question now confronting policymakers is simple: why is Australia refusing to name a cohort that the rest of the world is already acting on?

International consensus is compelling. The Lancet Commission (2021) defines profound autism as individuals who are non-verbal or minimally verbal, have an IQ below 50, and require 24/7 supervision. The US Centers for Disease Control and Prevention (CDC, 2023) reports that 26.7 per cent of autistic eight-year-olds meet this definition. At INSAR 2025, a global Delphi consensus process was launched to formalise this classification further, with researchers warning that profoundly autistic individuals are becoming increasingly underrepresented in research despite having the most complex needs. 

Profound autism is defined as a form of autism characterised by minimal or no functional communication, significant intellectual disability, and the need for lifelong 24/7 support (Lancet Commission, 2021).

Australia has its own evidence. A 2025 study of 513 autistic children assessed through a large  multidisciplinary public diagnostic service, found that approximately 24 per cent met the ‘at risk’ profound criteria. The researchers recommended integrating the category into national diagnostic guidelines.

The Australian Bureau of Statistics (ABS, 2022) reports that 73 per cent of autistic Australians have a profound or severe limitation. Nearly 60 per cent had a profound communication restriction. Almost half had a profound limitation in self-care. These are not marginal needs. They are the defining features of profound disability.

Australia is already measuring this cohort. It simply refuses to name it.

This contradiction is most visible in the National Autism Strategy. The Strategy’s glossary defines “Autistic people with very high support needs” using the exact criteria for profound autism: minimal or no functional communication, profound adaptive impairment, and lifelong 24/7 supervision. Yet the Strategy’s “Statement on Language” bans the term profound autism entirely.

The result is a policy framework that recognises profound autism in substance but refuses to acknowledge it in name. This is not a harmless linguistic preference. It is a structural barrier to accurate data collection, targeted service planning, research inclusion and policy accountability. A cohort that cannot be named cannot be measured. A cohort that cannot be measured cannot be planned for.

The preferred substitute — “very high support needs” — describes the supports, not the condition. It treats profound autism as an “intersection” rather than a core neurodevelopmental presentation. It obscures the lifelong, pervasive nature of profound disability and hides the distinct clinical profile behind generic language. Avoiding the term does not reduce stigma. It reduces accuracy. And accuracy is the foundation of equitable policy.

The consequences are already visible. When profoundly autistic individuals are merged into “autistic averages,” critical differences disappear — including life expectancy, epilepsy prevalence, communication barriers and safety risks. 

Policy design suffers too. The Strategy’s heavy emphasis on neurodiversity-affirming language has value, but it has also resulted in a single ideological lane dominating a highly heterogeneous population. Profoundly autistic people are under-represented in co-design, their needs diluted in policy, and their families sidelined in governance. Their lived reality is softened or erased in official language.

This is not equality. It is erasure.

Australia now has a choice. It can continue to avoid the term profound autism, or it can align with global evidence and act with clarity and courage. The path forward is clear:

• Adopt the term “profound autism” in research, policy and service planning.
• Update the Autism CRC National Guideline to incorporate the internationally aligned definition.
• Commission national prevalence reporting, as the US CDC already does.
• Ensure representation of families of profoundly autistic individuals in all governance bodies, including the National Autism Strategy Reference Group.
• Develop dedicated pathways in the NDIS and state systems, recognising that profound autism requires specialised, intensive, lifelong supports.

The people who need this change cannot ask for it. They cannot write submissions, attend consultations or advocate for themselves. Their exclusion from co-design is not a sign of low relevance — it is the very reason they require explicit recognition.

Australia prides itself on fairness. But fairness requires clarity. And clarity requires courage.

It is time to show it.

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Sources

• The Lancet Commission on Autism. The Lancet, 2021
• US Centers for Disease Control and Prevention (CDC). Autism prevalence data, 2023
• Australian Bureau of Statistics (ABS). Disability, Ageing and Carers, Australia, 2022
• INSAR Global Delphi Consensus on Profound Autism, 2025
• Hodge MA, Boulton KA, Sutherland R, et al. (2025), “Clinical Features of Children at Risk of Profound Autism,” Journal of Autism and Developmental Disorders

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