For many years, autism advocacy in Australia has rightly focused on inclusion, acceptance, dignity and opportunity for autistic people and their families. That work remains deeply important.

At the same time, there is a group of families living with extraordinarily high levels of disability and support need whose experiences are too often missing from broader conversations about autism.

Some autistic people require lifelong, intensive 24/7 support across almost every aspect of daily life. Many are minimally speaking or non-speaking. Many have co-occurring intellectual disability, complex behaviours, epilepsy, or significant medical challenges. Their families are navigating a level of care that is constant, exhausting, and often deeply isolating.

Increasingly, both internationally and here in Australia, there is growing recognition that these experiences must be more clearly reflected in research, policy, service design and public conversation. At the Autism Association of Australia, we want to make sure that happens.

That is why we have established the Profound Autism Advisory Committee, made up of parents with lived experience of raising children with profound autism. They also bring decades of experience in advocacy, research and systems reform both professionally and personally.

The role of the Committee is simple but important: to ensure that the realities and needs of this cohort are always considered in our broader work across policy, advocacy, events, public messaging and community education.

"It's incredibly important that we focus on profound autism to support individuals who need around the clock support due to this condition As many as a third of people with autism actually have profound autism so it's not a small group. On a medical front, people with profound autism have for too long been overlooked, but with advocacy and supports this can change and provide benefits in terms of treatments and health savings.”
Professor Elisa Hill

Profound autism is currently the best available term to describe a group of autistic people with very high and complex support needs, and it is increasingly recognised internationally. For us, acknowledging this cohort is not about labels for the sake of labels. It is about making sure families are seen, understood, and properly represented in the decisions that shape their lives.

“While countries such as the UK and the US have begun giving profound autism a genuine seat at the table through dedicated research, targeted policy, and tailored funding, Australia has largely been absent from this conversation.

I believe it is time for Australia to catch up, ensuring that those with the highest support needs, and often the least ability to advocate for themselves, are no longer treated as an afterthought, but recognised as a priority at every level of decision-making.”
Jayani Samaranayake

As Australia’s independent peak body for autism families, we believe we have a responsibility to advocate for all of autism. That means recognising the full complexity of what it means to be autistic, listening carefully to lived experience, and ensuring no family feels invisible within the national conversation.

We are proud to be taking this step. Because every autistic person and every family deserves to be heard, supported and represented. All of autism. All of Australia. All the way.

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