Why profound autism needs its own conversation. 

When most people from outside our community hear the word autism, they tend to picture the same narrow images: the quirky genius, the tech innovator, the highly verbal child with unique interests courtesy of TV shows like Love on the Spectrum, Employable Me, Austin, The Assembly, and The Good Doctor. Of course, these personas and representations of autism are quite real and perfectly valid. 

However, the proliferation and dominance of these “fit for consumption” autistic voices had unintended consequences: the silencing of others who are on a very different part of the entirely non-linear and always diverse multiverse also known as, “the spectrum”. Way out in the foundation of the spectrum that nobody likes to really talk about, you’ll find severe and profound autism territory. It’s isolating, it’s lonely, it’s hard, and frankly, it’s time we had our own conversation with Australia about it. 

What is Profound Autism?

Take everything you’ve ever heard about autism “levels” and park them to the side for a moment. Profound autism doesn’t exist on a sliding scale of fluctuating disability. It describes autistic people who have the very highest, and most complex lifelong 24/7 care needs.

Many profoundly autistic people are non-speaking or minimally verbal. Most have the co-occurring effects of intellectual disability and complex health conditions. Daily life often includes a range of behaviours of distress and safety risks. Consequently, diligent, comprehensive, person-led care is required around the clock each and every day, week, month and year of their lives for as long as they live. 

The Australian Bureau of Statistics reported that 73% of the Australian autism population self or caregiver reported experiencing “profound or severe limitations”. The distinction between “profound limitation”, and profound autism is critically important to understand. Unfortunately, the data that makes this distinction is unavailable. 

For the last decade, public conversation has been increasingly dominated by the most articulate, independent, and visible autistic voices. While there’s no question that their perspectives matter deeply, but they don’t reflect all of autism, or the whole story.

Families and caregivers supporting someone who is profoundly autistic regularly describe their invisibility in mainstream advocacy as they navigate broken systems across health, education and the NDIS. These are families for whom crisis is a constant, and adequate resources, support and community feel increasingly out of reach.

When these voices aren’t included in the broader discussion, policies risk being shaped without them — leading to services and systems that woefully miss the mark and leave our most vulnerable autistic cohort at risk.

Pride and pain.

Autism is not one story. For some, it brings joy, identity, and pride. For others, it brings relentless struggle, exhaustion, and grief. For many, it is both at once.

Recognising profound autism means holding space for the whole spectrum. All the moments of happiness, connection, and success, and the painful realities of medical emergencies, behaviours of distress, and lifelong dependence. It is only by acknowledging this complexity that we can build systems that truly work.

So why this conversation right now?

Whether you love it or loathe it, we are living in a time of sweeping policy reform. With the National Autism Strategy and NDIS reforms already in motion, government decisions made today will shape support for decades. Profound autism must not be overlooked and the parents and caregivers and profoundly autistic people themselves need to be heard.

‍Studies show that research including participants with severe and profound autism has declined as a proportion of overall autism research since the 1990s. Investment is urgently needed to answer the hardest questions, and bring profound autism back from the dark reaches of deep space.

Profoundly autistic people, their families and caregivers deserve recognition, support, and resources that match the scale of their daily reality. Profound autism is not a fringe issue or a footnote unworthy of inclusion. It is a reality for thousands of  autistic Australians with profound or severe core activity limitations — children and adults, and the families who stand beside them.

By recognising and addressing their needs, and placing them at the centre of the national agenda, we can start building a system that reflects the whole spectrum.