Recognising Profound Autism: Why Every Story Matters

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Autism Is Not One Story

Autism is not one story. It is thousands of stories, lived every day by children, adults, and families across Australia.

Some of those stories are joyful. Some are tough. Most are a mix of both. And right now, one group of families feels their story isn’t being heard enough: those raising and supporting people with profound autism.

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What Does Profound Autism Mean?

Profound autism is a way of recognising people with the most complex, lifelong support needs. Many are non-speaking or minimally verbal. Many live with intellectual disability. Most need intensive support, often across the entirety of their lives.  

But these descriptions only scratch the surface. Behind them are people - daughters, sons, siblings, friends - who experience joy, humour, connection, and growth every day. Families of profoundly autistic people often talk about the small, powerful moments that keep them going, like a child trying a new food for the first time. Or a teenager lighting up when they hear their favourite song. Or the quiet pride when a young adult finds comfort in a daily routine.

These moments matter. They are reminders that profound autism is not just about challenges. It is also about humanity, love, resilience and possibility.

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Why Recognition Matters

When profound autism is overlooked, families can feel isolated. But when it’s recognised, something shifts. Services improve when built with these families in mind. Policy is smarter when it reflects the full range of needs. Community understanding grows when stories include everyone, not just the most visible voices.

Most of all, recognising profound autism ensures no family feels invisible or left behind.

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Building an Inclusive Australia

Autism is a spectrum, and every point on that spectrum deserves respect and recognition.

Celebrating profound autism doesn’t mean glossing over the hard parts. It means making space for the whole picture: from the struggle right through to the love, progress and humanity. Because families who love and care for their profoundly autistic person are also building lives filled with meaning, care, and connection.

Profound autism is not rare. It’s part of our shared community. By listening deeply and carefully to these families, supporting their journeys, and learning from their resilience, we can build a more inclusive Australia: one where every autistic person, at every stage and support level, is valued.

Because when we see the whole spectrum, we all grow stronger together.

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Frequently Asked Questions

Is profound autism rare?

No. International research shows that profound autism represents a significant proportion of the autistic community.

How is profound autism different from other autism diagnoses?

It describes autistic people with the most complex, lifelong support needs, often including intellectual disability and minimal verbal language.

What support do families of profoundly autistic people need most?

Families of profoundly autistic people tell us they need visibility, respite, accessible services, and policies that reflect their daily realities and the complex needs of their profoundly autistic person.

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