At some point, and hopefully not anytime soon, I need to die. But I’m terrified what that means for the care and support of my autistic son. 

Almost 300,000 Australians live with autism. Is that a problem? Absolutely not. People with autism can and do live fulfilling and dignified lives.

Every community across our vast country has autistic people. This disability doesn’t discriminate based on postcode, wealth, ethnicity or political allegiance. 

What is problematic is the inadequate and flawed support systems available to families with autistic children who would greatly benefit from early intervention.

It’s all well and good keeping tabs on how many people have this disability, but it’s pointless unless public policy keeps pace with community needs. 

As a parent of an autistic adult, I am all too familiar with red tape, systemic failure and disappointment. And for 25 years I’ve been happy to call it out.

This month we are shining a light on years of neglect shown towards our autistic community. Last week, we hosted a summit of Australia’s leading experts in Autism and we released our 2025 National Parent/Carer Survey Report.

More than 1,200 families from every state and territory participated and shared their lived experiences. Their stories - of frustration, exhaustion, and relentless advocacy - reveal a support system that is stretched, fragmented, and in many cases, fundamentally unfit for purpose. 

The figures are shocking, with the survey revealing fundamental failures in the diagnosis of autistic children with wait times skyrocketing in recent years. 

Around one in three (32 per cent) families are waiting more than two years for a diagnosis, a 70 per cent increase since 2014. 

The number of families receiving a timely assessment in under six months has plummeted to just 26 per cent, a 54 per cent decrease since 2014.  

Only 7.5 per cent of autistic people live independently. 

The survey is not just a data set. It is a call to action.

The reason for these delays is due to long wait times to see a GP for a specialist referral, followed by long wait times to see specialists for diagnosis. This is across both the public and the private systems. 

Meanwhile, too many families are waiting years for a diagnosis. Too many children are missing out on critical early intervention. Schools are struggling to meet even the basic needs of autistic students. 

When young people reach adulthood, they often fall into a void of limited job prospects, inadequate support, and few pathways to independence.

These are not new problems. But what’s deeply concerning is how little has changed in the decade since our last national survey. In fact, by several key measures - wait times, access to diagnosis, mental health challenges - the situation has worsened.

As the Commonwealth Government rolls out major reforms - including the introduction of Foundational Supports and the National Autism Strategy - autistic people and their families must not be an afterthought. They must be at the centre.

Concerningly, new reforms like the transition to Foundational Supports, are proceeding with limited consultation, poor communication, and very little confidence from the people most affected. 

According to our survey, nearly 80 per cent of families don’t know what Foundational Supports are, let alone how they will function. 

State governments are about to inherit a system they are unprepared to administer, with no consistent framework, no rollout clarity, and no trust from the people it’s meant to help.

Families aren’t expecting miracles. They expect a system that listens, responds, and supports them before crisis point. And right now, that system isn’t up to the task.

Progress is possible. But only if we move beyond sound bites and commit to building systems and implementing policies that genuinely work for autistic Australians across every stage of life.

This includes tackling diagnostic bottlenecks with national benchmarks and equitable access across public and private sectors. Equipping schools with trained staff, flexible learning models, and resourced classroom support. Strengthening the NDIS while ensuring that new reforms like Foundational Supports do not leave families in the dark or worse off. And committing to transparency and co-design in all autism policy reform going forward.

We call on all levels of governments and politicians from all political stripes to take these survey findings seriously. Families deserve nothing less.

They must listen to what families are telling us, act with urgency, with coordination, and with accountability. 

The question is whether politicians and bureaucrats have the backbone to improve systems and make life easier for autistic people. 

Close to 300,000 Australians and their families will be hoping the answer is yes.

When I’m no longer here to support and advocate for my son, I hope we will finally have a system in place which looks after him, and all the other autistic Australians who deserve better. 

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Nicole Rogerson is CEO of Autism Awareness Australia