Autism diagnosis delays surge as families face long waits and rising costs

A new national survey has revealed alarming delays in autism diagnosis across Australia, with wait times for assessments soaring over the past decade. The findings, released by Autism Awareness Australia (AAA), paint a troubling picture for families seeking timely support, with many facing financial and emotional strain as they navigate the diagnostic process.

The survey, which gathered responses from more than 1,200 parents and carers in early 2025, found that 32% of families are now waiting more than two years for a formal diagnosis – a 70% increase since 2014. Meanwhile, the proportion of families receiving a diagnosis within six months has plummeted to just 26%, marking a 54% decline.

These results were presented at the National Autism Summit in Sydney, where 20 of the country’s top autism experts convened to discuss the crisis. AAA Chief Executive Officer Nicole Rogerson said the survey confirms that systemic failures are preventing children from accessing critical early intervention and support.

“This report lays bare just how dire the challenges are for families of autistic children,” Rogerson said. “We’ve seen 10 years of investment in the National Disability Insurance Scheme (NDIS), and yet we’re seeing increasingly worse diagnosis rates. That is simply not good enough.”

Long Wait Times and Financial Barriers

The delays in diagnosis are primarily due to long wait times for GP referrals to specialists, followed by further delays in securing appointments for diagnostic assessments. These issues affect families in both the public and private healthcare systems.

For those seeking private assessments, the financial burden can be significant. Many parents face out-of-pocket expenses amounting to thousands of dollars, a particularly heavy strain as Australia grapples with a growing cost-of-living crisis. One in four families surveyed reported delaying an autism diagnosis because they simply could not afford it.

Beyond financial concerns, the consequences of these delays extend into children’s mental health and education. A striking 87% of parents and carers expressed concern about their child’s mental wellbeing during school years, citing barriers to proper support in classrooms.

“If young children face multiple barriers to timely diagnosis, miss out on appropriate early intervention, and then struggle to receive the right support at school, is it any wonder that 40% remain unemployed in adulthood and 78% still live at home?” Rogerson said.

Schools Struggling to Provide Support

The survey also highlighted widespread issues in the education system, with 85% of parents saying their biggest challenge is ensuring their child gets the necessary support at school.

Among the key challenges identified by parents:

• 70% of autistic students struggle with peer relationships.
• 46% find it difficult to connect with a suitable peer group.
• 45% say there is a lack of trained teachers and support staff.
• 32% report their child has experienced bullying.

Parents overwhelmingly called for improvements in the school system, including increased autism-specific training for teachers, greater classroom support, and more inclusive learning environments.

Growing Concerns Over NDIS Funding

The survey also revealed deep concerns over the future of the NDIS, with 94% of parents reporting challenges with the scheme. A major issue is the shifting of responsibility for support services from the Commonwealth to state governments, leaving many families uncertain about their access to funding.

“Autism Awareness Australia is continuing to call for immediate action to address the significant gaps in support for autistic children who are losing their NDIS packages, with state governments not ready to pick up the funding shortfall,” Rogerson said.

More than 60% of parents said they did not know how they would continue to fund early intervention services if their child was not fully covered under the NDIS.

Families Speak Out

Many parents shared their personal experiences in the survey, providing insight into the daily struggles faced by families navigating the diagnosis and support process.

“The process of getting a formal diagnosis was confusing and filled with delays, leaving us with more questions than answers,” one parent said.

Another respondent highlighted the critical role of early intervention: “Every therapy session feels like a step toward a better future.”

Parents also called for better coordination between health, education, and disability services to create a more integrated system. “Develop an integrated support framework that addresses both immediate needs and long-term planning. It shouldn’t be a patchwork of services,” one parent wrote.

Despite the challenges, many parents expressed pride in their children’s unique strengths and abilities. They emphasised the need for compassionate, individualised support that acknowledges the diverse needs of autistic children.

Call for Urgent Action

With diagnosis delays worsening, financial burdens growing, and families struggling to secure adequate support, AAA is urging policymakers to take immediate action. The organisation is calling for improved access to diagnostic services, greater investment in school-based support, and a clearer commitment from governments to ensure no child is left behind.

For more information on AAA’s National Autism Parent/Carer Survey 2025, visit https://www.autismawareness.com.au/events/2025-autism-survey-report