NEW SURVEY: AUTISM DIAGNOSIS DELAYS SKYROCKET, PEAK BODY CALLS FOR ACTION

MEDIA RELEASE

Thursday 3 April 2025

[PLEASE NOTE: AAA CEO NICOLE ROGERSON IS AVAILABLE FOR INTERVIEWS] 

A new national survey has revealed systemic failures in the diagnosis of autistic children with wait times skyrocketing in recent years.

 

The Autism Awareness Australia (AAA) survey of more than 1,200 parents and carers was conducted in February this year and revealed 32 per cent of families are waiting more than two years for a diagnosis, a 70 per cent increase since 2014.

 

The survey was launched at the National Autism Summit hosted by AAA in Sydney yesterday, where 20 of Australia’s leading autism experts have gathered to discuss this crisis.

 

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. 

 

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 the specialist for diagnosis. This is across both the public and the private systems.

 

AAA Chief Executive Officer Nicole Rogerson said these compounding factors are leading to delayed support and intervention for children who desperately need help.

 

“This report lays bare just how dire the challenges are for families of autistic children,” Ms 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.

 

“Private assessments can cost thousands of dollars and are having a significant impact on families during our growing cost-of-living crisis, with one in four families delaying autism diagnosis because they just can’t afford to pay the bills.”

 

Alarmingly, the survey revealed a staggering 87 per cent of parents and carers are concerned about their child’s mental health and wellbeing during school years.

 

“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 per cent remain unemployed in adulthood and 78 per cent still live at home,” Ms Rogerson said.

 

More than 85 per cent of parents and carers said ensuring their child gets the support they need at school is their biggest challenge. These concerns are exacerbated as the Commonwealth Government is shifting responsibilities to state governments while autistic children lose their NDIS packages.  

 

“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 and rollout foundational supports,” Ms Rogerson said.

 

“Sadly, almost two thirds of parents and carers do not know how they will continue to fund critical early intervention services if their child is not fully covered under the NDIS.”

 

Other key themes of the survey responses was the strain on parental mental health, lack of resources available, and families feeling both overwhelmed and validated by diagnosis.

 

“Despite the many challenges, it was heartwarming to read parents and carers’ pride in their child’s unique strengths and milestones, with many calling for compassionate and individualised support services that address the diverse needs of individual children,” Ms Rogerson said. 

 

Many respondents expanded upon their answers, offering an insight into the everyday challenges and triumphs within the autism community:  

 

• “The process of getting a formal diagnosis was confusing and filled with delays, leaving us with more questions than answers.”
  
  
• “Early intervention has been life changing. Every therapy session feels like a step toward a better future.”
  
  
• “The special programs at school helped, but there were still so many gaps in support that made the experience very difficult.”
  
  
• “Listen to families. They know their child best. Our voices should be at the heart of how services are designed.”
  
  
• “The complexity of the NDIS system makes it feel like you’re fighting an uphill battle just to get the basic supports in place.”
  
  
• “While NDIS funding has helped, it still doesn’t cover all the necessary therapies, and the uncertainty about future reviews is a constant worry.”
  
  
• “Develop an integrated support framework that addresses both immediate needs and long-term planning. It shouldn’t be a patchwork of services.”
  
  
• “Invest in public awareness campaigns to change the narrative around autism and promote a more compassionate society.”

 

For more information on AAA’s National Autism Parent/Carer Survey 2025, visit www.autismawareness.com.au

 

ENDS

 

Media contact: Will Sparling | 0416 628 276

 

About Autism Awareness Australia

Autism Awareness Australia (AAA) is the leading national peak body for families, dedicated to supporting individuals on the autism spectrum and their families. With an 18-year track record of trusted, independent service, AAA has become the go-to organisation for autism information, advocacy and resources across Australia. AAA’s mission is simple - to improve the lives of all Australians on the autism spectrum by empowering families and working towards better outcomes.

 

 

 

 

SURVEY FACT SHEET

 

Summary of key statistics from AAA’s National Autism Parent/Carer Survey 2025, which was conducted in February and March 2025:

• Wait times for an autism diagnosis have significantly increased over the past decade:
  
  

• • The percentage of families waiting more than two years has increased to 32.3%, compared to 19% in 2014 This represents a staggering 70% increase.
    
    
  • The number of families receiving a diagnosis within six months has dropped from 58% (2014) to 26.3% representing a 54% decline.
    
    

• Parents / carers identified the following top challenges in school for students with autism:
  
  

• • 70.3% of students struggle with peer relationships.
    
    
  • 46.4% find it difficult to connect with a suitable peer group.
    
    
  • 45% cited a lack of trained teachers and staff.
    
    
  • 37.8% said academic requirements were not adjusted to meet their child’s needs.
    
    
  • 32.1% report their child has experienced bullying.

 

• 87.3% of parents and carers are concerned about their child’s mental health and wellbeing during school years.
  
  
• 76.6% of children are being diagnosed through a private service provider, compared to 20.4% through Government-funded diagnostic services.
  
  
• Additional conditions diagnosed by a healthcare professional alongside autism:
  
  

• • 66.2% also have ADHD/ADD.
    
    
  • 57.8% also have anxiety.
    
    
  • 25.4% also have depression or other mental health disorders.
    
    

• The majority of respondents (81.7%) required either Level 2 or Level 3 support.
  
  
• 25.9% of families cited financial constraints as a reason for a delayed diagnosis.
  
  
• 61.5% of parents/carers did not know how they would continue to fund early intervention if not fully covered under the NDIS.
  
  
• 9.2% of parents/carers anticipate spending more than $50,000 per year on support services for their child. 29.2% expect to pay between $5,000 and $20,000 per year.
  
  
• Parents/carers wanted to see the following improvements in schools:
  
  

• • Recognition of different learning styles – 82.5%
    
    
  • Additional training for teachers – 82.1%
    
    
  • Autism-specific training for teacher’s aides – 79.9%
    
    
  • Increased classroom support – 74.6%
    
    
  • Peer education on autism and inclusion - 73.8%
    
    
  • Greater inclusion and acceptance from the broader school community – 68.8%
    
    

• 85.2% of parents/carers said ensuring their child gets the support they need at school was one of their biggest challenges.
  
  
• 40.3% of respondents reported their child is unemployed after leaving school. 21.4% are going on to tertiary education (University, College, TAFE, vocational training). 5.3% are employed through Australian Disability Enterprises. Only 5.6% reported that their child was in full-time employment.
  
  
• 78.6% of those surveyed said their adult child with autism is living with their parents. Only 7.5% live independently.
  
  
• 94% reported experiencing challenges with the NDIS, with 6.5% saying the scheme has been great overall.
  
  
• The biggest concern with the future of the NDIS was that funding will continue to decrease (73.2%) followed by further restrictions on therapy funding (72.9%) and administrative hurdles increasing (71.7%).