News release

From: The Kids Research Institute Australia

National survey to expose gaps in autism support

One thousand Australian parents and caregivers of autistic children and adults are being sought to share their lived experience of what is working, where the gaps are, and what families need next.

● Open to any parent or family member who cares for an autistic child or adult; survey closes Monday 5th October 2026

● Findings will inform advocacy, policy, service design and the first phase of CliniKids’ five-year COMPASS research program.

● Latest ABS data estimates 290, 900 autistic Australians, up 41.8 per cent since 2018, with 84 per cent requiring support with at least one everyday activity.

Sydney and Perth, 14 September 2026: Australia’s autism support system will become the subject of a national conversation, with 1000 parents and carers being recruited to identify what is working, what is failing and what families need next.

The Autism Association of Australia and CliniKids, part of The Kids Research Institute Australia, today opened the 2026 National Autism Parent and Caregiver Survey. The online survey takes about 30 minutes and is open to anyone in a caregiving role for an autistic child or adult, anywhere in Australia.

“Families must be at the centre of the system, not left to navigate it alone,” Nicole Rogerson, CEO of the Autism Association of Australia, said. “We have been listening to families for more than 18 years, and they keep telling us the same thing,” she said. “Support is fragmented, confusing, and too often fails to meet their needs. This survey will ensure those experiences are captured as evidence that can drive better policy, better services, and better outcomes,” Ms Rogerson said.

TAKE THE SURVEY: https://shorturl.at/L0UQP Closes Monday 5 October 2026

A deep family cost - time, money and lost opportunities.

Perth CliniKids client Tracey Jewel Constable is mum to Frankie, 5, who was diagnosed with autism level 2/3 at 3 years old. Frankie has selective mutism and is semi verbal.

“One of the biggest challenges we have experienced is that autism is often treated as though there is a standard pathway or set of supports that will work for every child," said Ms Constable.

"Frankie can talk to us when regulated, but he is quite speech-delayed and people can have trouble understanding him, which leads to meltdowns. When Frankie is upset, he prefers to communicate by pointing to his visual charts or physically signing.” She believes that more efficient assessments and personalised support pathways would benefit children and families like hers, as well as the wider community. “This could help children like Frankie arrive at school understood, which would reduce a lot of stress on parents and anxieties in kids like Frankie.”

From family evidence to personalised support

Survey findings will also shape the first phase of COMPASS - COMmunication through Personalised ASsessment and Support - a five-year CliniKids research program.

With approximately three in five autistic children reaching school age unable to communicate easily, COMPASS aims to support every autistic child in Western Australia to communicate effectively by the time they start primary school.

COMPASS will develop a computerised adaptive assessment tool to map each autistic child’s strengths and support needs, helping clinicians to match each autistic child with the right evidence-based clinical and community supports for their individual needs, sooner.

“COMPASS will provide a more accessible, efficient and personalised assessment approach, reducing time spent on waitlists and appointment costs for families,” Professor David Trembath, Senior Principal Research Fellow at CliniKids, said.

The survey responses will ensure that lived experience directly informs the development of COMPASS. Professor Andrew Whitehouse, Director of CliniKids, said, “We are committed to ensuring that community consultation underpins our autism research”.

Nicole Rogerson added, “This is not just another survey. It is the foundation for a much bigger piece of work. If we get this right, we can fundamentally improve how autism support is designed and delivered in Australia.”

COMPASS is supported by The Stan Perron Charitable Foundation and Channel 7 Telethon Trust.

ENDS