New Curtin University-led research has found siblings of people with neurodevelopmental conditions in regional and remote Australia are struggling with poorer wellbeing and are more likely to feel overlooked.
The study, which included researchers from The Kids Research Institute Australia, involved surveying siblings aged 16 to 30 who currently live, or have previously lived, in non-urban areas on factors affecting their wellbeing such as resilience, social support and general family functioning.
While most participants had autistic siblings, other neurodevelopmental conditions included attention deficit hyperactivity disorder, foetal alcohol spectrum disorder, Down syndrome, and intellectual disability.
Researchers found nearly a third of siblings experienced low wellbeing (29 per cent), nearly 40 per cent reported moderate wellbeing and about a third rated their wellbeing as high.
Low wellbeing suggests a person is not satisfied with their life and is likely to need additional external support to become more satisfied.
Lead author Samuel Antonio, a PhD candidate from Curtin’s School of Population Health, said while many siblings reported developing resilience, most relied on themselves or informal community networks for support.
“Participants consistently reported insufficient access to formal mental health services, either citing self-reliance or turning to their local communities to assist with coping with emotional challenges associated with being a sibling to someone with a neurodevelopmental condition,” Mr Antonio said.
“Many participants described feeling overlooked, invisible, or expected to ‘just manage’, even while experiencing significant emotional strain.”
Mr Antonio said resilience and community support were critical to improving sibling outcomes.
“Resilience and social support together accounted for more than half the differences in siblings’ wellbeing, while family functioning on its own was not a strong predictor,” he said.
“Importantly, siblings who felt supported by their local communities — through understanding, inclusion and acceptance — reported better mental health and wellbeing.”
Project supervisor and principal investigator, Dr Chloe Maxwell-Smith, also from the School of Population Health, said the findings reinforce the need for increased investment in sibling‑specific supports in neurodevelopment and clinical mental health beyond metropolitan Australia.
This included accessible one-on-one counselling, peer programs, community education initiatives, and flexible online or hybrid services that reduced travel.
“Siblings are often self-reliant through necessity, and they desire clinical and community supports that acknowledge them first as individuals, not just siblings,” Dr Maxwell-Smith said.
“Improving wellbeing for these siblings doesn’t require a single solution to reduce burden and risk of mental health conditions. What matters is layered support — building individual resilience with psychological supports, strengthening social connections, and empowering communities to recognise siblings as people in their own right.”
Alannah Stojcevic, from the Gippsland region in rural Victoria, took part in the study to share her experience as the sibling of a younger autistic sister.
The 21-year-old said she was grateful to researchers for bringing the lack of support in the regions — both for individuals with a neurodevelopmental condition as well as their siblings — to light.
“Help or supportive services for people like me don't exist as far as I am aware, and they certainly aren't available near me,” Mrs Stojcevic said. “Having someone to talk to about these issues — someone who understands — is a bit of a pipedream for me at this point.
“I sincerely hope this research contributes to positive change in rural communities throughout Australia.”
The study, ‘Wellbeing and Support Preferences of Siblings of Individuals with a Neurodevelopmental Condition in Regional and Remote Australia: A Mixed Methods Investigation’, has been published in Disability and Rehabilitation.