New Curtin University-led research has found that siblings of people with neurodevelopmental disabilities living in regional and remote areas of Australia are more likely to suffer from lower levels of well-being and feel overlooked.
The study, involving researchers from Kids Research Institute Australia, surveyed siblings aged 16 to 30 who currently or previously lived in non-urban areas about factors that influence their well-being, including resilience, social support and general family functioning.
Most participants had a sibling with autism, but other neurodevelopmental disorders included attention deficit hyperactivity disorder, fetal alcohol spectrum disorder, Down syndrome, and intellectual disability.
The researchers found that nearly one-third (29%) of siblings experienced low levels of well-being, nearly 40% reported moderate levels of well-being, and about one-third rated their levels of well-being as high.
Low happiness suggests that the person is not satisfied with their life and likely needs additional external support to be more satisfied.
Lead author Samuel Antonio, a PhD candidate at Curtin University’s School of Population Health, said while many siblings reported building resilience, most relied on themselves and informal community networks for support.
Participants consistently reported inadequate access to formal mental health services, citing lack of independence and relying on their local community to help them cope with the emotional challenges associated with being the sibling of someone with a neurodevelopmental disorder.
Many participants described feeling overlooked, invisible, or expected to “make do” while experiencing significant emotional strain. ”
Samuel Antonio, lead author, PhD candidate, School of Population Health, Curtin University
Mr. Antonio said resilience and community support are essential to improving outcomes for our brothers and sisters.
“While resilience and social support together account for more than half of the difference in sibling well-being, family functioning alone is not a strong predictor,” he said.
“Importantly, siblings who felt supported by their local community 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 supported the need for increased investment in sibling-specific supports in neurodevelopmental and clinical mental health outside of Australia’s metropolitan areas.
This includes accessible one-on-one counseling, peer programs, community education initiatives, and flexible online or hybrid services that reduce travel.
“Siblings are often independent by necessity, and they desire clinical and community support that recognizes them as individuals, not just siblings,” said Dr. Maxwell-Smith.
“Improving the well-being of these siblings does not require a single solution to reduce the burden and risk of mental health conditions. What is important is multi-layered support that builds individual resilience through psychological support, strengthens social connections, and empowers communities to recognize siblings as the real people they are.”
Alana Stojcevic, from Victoria’s rural Gippsland region, took part in the study to share her experience as a sibling to a younger sister with autism.
The 21-year-old said she was grateful to the researchers for exposing the lack of support in the community for both individuals with neurodevelopmental disabilities and their siblings.
“As far as I know, there are no support or support services for people like me, and they certainly aren’t available near me,” Stojčević said. “Having someone to talk to about these issues, someone who understands, is a bit of a pipe dream for me at this point.
“It is my sincere hope that this research will bring about positive change in rural communities across Australia.”
The study, “Well-being and support preferences of siblings of individuals with neurodevelopmental disabilities in regional and remote areas of Australia: A mixed methods investigation” disability and rehabilitation.
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Reference magazines:
Antonio, S. others. (2026). Well-being and support preferences of siblings of individuals with neurodevelopmental disabilities in regional and remote areas of Australia: A mixed methods study. Disability and rehabilitation. DOI: 10.1080/09638288.2026.2663921. https://www.tandfonline.com/doi/full/10.1080/09638288.2026.2663921
