Rural siblings of neurodivergent children face poorer mental health

New Curtin University-led research has found that siblings of people with neurodevelopmental conditions in regional and remote Australia are more likely to suffer poor health and be neglected.

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, about factors influencing their well-being such as resilience, social support and general family functioning.

While most participants had autistic siblings, other neurodevelopmental conditions included attention deficit hyperactivity disorder, fetal alcohol spectrum disorder, Down syndrome, and intellectual disability.

The researchers found that about a third of the siblings experienced low health (29 percent), about 40 percent reported moderate health and about a third rated their health as high.

Low well-being suggests that a person is not satisfied with his or her life and is likely to need additional external support to become more satisfied.

Lead author Samuel Antoniou, a PhD candidate at the Curtin School of Population Health, said many siblings reported developing resilience, but most relied on themselves or informal community networks for support.

Participants consistently reported inadequate access to formal mental health services, citing either self-reliance or turning to their local communities for assistance in coping with the emotional challenges associated with being a sibling of someone with a neurodevelopmental condition.

Many participants described feeling ignored, invisible, or expected to ‘just manage’ while still experiencing significant emotional stress.”

Samuel Antonio, lead author, PhD candidate at the Curtin School of Population Health

Mr Antonio said resilience and community support were key to improving sibling outcomes.

“Resilience and social support together accounted for more than half of the variation in siblings’ well-being, while family functioning per se was not a strong predictor,” they said.

“Importantly, siblings who felt supported by their local communities – through understanding, inclusion and acceptance – reported better mental health and well-being.”

Project supervisor and principal investigator, Dr Chloe Maxwell-Smith, also from the School of Population Health, said the findings reinforce the need to increase investment in sibling-specific support in neurodevelopment and clinical mental health beyond metropolitan Australia.

This included accessible one-on-one counseling, peer programs, community education initiatives, and flexible online or hybrid services that minimized travel.

“Siblings are often self-reliant out of necessity, and they desire clinical and community support that accepts them first, not just as a sibling, but as a person,” Dr. Maxwell-Smith said.

“Improving the well-being of these siblings does not require any single solution to reducing the burden and risk of mental health conditions. What matters is layered support – building individual resilience with psychosocial support, strengthening social connections, and empowering communities to recognize siblings as people in their own right.”

Alannah Stojcevic, from the Gippsland region of rural Victoria, participated in the study to share her experience as a sibling to a younger autistic sister.

The 21-year-old said she was grateful to researchers for bringing to light the lack of support in the areas for both individuals with the neurodevelopmental condition as well as their siblings.

“As far as I’m aware help or support services don’t exist for people like me, and they certainly weren’t available to me,” Mrs Stojcevic said. “Having someone to talk to about these issues – who understands – is a dream to me right now.

“I have great hopes that this research will contribute to positive change in rural communities across Australia.”

The study, ‘The well-being and support preferences of siblings of individuals with neurodevelopmental conditions in regional and remote Australia: a mixed methods investigation’, is published in. Disability and Rehabilitation.