Inclusion, acceptance, shame and isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in Australia.
Aboriginal and Torres Strait Islander families feel both pride and shame about autism—partner with elders to make services culturally safe.
01Research in Context
What this study did
Lilley et al. (2020) talked with Aboriginal and Torres Strait Islander families about autism.
They used open interviews to learn how people feel and what words they use.
The goal was to see how culture shapes getting a diagnosis and using services.
What they found
Families told two stories at once. Some felt shame and wanted to hide the diagnosis.
Others gave full love and acceptance, calling the child ‘special’ or ‘clever’.
These mixed views decide whether families seek help or stay away.
How this fits with other research
Whiteside et al. (2022) found the same shame-plus-acceptance mix in Swahili villages in Kenya.
Wallace-Watkin et al. (2023) pooled 18 studies and showed stigma is a top barrier for all underserved groups; Rozanna’s families are one clear example.
Granieri et al. (2020) and Habayeb et al. (2020) heard similar distrust from Black American and Arab American caregivers, proving the pattern crosses continents.
Why it matters
You cannot remove stigma with flyers alone. Ask elders what words feel safe. Use local language. Hold meetings on country, not in clinics. When you respect both shame and pride, families stay in therapy.
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02At a glance
03Original abstract
There has been almost no research done about autism in Aboriginal and Torres Strait Islander communities in Australia. This article is the first detailed report on attitudes to autism in these communities. Understanding attitudes to autism is important because they influence whether or not children are diagnosed, as well as the kinds of support autistic people are getting. Twelve families who lived in different parts of Australia were interviewed. They told us that there is a range of attitudes to autism in Aboriginal and Torres Strait Islander communities. These include negative ideas such as sometimes feeling shame associated with children's unusual behaviour, as well as feeling stigmatised and socially isolated. The negative attitudes reported may mean that some children are missing out on an autism diagnosis or being wrongly diagnosed with a different condition in these communities. They also included positive ideas such as the importance of looking after each other and of accepting autistic people and their differences. We can all learn from these positive attitudes. It will be interesting to know in future projects whether these accepting attitudes lead to better outcomes for autistic children and adults in these communities. This research helps us to understand how autism is thought about in different cultures and how attitudes impact diagnosis and support. It will also help people to plan supports that reflect what Aboriginal and Torres Strait Islander families actually want and need.
Autism : the international journal of research and practice, 2020 · doi:10.1177/1362361320928830