Background: This paper reports on the first qualitative study to investigate lived experiences of autism in Aboriginal and Torres Strait Islander communities in Australia. Listening to these marginalised voices is vital to finding ways of working with communities to provide the kinds of services and support they want and to establishing a participatory research agenda in a field that has received inadequate attention. Methods: Twelve women supporting 16 autistic children living in remote, regional and urban areas of Australia participated in a semi-structured interview. The interviews were thematically analysed using the six-step process outlined by Braun and Clarke. Results: The analysis identified four focal aspects to how Aboriginal and Torres Strait Islander women conceptualise the practical work of mothering autistic children. These are i) navigating the autism system in order to achieve diagnosis and connect to culturally safe services and supports; ii) helping children to learn to live in the big world by engaging in everyday care and enhancing capacities; iii) protecting children by keeping them safe, dealing with stigma and respecting individuality and; iv) asserting family belonging by emphasising children’s strengths, encouraging extended family relationships and advocating for other families in community. Conclusion: Aboriginal and Torres Strait Islander women support and care for their autistic children by engaging in pragmatic efforts to connect them to autism services, to education and to their communities. In doing so they frequently face discriminatory attitudes, including ableism and racism. More research is urgently needed into experiences of autism in these communities.
11 Dec 2020
Australasian Society for Autism Research 2020 Conference