A hard slog road: Aboriginal and Torres Strait Islander women talk about loving and supporting their autistic children

Abstract

This article draws on the first qualitative research on lived experiences of autism in Aboriginal and Torres Strait Islander communities in Australia. Twelve women supporting 16 autistic children living in remote, regional and urban areas of Australia participated in a semi-structured interview. Through thematic analysis, we identified four focal themes in women’s conceptualisation of the practical work of mothering autistic children. These are (i) navigating a complex autism system 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 others. Listening to these marginalised voices is vital to establishing a participatory research agenda in a field that has received inadequate attention.

Points of interest

• This is the first research on lived experiences of autism in Aboriginal and Torres Strait Islander communities in Australia.

• Twelve women from remote, regional and urban areas spoke about their experiences of loving and supporting their autistic children.

• Women talked about the practical work of mothering their autistic children including achieving autism diagnosis, trying to access culturally safe services and supports, undertaking everyday care needs and enhancing capacities and abilities.

• Women emphasised children’s strengths and their belonging in community; they were very concerned with protecting them and keeping them safe in the context of intersecting racist and ableist attitudes.

• More participatory research on autism within Aboriginal and Torres Strait Islander communities is urgently needed.

Keywords:

• Autism
• culture
• Aboriginal and Torres Strait Islander
• mothers
• family
• Indigenous

Acknowledgements

We are very grateful to the 12 women who generously shared their experiences. We also thank Jacqui Borland, Lee Cascuscelli, Suzanne Donnelly, and Maria Watson-Trudgett from Positive Partnerships, and June Riemer from First Peoples Disability Network, for their assistance throughout the research process. Bronwyn Carlson and Tristan Kennedy provided encouragement during the initial stages of the project, and Angelica Ojinnaka volunteered assistance during data collection.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Department of Education, Skills and Employment, Australian Government.