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

Rozanna Lilley, Mikala Sedgwick, Liz Pellicano

Research output: Contribution to journalArticlepeer-review

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.
Original languageEnglish
Number of pages26
JournalDisability and Society
DOIs
Publication statusE-pub ahead of print - 19 Jul 2021

Keywords

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

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