Inclusion, acceptance, shame and isolation

Abstract

This is the first qualitative study to investigate experiences of, and attitudes towards, autism in Aboriginal and Torres Strait Islander communities in Australia. Understanding the complexity of these attitudes is crucial because they influence the recognition of autism as well as the ways in which individuals and families are supported. Twelve families with 16 autistic children living in diverse regions of Australia participated in a semi-structured interview. The interviews were thematically analysed using the six-step process outlined by Braun and Clarke. The analysis identified a marked tension in participants’ accounts. On the one hand, participants described negative feelings, including shame associated with atypical behaviour, stigmatisation and the social isolation of families, which potentially point towards under-identification or misdiagnosis. On the other hand, they also described inclusive attitudes, including ‘looking after each other’ and a growing acceptance of autistic differences. This positive model of support for and acceptance of autistic children and their families may well contribute to good outcomes for autistic children and adults in Aboriginal and Torres Strait Islander communities. More research is needed on cross-cultural and pluralistic understandings of autism, parental perceptions and family experience. Lay 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. Show more