Inclusion, acceptance, shame and isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in Australia

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.

‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

“…Because cultural values shape beliefs about autism, expectations of normative behaviour and experiences of stigma and discrimination, it is likely that adult autistic lives show wide cross-cultural variability (e.g. Grinker & Cho, 2013; Lilley et al, 2020 see Norbury & Sparks, 2013). The task of documenting the lives of late autistic adults inhabiting these different backgrounds remains and others may wish to use our protocol (Pellicano et al, 2020) to further diversify this vital area of research.…”

Treating eating disorders in patients with autism: Should treatment standards be implemented on a spectrum?

“…AN and ASD are two categorically different diagnoses: AN is a psychiatric disorder that presents with serious, acute risk of health complications and even death and therefore requires early intervention to prevent and treat this disorder that is incompatible with a healthy life (Björnsdotter et al, 2018; Tchanturia et al, 2019). By contrast, autism is a “lifelong neurodevelopmental condition” that presents with varying degrees of severity (Lilley et al, 2020). A neurodiversity model of autism asserts that cognitive and neurodevelopmental differences between autistic and nonautistic people represent natural variations that occur in a population and that treatment should focus on improving quality of life and health outcomes for autistic people facing coexisting psycho-social difficulties (Bottema-Beutel et al, 2021).…”

Early detection of Australian Aboriginal and Torres Strait Islander infants at high risk of adverse neurodevelopmental outcomes at 12 months corrected age: LEAP-CP prospective cohort study protocol

“…Incidence of ASD in Indigenous Australian children is hypothesised to approximately equal non-Indigenous rates, at between 7 and 15 ASD cases per 1000 births. 6 80 Incidence of FASD in Indigenous Australians is estimated at 17 FASD cases per 1000, 101 but could be as much as 10-times higher in some remote communities. 97 The overall number of Indigenous children who have either developmental delay or an adverse NDO may range from 10% in low risk cohorts 14 to 30% in high-risk remote communities.…”

“… 1 2 Indigenous Australians are 1.8 times more likely to experience disability, twice as likely to have a severe disability and are less likely to access support 3 compared with non-indigenous Australians. 4 5 Inequities in access to culturally safe health and disability support services, 6 long waiting lists and the rurality of some Indigenous communities, further compounds this disadvantage. 7 8 These factors have contributed to a significant gap in health outcomes between Indigenous and non-Indigenous Australians.…”

“… 80 While some studies have investigated the incidence of ASD and intellectual disability among specific Indigenous communities, accurate prevalence remains relatively unknown, with reported inconsistencies impacted by differences in cultural conceptualisation of disability, misdiagnosis and decreased awareness of ASD among Indigenous communities. 3 15 64 80–83 There is growing concern that Indigenous children are misdiagnosed or missing out on an ASD diagnosis, 6 82 supporting the need for culturally sensitive early diagnostic tools and services.…”