Understanding carers’ lived experience of stigma: the voice of families with a child on the autism spectrum

Abstract

Existing research suggests that there are several unique challenges associated with caring for a child on the autism spectrum. Despite a growing evidence base regarding autism spectrum disorders and their increasing prevalence, children on the autism spectrum and their families continue to perceive stigmatisation from various sources throughout the community. These perceptions of stigma can profoundly impact the quality of life of these children and their carers alike. This exploratory study sought to investigate carers' perceptions of stigma in caring for a child with high functioning autism. Fifteen carers from Sydney and the South Coast regions of New South Wales, Australia, participated in semi-structured interviews regarding their caring experiences and any perceived encounters with stigma. Four domains of stigmatising experiences were identified: (i) lack of knowledge, (ii) judgement, (iii) rejection and (iv) lack of support. These domains were each reported to exist in four main contexts: (i) school, (ii) public, (iii) family and (iv) friends. These domains and contexts established a framework which provided a detailed account of how and where carers felt stigmatised, including the suggestion of a stigmatising pathway through the four domains. The main contexts in which stigma was perceived also appeared to be related, with those carers who experienced stigma in one context being more likely to report similar experiences in other contexts. Any attempts to empower carers in the face of stigmatisation should therefore consider each of these domains, the pathway that connects them and the relationship between different social contexts. Through identifying this pathway, supportive services can be acutely aware of how carers may perceive potentially stigmatising experiences and therefore provide appropriate interventions or support for the relevant stage of the pathway.

‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom

“…Our research supports the findings of other recent studies in Australia (Broady, Stoyles, and Morse 2015), Nepal (Heys et al 2016), Pakistan and India (Minhas et al 2015), China (Lu et al 2015), the USA and Canada (Kinnear et al 2016) that suggest stigma continues to be a significant challenge for many families of children with autism, irrespective of their ethnic and cultural backgrounds. Kinnear et al's (2016) study in North America found that stigma and their child's autism-related behaviours played the largest roles in making parents lives challenging.…”

Video-Conference Interviews: Ethical and Methodological Concerns in the Context of Health Research

“…These findings are consistent with other studies (i.e. Gray, 1993;Gray, 2002;Green, 2003;Green et al, 2005;Broady et al, 2015;Kinnear et al, 2016) that indicated the majority of parents experienced felt stigma. Stigma certainly plays a major and significant role in making lives difficult for parents of children with ASD.…”

Perceptions of social support: comparisons between fathers of children with autism spectrum disorder and fathers of children without developmental disabilities

“…; Broady et al . ), which might cause fathers to socially withdraw and rely on the emotional support of their partners to a greater extent than fathers of children W/OD. Research indicates that fathers of children with ASD heavily rely on the support of their partner over support from friends or extended family (Paynter et al .…”