A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder

Abstract

Experiencing stigma related to having a child with autism spectrum disorder (ASD) can be difficult and is detrimental to parent well-being. Since the research on stigmatized experiences among parents of children with ASD in non-Western communities is limited, this qualitative study examined the experiences, reactions and impacts of stigma on parents of children with ASD in Hong Kong. In-depth interviews were conducted with 54 Chinese parents/caregivers of children with ASD aged between 35 and 73 years old. Data were analyzed using an inductive approach. The participants reported stigma which stemmed from negative labelling of their children by schools and healthcare professionals, bullying by peers, stereotypes of ASD and stigma linked to autistic children’s behavior in the community. The reactions of participants towards stigmatization were classified into internalizing reactions including apologizing, ignoring and concealing ASD and externalizing reactions such as fighting back. The participants also reported impacts of stigma on both personal and emotional levels. The results point to the urgent need for the government to allocate resources and make concerted efforts to reduce stigma by educating the community to foster more positive attitudes towards individuals with ASD and offer support and counselling services to parents.