Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder

Abstract

This paper analyses 12 parent interviews to investigate the stigmatisation of parents of children diagnosed with an autism spectrum disorder. Drawing on poststructural accounts of the relationship between knowledge and subjectivity, the stigma concept is critically interrogated in order to address previous individualistic constructions of stigmatisation and to place stigma within the power dynamics of social control. The results of the study indicate that a child's diagnosis with an autism spectrum disorder (ASD) is critical for parents to resist stigmatisation. Parents experienced considerable enacted stigma, but successfully resisted felt stigma by deploying medical knowledge to articulate unspoiled subject positions. The institutionalisation of medical knowledge within the autism community was critical to this process. Resistance to enacted stigma was successful to the degree that medical constructions of deviance deployed by parents were accepted by others, notably those in power within institutions. It is concluded that poststructural accounts of subjectivity and social control provide a useful way of conceptualising stigmatisation. An acceptance of the painful nature of stigma as lived experience co-exists with an emphasis on the constantly negotiated nature of embodied subjectivity as a contingent social process to illustrate the conditions for active resistance to stigmatisation.

Changes in the Diagnosis of Autism: How Parents and Professionals Act and React in France

“…The parental reports illustrated the tendency of some professionals to minimize problems and/or to enhance the feeling of guilt of the parents: (Chamak 2008;Farrugia 2009). The diagnosis provides a degree of explanation for a child"s behavior, and helps parents accept that they are not to blame for the condition (Chamak et al 2011).…”

“…Autism has shifted from being a rare disease to a broad syndrome and from a psychiatric disorder to a genetic disease involving an atypical development of the nervous system (Bumiller 2009;Hacking 2002;Nadesan 2005;Silverman 2008). Among parents, biological explanations are preferred because they decrease feelings of guilt (Chamak 2008;Farrugia 2009). In the 1960s psychoanalytic discourse constructed autism as the result of "cold" mothering, and the "refrigerator mother" theory diffused through popular psychology.…”

Crying in the park: Autism stigma, school entry and maternal subjectivity

“…al. 2005;Farrugia 2009). Others have been specifically interested in the dynamics of maternal stigmatisation.…”

The stigma perceived by parents of intellectual disability children: an interpretative phenomenological analysis study

“…20 Farrugia found that families with autistic children changed their social environment as a result of stigmatization and lost almost half of their friends. 21 In this study, it is thought that the reason for parents isolating themselves may be disapproval/exclusion by their friends. It is important to educate the community in this respect.…”