Enacting autism: Immigrant family negotiations with nosology in practice

Abstract

This article describes how autism spectrum disorder is experienced in the context of immigrant families and how the meaning of this condition, proposed by professionals in the host country, is negotiated between families and healthcare providers. The study sample consists of 44 parents of different nationalities and their 35 children with autism spectrum disorder (ASD) living in a socioeconomically deprived neighborhood of Montreal, Canada. Individual parent interviews were audiotaped and transcribed for subsequent analysis. Results suggest that – although they may sometimes be a source of anxiety – the uncertainties regarding the etiology of ASD, as well as the gap between the explanatory models (EMs) proposed by host country professionals and the impressions of parents, seem to increase the capacity of families to resist the imposition of what they perceive as external categories. Parents perceived the day-to-day difficulties associated with their child's condition as a form of social exclusion that compromised their child's future and independence. These day-to-day difficulties were also described as directly affecting the parents' social life, constituting an important emotional and physical burden. When talking about their children, parents described the painfulness of their experiences, but also discussed how their autistic child had transformed and shaped their lives. Overall, these results show how the disease is “enacted” in the day-to-day life of parents; and suggest that such an embodied understanding of ASD may sometimes represent a form of re-appropriation of power by families faced with adversity.