1. Objectifs

Intentions :
«The objective of the present paper is to analyze how autism spectrum disorder [ASD] is experienced in the context of immigrants’ families. It analyses both the parents’ explicit EMs [explanatory models], within their context of expression, and how the parents construct and transmit their experience of ASD through the multiple ways in which their child’s condition affects their lives. More specifically, it examines the relationship between the parents’ discourse on ASD and the ways through which ASD is incorporated into the day-to-day life of individuals, both the autistic children and their families.» (p. 329)

2. Méthode

Échantillon/Matériau :
«The target population consisted of the parents of migrant children with autistic traits who had been referred to a primary care facility by professionals involved with the family, such as psycho-educators, speech therapists, social workers, pediatricians, or teachers. [...] A total of 44 parents were interviewed in the study: 32 mothers and 12 fathers [who all lived in Montreal, Canada]. [...] The parents originated from 33 different countries in Asia, Africa, Latin America and the Caribbean, Europe, the Arab world, and North America.» (p. 329-330)

Instruments :
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé

«The accounts of parents in this study show how the ways of dealing with ASD, the strategies that each individual uses, produce a range of different negotiations. Autism is altered as a function of daily effort to articulate experience that is negotiated among patients, families, clinicians and others. In each of these negotiations, suffering may be transformed. The space in which this negotiation occurs, the settings, interactions, teaching materials used, solutions found, metaphors deployed to explain emotions, and the studies and research evidence disseminated on the Internet or through scientific papers on ASD, all provide elements that influence parents’ courses of therapeutic action. The affective quality of family life is changed by autism. […] What the parents talked about was the dimension of ASD as a reality within their practices. It is in the day-to-day routine that [it is possible] to grasp how ASD is enacted. When parents talk about their children, they describe not only their ideas about ASD or their experiences of suffering, but they also reveal how profoundly ASD penetrates into their lives and changes their families.» (p. 341)