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"You always have to be there." An analysis of parental work in the context of autism

Catherine des Rivières-Pigeon, Isabelle Courcy

Research Framework : Having a child with an autism spectrum disorder (ASD) is a complex situation that substantially transforms the reality of these families. The workload required to take care of the children is a central aspect of the lives of these families that needs to be better documented. So far, the characteristics of this « caring work » have rarely been examined from the perspective of implicated family members.

Objectives : This article presents an in-depth analysis of the domestic and care work that parents of children with ASD living in Quebec do to take care of their children’s special needs.

Methodology: An original methodology, combining semi-directed interviews and a participatory method of data collection, was developed to analyze the domestic and care work that parents of ASD children do on a day-to-day basis. The research was carried out with 15 families (13 mothers and 9 fathers) with various profiles.

Results : The results show the burden of the work carried out by the parents and the expertise that they need to acquire to achieve it. They also reveal the specialized and specific nature of this work, and the central role of « upstream work », a form of work that prepares the direct tasks to be carried out with the child.

Conclusions: This in-depth analysis of the tasks performed by parents shows that a substantial proportion of this work, although complex, affects even the most basic aspects of parental responsibilities such as ensuring that the child is clean, nourished and safe.

Contribution: The contribution of this article is to expose the experiences of parents of children with ASD beyond the usual representations that often present them as vulnerable and helpless, by revealing the complex work that they do to meet the special needs of their children.