In Québec, parents who suspect that their child may have autism spectrum disorder (ASD) can wait up to three years for a diagnostic assessment, which then opens the door to specialized early intervention services and family support. Immigrant families are no exception to this rule; the challenge of integrating into their host society is then compounded by the challenge of coping with the condition of their offspring.
Unfortunately, the scientific literature provides little data on the experiences of these families during early childhood, from 0 to 6 years of age. Mélina Rivard, a professor in the Department of Psychology at the Université du Québec à Montréal, has therefore set about documenting the trajectory of early childhood services (diagnostic period, early intervention, transition to school) for these families, with a view to better supporting them through this process by facilitating their involvement and maximizing their child's response to the treatments offered.
Proactive motivations result from an interest in pursuing a more rewarding career path. In this case, students were seeking better working conditions, personal growth, new learning, or an occupation more in line with their values and interests.
To do so, the researcher and her collaborators followed 24 families from an ethnocultural minority who had a child with ASD throughout this early childhood period. The aim was to paint a comprehensive picture of the barriers and facilitators along the care pathway of these families, from the suspicion of diagnosis to the implementation of the intensive behavioural intervention program in the child's living environment. The families were recruited through two rehabilitation centres in the Greater Montreal area.
The results show that these families experience the same difficulties as Québec families with a child with ASD, but in a more pronounced manner. They face greater barriers to access, given their lack of knowledge about the organization of the system, which they perceive to be complex. These families also raise issues in terms of continuity in their relationships with the various professionals they interact with and the generic nature of some of the interventions received, which do not meet their real needs
Concerned about optimizing access to diagnosis and the use of services by these families, Mélina Rivard's team recently completed a guide explaining the main results of their scientific work. This document will soon be approved by its intended audience, i.e. practitioners and parents of autistic children.