An Overview of the Experience of Immigrant Families of Children with an Autism Spectrum Disorder : From the Diagnosis to Early Intervention

Background: Studies report that immigrant families of children with Autism Spectrum Disorder (ASD) have greater difficulty accessing, using and adhering to intervention services offered to their child. Although it is important to document the experience of immigrant families in order to better support them, there are currently few research analyzing their experience and ways to improve adapted services.

Objectives: This presentation will present the results of two studies conducted with immigrant families of children with ASD living in Montreal (Canada).

Study 1 : The aim of the first study is to describe the quality of the service trajectory of immigrant families living with a child with ASD, from the first suspicions to the moment they accessed services.

Study 2: The second study focussed on parental stress and family quality of life among immigrant parents of children with ASD during the waiting period, between the diagnosis and intervention services.

Methods: Study 1: Twenty-four families completed a questionnaire evaluating their trajectory and participated in a semi-structured interview during which they described how they experienced public health services. Qualitative and quantitative analyses were done in order to describe their satisfaction and trajectory of services, as well as to identify the facilitators and the barriers to accessing services.

Study 2: Twenty-four mothers and seventeen fathers completed the Parental Stress Index (PSI) and twenty-nine mothers and twenty-three fathers completed the Beach Center Family Quality of Life scale.

Results: Study 1: Preliminary results indicate that families have a neutral overall satisfaction of their trajectory. The barriers most often mentioned by families were the waiting period for diagnostic and early intervention as well as social isolation. Parental advocacy and education as well as competency and expertise of professionals were identified as facilitators.

Study 2: The results highlight a high parental stress level (75% exceeded the clinical cut-off) and a poor or neutral family quality of life as well as a lack of social support.

Conclusions: The results of these two study show the importance of developing appropriate services in order to meet the needs of immigrants families of children with ASD. Thus, in addition to these results clinical recommendations regarding the organization and enhancement of a culturally sensitive and relevant offer of services will be presented.