The life path of parents and of their children presenting an autism spectrum disorder (ASD)
Objectives: This research aims to study parents’ experiences (n = 41) of their autistic child. in regards to different aspects of his development, such as diagnosis, health, family, interventions, child care services, school and awareness of the disorder. Methods: In order to ensure variability in the levels of severity of the disorder, forty-one parents of persons with an Autism Spectrum Disorder (ASD) were recruited either through the Fédération québécoise de l’autisme (FQA) or through a convenience sample. Participants were asked to complete a 192-item questionnaire covering respondents’ demographic information, the child’s diagnosis as well as information regarding health, family, respite services, child care setting, interventions, school setting, adolescence, adulthood, individual rights and awareness of the disorder. This questionnaire was reviewed by ten doctoral students in psychology and by three ASD experts to assess the relevance, the correctness and the richness of the questions. The questionnaire was adapted accordingly and was administered to 10 parents within the framework of a qualitative study. Results: This study revealed that parents’ primary concerns regarding their child’s development regarded language development, visual contact, isolation and motor abilities. These parents also mentioned feeling positive emotions, such as pride and joy, as well as negative emotions, such as worries about their child’s future. Only a few of these families used respite services and most deemed intervention services as insufficient; about half of parents were satisfied with the services provided at school. Moreover, most of adults with ASD have always lived with at least one of their parents; some have occupations, but their salary is minimal. In terms of disorder awareness, parents mentioned that they would have preferred that their child not have the disorder in order for them to live an easier life. Conclusion: Data obtained from this study serves to provide a better comprehension parents’ experiences, which can contribute to adapting the services for families of children living with ASD. In addition, an increase in public funding for intervention and respite services is recommended as it was considered insufficient.