Participation of children with autism spectrum disorder : comparing the perspectives of children and their caregivers

Abstract

Participation in activities in one’s home, school, and community setting is a human right that positively affects one’s well-being. However, children with disabilities often do not enjoy this human right. The bulk of existing participation research includes proxy interviews with caregivers to better understand the participation patterns of children with disabilities. There is a need to include the voices (self-reported) of children with all disabilities, including those with children with autism spectrum disorder (ASD) in participation research. Children with ASD present with sensory and communication challenges which may make obtaining information about their subjective participation experiences more methodologically challenging. The current study aimed to describe and compare the perceptions of children with mild to moderate autism spectrum disorder (ASD) and the perceptions of their primary caregivers regarding the children's participation, including barriers and facilitators of participation, in home, social and community activities.