Participation patterns of adolescents with autism spectrum disorder compared to their peers: Parents’ perspectives

Abstract

Introduction Although participation is an important outcome of rehabilitation interventions and a critical indicator of quality of life, few studies have focused on the participation patterns of adolescents with autism spectrum disorder in their daily activities or the environmental factors that influence such participation. This study aims to describe the participation characteristics of adolescents with autism spectrum disorder compared with typically developing peers in home, school and community and to identify supporting or hindering environmental features. Method The Participation and Environment Measure for Children and Youth was administered to 59 parents of adolescents ( M = 14.51 years) with autism spectrum disorder and a control group of 188 parents of typically developing adolescents in Israel, and the results were compared. Results Adolescents with autism spectrum disorder showed lower participation levels at home and school, and much lower levels in the community, preferring solitary activities that involve technology. Their typically developing peers participated in more activities that involved social interaction skill. In addition, parents of adolescents with autism spectrum disorder rated more environmental factors as barriers in all environments. Conclusion Participation gaps between adolescents with autism spectrum disorder and their typically developing peers should be considered when developing interventions, allocating services and creating policies to meet the unique needs of adolescents with autism spectrum disorder.

Exploring Caregiver Perspectives of Social and Motor Skills in Children With Autism Spectrum Disorder and the Impact on Participation

“…Of specific emphasis was the notion of context-specific participation levels, such that highest levels of participation were observed at home, relatively lower levels in school, and lowest levels in the community. Consistent with previous questionnairebased work (Lamash et al, 2020), children who were described as facing greater challenges did not often engage in communitybased activities. While individual activities were most common in all contexts, group activities typically included family members and were most often described in the comforts of the family home.…”

“…Related to the notion of different perspectives of participation, caregivers described varying levels of participant among their children with ASD at home, school, and in the community. Consistent with quantitative reports of participation frequency and involvement (Simpson et al, 2018;Lamash et al, 2020), caregivers discussed participation levels as lower than expected based on societal norms and observations of typically developing children. Of specific emphasis was the notion of context-specific participation levels, such that highest levels of participation were observed at home, relatively lower levels in school, and lowest levels in the community.…”

“…Consistent with the notion of conditional participation (Arnell et al, 2018), a threshold for participation and specific factors supporting participation were revealed. Features of the environment were described as influential moderating factors; in particular, managing sensory (e.g., noise, lighting) and physical features (e.g., space definition and/or organization) were the most reported barriers to social and physical activities in the current study (Ben-Sasson et al, 2009;Lamash et al, 2020). As a result, caregivers reported more familiar, consistent, and predictable activities were less challenging to navigate and thus facilitated participation for their children.…”

“…Decreased participation levels and less variety in activities are reported among children with ASD compared to both typically developing children and children with other developmental disabilities (Shattuck et al, 2011;Askari et al, 2014;Little et al, 2014;Taheri et al, 2016;Egilson et al, 2018). For school-aged children and adolescents with ASD, participation levels are lower at home and school and much lower in the community (Simpson et al, 2018(Simpson et al, , 2019Lamash et al, 2020). Participation in unstructured and recreational activities, hobbies, after-school peer socialization, and physical activities (e.g., sports teams and clubs) are key areas of concern (Hilton et al, 2008;Hochhauser and Engel-Yeger, 2010;Potvin et al, 2013;Little et al, 2014;Scharoun et al, 2017;Egilson et al, 2018).…”

Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries

“…Similar research with parents of children without disability did not nd problems in answering the environmental sections [24]. It could be that parents of children with disabilities, who face more environmental barriers compared to parents of children without disabilities [23,49,50], display more di culties in answering questions in the environment section. Finally, the selected guidelines [28] did not contain "operational" or "measurement" equivalence, as described in other guidelines [51] and this may limit the generalizability of the ndings.…”