Date Presented 03/26/20
Community participation promotes quality of life and transition to adulthood for adolescents with ASD. This study describes community participation and environmental barriers to and supports of adolescents with ASD compared to typically developing peers using the Participation and Environment Measure—Children and Youth. Results can inform intervention, resource allocation, and policy decisions to best meet the needs of adolescents with ASD.
Primary Author and Speaker: Liron Lamash
Additional Authors and Speakers: Gary Bedell
Contributing Authors: Naomi Josman
PURPOSE: Community participation is an important outcome of rehabilitation interventions and a critical indicator of quality of life (Biggs & Carter, 2016); however, few studies have focused on community participation patterns of adolescents with autism spectrum disorder (ASD) or the environmental factors that influence participation. This study aims to describe participation patterns of adolescents with ASD compared with their typically developing peers in their community life and to identify the supporting or hindering environmental features.
DESIGN: For this descriptive study, participants were recruited using a convenience sample through the Israeli educational system after receiving ethical approval from the academic institution’s ethics committee and the Ministry of Education Chief Science Office. The first group comprised 59 participants with approved diagnosis of ASD without intellectual disabilities, 49 boys and 10 girls (M = 14.51 years, SD = 1.54). The other group consisted of 188 typically developing adolescents, 79 boys and 109 girls (M = 14.76 years, SD = 1.88). All participants were 7th to 12th grade students in 6 mainstream secondary schools, in which the adolescents with ASD attended dedicated classes. The study excluded adolescents with significant physical or mental conditions that limited their movement or activity.
METHOD: Data were collected using a demographic questionnaire and the community section of the Participation and Environment Measure–Children and Youth (PEM-CY; Coster, Law, Bedell, Teplicky, & Lin, 2011). The PEM-CY assesses adolescents’ participation in various activities and environmental factors that support or hinder participation in home, school, and community contexts. Data analyses conducted using SPSS version 21.0 included descriptive statistics for demographics and PEM-CY scores, and t-tests (with Bonferroni correction) and Chi-squared tests to examine PEM-CY item between-group score differences. Weighted effect sizes were calculated by Hedges’ g for t-tests and Cramer’s Phi (φ) for Chi-squared tests.
RESULTS: Adolescents with ASD had significantly lower levels of participation in community activities, in both frequency of the various activities (t(245,91) = 7.71, p < .001, 95% CI [0.84, 1.46], g = 1.15) and involvement levels in these activities (t(245,99) = 7.33, p < .001, 95% CI [0.79, 1.41], g = 1.10). In addition, parents of the adolescents with ASD perceived the community environment as less supportive of participation than did parents of the typically developing adolescents (F(1,241) = 36.36, p < .001, ηp2 = .13). In the group of adolescents with ASD, most (78% to 83%) parents reported that cognitive and social activity demands are the main barriers to their child’s community participation, whereas only 10% to 16% of parents of typically-developing peers reported these factors as barriers.
CONCLUSION: This study highlights the low community participation levels of adolescents with ASD and describes the environmental factors reported as inhibitors. Parents reported the activities’ demands as the most hindering factors. Future research should include adolescents’ perspectives to ensure that their preferences are considered in interventions.
IMPACT STATEMENT: This study adds knowledge about community participation patterns and environmental supports and barriers of adolescents with ASD, with the PEM-CY a powerful tool to assess them. Results can inform intervention, resource allocation, and policy decisions to meet the needs of adolescents with ASD.
References
Biggs, E. E., & Carter, E. W. (2016). Quality of life for transition-age youth with autism or intellectual disability. Journal of Autism and Developmental Disorders, 46, 190–204. doi.org/10.1007/s10803-015-2563-x
Coster, W., Law, M., Bedell, G., Teplicky, R., & Lin, C. Y. (2011). Participation and environment measure for children and youth (PEM-CY). Retrieved from https://www.canchild.ca/system/tenon/assets/attachments/000/000/677/original/Khetani2011Colorado_PDF.pdf
