‘They Even Have the Capacity, but the Places Aren't Prepared to Receive Them’: Community Environment and Participation of Autistic Children in a Family-Engaged Research Analysis

Abstract

To examine the associations between community environmental barriers and support and the participation of autistic children, and to interpret these findings from the perspective of caregivers engaged as research partners. This cross-sectional observational study employed a mixed-methods design. The first phase comprised analytical and exploratory quantitative analyses. Caregivers of autistic children aged 5–12 years reported participation outcomes—frequency, involvement, and desire for change—using the Brazilian version of the Participation and Environment Measure for Children and Youth (PEM-CY) and CARS-BR with 80 caregivers of children aged 5–12. Phase 1 involved path analysis to test associations between community environment, income, autism severity, and participation (frequency, involvement, desire for change). Phase 2 employed a constructivist-interpretivist approach, where five caregivers acted as research partners to interpret quantitative results via reflexive thematic analysis. Quantitative analysis showed no statistically significant associations between environmental factors and participation outcomes, despite frequent reports of barriers. In Phase 2, research partners identified social inclusion, safety, and logistical constraints as critical. They highlighted that low participation often stems from unwelcoming contexts and limited informal peer interaction, rather than a lack of desire to engage. Integrating findings from both phases, the study suggests that the low participation of autistic children in community settings may reflect, at least in part, protective choices adopted in response to contexts perceived as unwelcoming, unsafe, and insufficiently supportive, rather than a lack of desire for participation.