Experience of Autistic Children and Their Families During the Pandemic: From Distress to Coping Strategies

Background. As the COVID-19 pandemic unfolded during Spring 2020, families experienced multiple upheavals, including lockdown, school closures and ruptures in professional services. We wanted to better understand the experience of autistic children and their families in times of crisis. Methods. 109 parents of autistic children (2.6–18 years) and 56 autistic children (5.75–18 years) from Quebec (Canada) completed an online survey about needs, barriers and facilitators to coping with the pandemic. Quantitative data were analyzed using ANOVA, chi-squares and open-ended questions with thematic analysis. Results. Half of the parents and children considered the pandemic to be a stressful time. Parents who expressed concerns about their child’s development and difficulty managing their child’s behaviors during the pandemic were significantly more likely than other parents to report these concerns before the pandemic, along with the following challenges during the pandemic: social isolation, having to pursue academic goals, feeling powerless over their child’s behaviors and no routine during the pandemic (all p < 0.05). Maintaining social relationships and implementing appropriate strategies, such as a routine, were identified as facilitators by both parents and children. Among children, 92.9% associated technologies with their well-being, but many parents saw too much access to electronics by their child as a barrier, suggesting a need to better understand and use autistic interests. Conclusion. Both autistic children and their parents identified social isolation as one of the main difficulties during the pandemic. We also need to consider autistic characteristics and children’s interests to implement emergency accommodations and services.