COVID-19 Related Challenges and Advice from Parents of Children with Autism Spectrum Disorder

Abstract

With the rise of the COVID-19 pandemic and shelter-in-place, families with children with autism spectrum disorder (ASD) face a unique set of challenges related to a diverse set of issues. A qualitative study was conducted in the form of semi-structured interviews from fifteen parents of children and adolescents from a non-public school for children with ASD. Questions covered the following topic areas: general COVID-19 experiences and concerns, changes in the child’s mood and behavior, changes in parent mood and behavior, and coping/advice. Quotes and descriptions from the participants were reviewed and grouped into thematic areas. Findings showed that parents of children with ASD are facing a wide range of challenges, including explaining COVID-19 and safety precautions to their child in a comprehensible way, assisting with e-learning, and guiding their child back into social situations and the community. As children with ASD have difficulties with transitions, parents stated the importance of creating structure in the home by creating schedules and boundaries, while allowing for flexibility as to not over enforce the rigidity children with autism often face. Advice on coping with the additional stressors were also shared. Parents recommended finding time for themselves to reset, utilizing support systems, and reflecting on daily pleasures as positive coping mechanisms. This study aimed to both develop an initial guide for families, teachers and clinicians caring for children with ASD and to create awareness in the community about the challenges presented by COVID-19 and shelter-in-place.

Coping with autism during lockdown period of the COVID-19 pandemic: A cross-sectional survey

“…Children going to school regularly before the pandemic showed new-onset behavioral issues during the lockdown, potentially due to sudden unanticipated disruption of routine and structured care similar to other studies. [ 11 23 24 25 26 ] These children were also in contact with the psychiatrist, indicating previously existing behavioral issues and/or better awareness of behavioral issues among parents. These parents also attended training programs and reported positive changes in children, possibly indicating that children going to school regularly also were those with better skills and milder forms of ASD.…”

“…Similar to our study, Parenteau et al also found that having a routine, and creating schedules offer parents opportunities to prevent burnout and facilitate quality use of time at home for individuals with ASD. [ 24 ] However, the proportion of families following such interventions needs to be increased through appropriate interventions.…”

Effectiveness of personal protective health behaviour against COVID-19

“…We believe that mask wearing by "non-sick" people could potentially block the spread of contagious droplets from asymptomatic patients during social activities as well as provide the wearer with a symbol to enhance the awareness of protective measures and generate a sense of safety and well-being. Nonetheless, multiple factors should be taken into consideration before implementing a universal mask policy in a healthy population, including cultural differences, scientific evidence in different settings, adequacy of perceived knowledge on mask use in the general population, adaptation difficulties in people with special needs and, most importantly, the scarcity of resources and logistic support [20][21][22][23].…”

Mental health of children with neurodevelopmental disorders during COVID-19: A brief report of family experiences from a low and middle income country

“…We are also currently facing previously unknown situations like mass temporary unemployment, working from home, online homeschooling, rise in domestic violence, absolute lack of physical contact with friends/family, and restrictions within home space for prolonged periods (Colizzi et al, 2020;Di Renzo et al, 2020;Frankova, 2020;Kawabe et al, 2020;Parenteau et al, 2020). In parallel, fear of contracting the virus is still widely prevalent (Rajkumar, 2020;Roy et al, 2020;Singh et al, 2020).…”