Book Description

Children with autism spectrum disorder (ASD) are uniquely vulnerable to any adverse effects of the coronavirus (COVID-19) pandemic due to greater healthcare needs, dependency on resources and services, and difficulty in adapting to environmental changes. Caregivers of children with autism also experience substantial stress, even under ideal conditions, and have simultaneously been negatively impacted by the pandemic based on disruptions in routines and social infrastructures that typically bolster against mental health problems. Comprising data from two studies, this dissertation reports changes throughout the pandemic regarding the adaptive and developmental health of children with autism; access and barriers to telehealth; and the emotional wellbeing of their parents, with an additional aim to determine whether clinical or sociodemographic characteristics affect outcomes. Study 1 was a secondary analysis of 3,941 parents of children with autism between the ages of 3- and 10-years-old, shared from the Simons Foundation Powering Autism Research for Knowledge (SPARK) national autism project. Study 2 consisted of primary data collected from 85 parents of children with ASD within this same age range, recruited throughout the United States. Both studies obtained direct responses from caregivers to comprehensively explore challenges presented by the COVID-19 pandemic and characterize the outcomes of children with ASD and their families. Participants were given an online battery of standardized and novel measures, administered across Baseline and Follow-Up timeframes (spanning 1–6 months in Study 1, and 3 months for Study 2). Tests of group and mean differences and regression analyses assessed relations among behavioral characteristics of the children, general experiences and concerns regarding current service delivery, and the impact of the COVID-19 outbreak on parental wellbeing, while quotes and free-response comments were reviewed descriptively for common themes. Results showed children with ASD mostly demonstrated increases in adaptive and self-care behaviors between evaluation points, yet still performed below chronological age-level. Most families faced disruption in autism services due to COVID-19, but transitioning to online/remote delivery has been possible and successful in some instances. Finally, all children and parents experienced negative mental health effects during this time, though the extent of this impact varied based on risk and/or protective factors inherent to each individual family. Results also uncovered demographic disparities in COVID-19-related stressors and outcomes, particularly for parents from a lower educational background, families who are economically disadvantaged, and those residing in smaller geographic areas. Thematic analyses revealed parent concerns surrounding finances, fear of sickness, and the overarching impacts on child development, given the shift in education, therapies, and social interaction opportunities. Positive changes frequently included increased time for family togetherness, reduced academic and social worry in children, and benefits provided by technology. These findings outline the impact of the coronavirus pandemic on the autism population and can guide efforts to maintain and promote health and development while in crisis and inform strategies to limit potential harm in future emergencies. The value of this dissertation is its qualitative and quantitative consideration of both child and caregiver, and emphasis on the importance of ASD services during this critical age of development, recommending both parent and provider training programs as the best method to ensure continuity of care.