The impact of COVID-19 on individuals with ASD in the US: Parent perspectives on social and support concerns

Abstract

The COVID-19 pandemic’s disruptions to daily routines and services have proven especially challenging for children with autism spectrum disorder (ASD) and their families. The current retrospective study aimed to determine the impact of the COVID-19 pandemic’s social environmental changes on parental ratings of personal and child concerns about family conflict, opportunities for social interaction, and loss of institutional support (school and therapy services). Analyses of responses from families with ASD in the US determined differences in concerns across three time points which were measured simultaneously: prior to COVID-19, at the start of COVID-19, and at the time of survey completion. From our sample of 246 school-aged children, parents retrospectively reported significantly increasing levels of concern for both themselves and their children over time, with parents’ personal concern levels rated consistently higher than their ratings of their child’s level of concern. Concerns about loss of institutional support were higher for parents of children reported as having co-occurring intellectual disability. Further, parents of younger children also reported more concerns about loss of services, as well as more social concerns. For parent ratings of child concerns, children who were reportedly aware of COVID-19 were determined to have higher levels of social concerns and concerns about loss of institutional support. Meanwhile, the child’s age and gender did not impact their parent ratings of child concerns. The increased level of parental and child-perceived concerns over the course of the pandemic suggests a need for improved service delivery and support for these families. The high levels of concerns observed in the current study provide support for the need to assess families’ priorities and tailor services to best meet families’ needs. This will potentially increase the quality of life of family members, and improve ASD services across the lifespan, and improve outcomes.

Efficacy of coping mechanisms used during COVID-19 as reported by parents of children with autism

“…With respect to isolation , while this is considered a maladaptive strategy for the purpose of this study, the significant positive correlation between its frequency and efficacy suggest it may be adaptive given the context of the pandemic. Specifically, research has documented increases in conflict among families of children with ASD during the pandemic due to stay-at-home policies [ 12 , 13 ]. Isolation may be an efficacious way of diffusing tension for older children who are more able to successfully utilize this strategy.…”

“…We further restricted our sample to include only school-age children with ASD, ages 3 to 21 (n = 246), who were reported by their parents as being aware of the COVID-19 situation (n = 133; 43.04% of the U.S. sample) ( Table 1 ). Because deficits in abstract thinking among children with ASD can impact their ability to understand COVID-19 related stay at home orders [ 16 , 18 ], several studies conducted during the pandemic have considered COVID-19 awareness status [ 12 – 14 , 42 , 43 ]. As our aim was to assess how children with ASD were coping with the pandemic, we included only those children who were aware of the pandemic, as they are more likely to be able to employ the various coping strategies assessed in the survey.…”

“…Studies performed regarding the possible emotional and behavioral effects of COVID-19 on children who were diagnosed with ASD commonly reported increases in anxiety and worries, particularly regarding social isolation, physical distancing, and school [9,[11][12][13][14]. According to researchers who surveyed parents of children with ASD, the stress brought on by the pandemic has also been associated with increases in behavioral problems, and an exacerbation of core ASD symptoms, in terms of both frequency and intensity [9,[15][16][17].…”

Prevalence of Pediatric Autism Spectrum Disorder in Korea Using National Statistics Including the COVID-19 Pandemic, 2011 to 2021

“…As an explanation for the increased prevalence of ASD during the COVID-19 pandemic, we suggest that measures like mask-wearing during the COVID-19 pandemic might have interfered with children's development, especially language development, in which children learn by looking at their caregivers' mouths and facial expressions [29,30]. Due to self-isolation and social distancing to prevent the spread of infection, professional education hours have decreased in daycare centers, and children with ASD symptoms have experienced an aggravation of psychiatric and behavioral problems [31,32]. Another possibility for the increased prevalence of ASD may be that medical visits for ASD have increased because families have spent more time at home during the COVID-19 pandemic, making parents more likely to perceive abnormal behavior.…”

Anxiety in families of individuals with neurodevelopmental conditions in the early months of the COVID-19 pandemic in Switzerland

“…An international network of collaborators translated and disseminated the questionnaire in 16 languages, eventually reaching more than 10,000 families in 78 countries around the world. The questionnaire (original English version available in Supplementary Materials) and database have been used for other papers that have been published (Su et al, 2021;Furar et al, 2022;Sideropoulos et al, 2022aSideropoulos et al, , 2022b. One parent of each family completed the anonymous survey which contained a total of 299 questions.…”