Psychological distress among caregivers raising a child with autism spectrum disorder during the COVID‐19 pandemic

Abstract

The COVID‐19 pandemic may disproportionately impact parents of children with autism spectrum disorder (ASD). Loss of services and supports, heightened fears about increased infection rates, and disruption of daily routines likely adversely affect the well‐being of children with ASD and their families. The goal of this study was to examine differences in psychological distress–as defined by symptoms of anxiety, depression, loneliness, and hyperarousal–between parents raising a child with ASD and parents in the US as a whole during the early stages of the pandemic (March–April 2020). Parents raising a child with ASD ( n = 3556) were recruited through SPARK, a national ASD research registry, whereas a representative sample of parents in the US ( n = 5506) were recruited from the Pew Research Center's American Trends Panel. All data were captured via online surveys. Descriptive statistics and multivariable logistic regressions examined psychological distress at the item and summary score level. Parents of children with ASD reported higher levels of overall psychological distress (48% vs. 25%; aOR = 1.60, 95% CI: 1.32, 1.84, p < 0.001). Hyperarousal, or feelings of panic when thinking about COVID‐19, was particularly prevalent among parents of children with ASD compared to parents in the US (25% vs. 9%; aOR = 2.38, 95% CI: 1.83, 3.07, p < 0.001). Findings highlight the importance of considering the policies and practices that contribute to poor mental health in parents, particularly those raising a child with ASD, to ensure mental health services remain accessible. Lay Summary This study examined the mental health of parents raising a child with ASD during the early stages of the COVID‐19 pandemic. Results demonstrated substantially higher levels of psychological distress, particularly those related to feelings of panic, among parents raising a child with ASD when compared to parents in the US as a whole. These data suggest the need for ensuring mental health services are accessible to parents, particularly those raising a child with ASD, during and after the pandemic.

Analysis of the SPARK study COVID‐19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services

“…General findings from the survey in children and adults with ASD have been reported by White et al ( 2021 ). Parental stress measures have been briefly reported recently by Kalb et al ( 2021 ).The goal of the present study was to examine the differential early impact of COVID‐19 on subgroups of children with ASD based on various demographic (age, sex, geographic location, etc. ), child‐related (social communication, language, cognitive, functional, and motor impairments as well as repetitive behavior severity), and parent‐related (i.e., parent's past mental health) factors.…”

“…In Spring 2020, families faced significant challenges due to substantial loss of services, alterations in methods of offering services (telehealth vs. face to face), parents having to play an active role in their child's virtual therapy/schooling without much support, stresses related to working from home, unemployment, or caring for multiple children. Together, these challenges may have further affected children's and parent's emotional and mental health outcomes (Bellomo et al, 2020 ; Chen et al, 2020 ; Kalb et al, 2021 ; Nonweiler et al, 2020 ; Spinelli et al, 2020 ). As clinicians, educators, and researchers started rethinking therapeutic service, learning, and research delivery models including protocols in this author's lab (Bhat et al, 2021 ; Srinivasan, Su, et al, 2021 ; Su et al, 2021 ) many have chosen a hybrid delivery model – a combination of face to face interactions with precautions or a remote/virtual mode of care/education/research delivery.…”

“…General findings from the survey in children and adults with ASD have been reported by White et al (2021). Parental stress measures have been briefly reported recently by Kalb et al (2021). The goal of the present study was to examine the differential early impact of COVID‐19 on subgroups of children with ASD based on various demographic (age, sex, geographic location, etc.…”

Effects of the Early Phase of COVID-19 on the Autistic Community in Sweden: A Qualitative Multi-Informant Study Linking to ICF

“…Additionally, studies are beginning to elucidate how these outcomes are affecting parental resources. Comparative, population-based survey data show greater psychological distress (including symptoms of anxiety, loneliness, and hyperarousal) in parents of children with in comparison to parents of children without autism during the pandemic [30]. Summarizing outcome studies, Yalmaz et al [31] describe that parents' mental health is related to the child's ability to adapt to changing routines, dealing with social distancing and enhanced hygiene practices, and serious behavioral disruptive behaviors but also economic difficulties.…”

A qualitative examination of the impact of the COVID-19 pandemic on children and adolescents with autism and their parents

“…Considering the additional resources and support required by many individuals with ASD ( Kalb et al, 2021 ), this population was especially vulnerable to the unprecedented challenges introduced by the Coronavirus disease (COVID-19) pandemic. In a review of the literature, Stough et al, 2017 found that prior to the pandemic, research on the impact of disasters and other emergency events on individuals with ASD was markedly limited.…”