Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis
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ORIGINAL PAPER
Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID‑19 Crisis Janessa Manning1 · Joseph Billian2 · Jill Matson1 · Colleen Allen1 · Neelkamal Soares3 Accepted: 12 October 2020 © Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Caring for an individual with autism spectrum disorder (ASD) in ideal circumstances can be stressful, and the Coronavirus disease (COVID-19) pandemic created a high degree of disruption to life and stress to families living with an individual with ASD. We conducted an online survey of families in Michigan that revealed higher levels of stress in caregivers of younger individuals with ASD and those with greater severity of ASD symptoms. Stress around therapeutic service disruption, finances, and illness predominated and greater stress was reported for caregivers of individuals receiving greater intensity of services pre-COVID-19. Respondents voiced concerns about receiving respite care during COVID-19, and those expressing interest in respite also reported greater symptom severity in the person with ASD. Keywords Autism spectrum disorder · COVID-19 · Families · Stress Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication along with restricted, repetitive patterns of behavior, interests, or activities (American Psychiatric Association 2013). The reported prevalence of ASD has continued to increase in recent years, with current estimates now 1 in 54 children in the United States (US) (Maenner et al. 2020). Parenting a child with ASD can be stressful (Bonis 2016); meeting the needs of individuals with ASD can be challenging due to the severity and chronicity of the condition, the mental health comorbidities, intensive interventions needed by persons with ASD and the difficulty obtaining services (Vohra et al. Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10803-020-04760-5) contains supplementary material, which is available to authorized users. * Neelkamal Soares [email protected] 1
Autism Alliance of Michigan, Bingham Farms, MI 48025, USA
2
Division of Epidemiology and Biostatistics, Western Michigan University Homer Stryker M.D. School of Medicine, 1000 Oakland Drive, Kalamazoo, MI 49008, USA
3
Pediatric and Adolescent Medicine, Western Michigan University Homer Stryker M.D. School of Medicine, 1000 Oakland Drive, Kalamazoo, MI 49008, USA
2014). In fact, caring for a child with ASD is associated with greater parenting stress than any other disability (Hayes and Watson 2013), and caregivers also endure significant financial burden in the process (Kogan et al. 2008). Coronavirus disease 2019 (COVID-19) is caused by a novel virus that results in severe acute respiratory symptoms, and it developed into a global pandemic impacting more than four million people in the five months since it was first identified in December 2019 (Johns Hopkins University Center for Systems Science and En
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