Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort

White, L. Casey; Law, Kiely; Daniels, Amy; Toroney, Jaimie; Vernoia, Brianna M.; Xiao, Sabrina; Feliciano, Pamela; Chung, Wendy K.

doi:10.1007/s10803-020-04816-6

Cited by 119 publications

(171 citation statements)

References 20 publications

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“…These issues include the impact of isolation; changes in education and employment; public understanding of adjustments to regulations for autistic people; and, now, how earlier policies have impacted on the accessibility of vaccination programmes and strategies. In particular, the mental and physical health impacts of COVID-19 should be assessed, given high reported rates of pandemic-related stressors among families with a child with autism, [104][105][106] and possible long-term mental and physical health implications of COVID-19 infection. 107 108 Furthermore, longitudinal data on health and social care access and the impact of disruptions to education and community facilities before, during and after the COVID-19 pandemic may reveal critical areas for addressing future policy and practice.…”

Section: Learning From Best Practice and Future Directionsmentioning

confidence: 99%

COVID-19 health and social care access for autistic people: European policy review

et al. 2021

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BackgroundThe global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services.MethodsWe reviewed policies from 15 European member states, published in March–July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers.ResultsAutistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support.ConclusionsThe COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law.

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Section: Learning From Best Practice and Future Directionsmentioning

confidence: 99%

COVID-19 health and social care access for autistic people: European policy review

et al. 2021

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“…April is Autism Awareness month, yet in the spring of 2020, COVID-19 dominated the headlines and mental health leaders acknowledged the significant changes impacting the daily lives of individuals in the autism community (Gordon & Borja, 2020), warning that alteration of routines can lead to increased stress and difficulty coping. A brief online survey of parents (93% female) of children with ASD (80% male, mean 12-years, 21% had ASD, and intellectual disability) reported that despite some positive impact of social distancing, families experienced significant upheaval (White et al, 2021). While such surveys are helpful, it is imperative that evidence be collected during the pandemic via rigorous approaches to learn directly from individuals with autism and their care providers to better prepare for future outbreaks (Courtenay & Perera, 2020).…”

Section: Introductionmentioning

confidence: 99%

The impact of COVID‐19 on stress, anxiety, and coping in youth with and without autism and their parents

et al. 2021

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In the wake of COVID‐19, the world has become a more uncertain environment—a breeding ground for stress and anxiety, especially for individuals with autism spectrum disorder (ASD). The study examined stress, anxiety, and coping in a data‐driven, real‐time assessment of 122 youth with and without ASD and their parents at the height of the COVID‐19 shutdown and three‐months later. Standardized measures were administered to ascertain stress and coping explicitly related to the pandemic (RSQ COVID‐19‐Child [self‐report], Adult [self‐report from the guardian of youth], Parent [report about child]) and anxiety (STAI‐C, STAI‐A). Multivariate, univariate analyses of variance and hierarchical regression were used. ASD youth endorsed more Trait anxiety and response to specific stressors (e.g., virus). Caregivers of youth with ASD (Adults) self‐reported higher anxiety, yet scores were elevated for both groups. Adults of youth with ASD reported more stress, especially related to the virus, access to healthcare, and concern for the future. In the TD group, youth and adults used more Primary and Secondary Control Coping whereas ASD youth and adults used more Disengagement Coping. Adult stress was the primary predictor of parent perception of child stress as well as Child self‐reported stress. While the ASD group was consistently high compared to the TD group, there were no significant changes over time for stress or anxiety. Results reveal striking differences in youth with ASD and their parents regarding stress, anxiety, and coping. Findings highlight the need for essential support, access to services, and strategies to enhance psychological and emotional well‐being. Lay Summary This study examined stress, anxiety, and coping related to the COVID‐19 pandemic in 61 youth with autism spectrum disorder (ASD) and 61 youth with typical development (TD) and their parents. Results showed that ASD youth reported more anxiety and stress. Adults of youth with ASD indicated higher self‐reported anxiety and stress than adults of TD youth. TD youth and their parents reported using more adaptive coping strategies. Findings highlight the need for strategies to enhance psychological and emotional well‐being.

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“…To date only a few studies (Ersoy et al, 2020;Esentürk, 2020;Mannging et al, 2020;Pavlopoulou et al, 2020;Stankovic et al, 2020;White et al, 2021), to our knowledge, have described the mental health and well-being of caregivers of autistic people during the pandemic. Manning and colleagues (2020) investigated the COVID-related experiences of 471 autistic individuals and their families in the United States using an online survey.…”

mentioning

confidence: 99%

Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study

Friesen

Weiss

Howe

et al. 2021

J Autism Dev Disord

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Many caregivers of autistic people experience mental health issues, and the impact of disruptions due to COVID-19 may present additional challenges for these individuals. This study characterized caregiver stress, anxiety, and resilient coping during COVID-19 and investigated the impact of COVID-19 disruptions, demographic variables, and resilient coping on mental health. The majority of caregivers reported some degree of disruption associated with COVID-19, and more than half reported moderate levels of stress and high anxiety. Resilient coping did not emerge as a moderator between COVID-19 disruptions and caregiver mental health, but instead had a direct effect on outcomes. Future research is needed to understand additional factors impacting the mental health of caregivers of autistic people during the COVID-19 pandemic.

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Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort

Cited by 119 publications

References 20 publications

COVID-19 health and social care access for autistic people: European policy review

COVID-19 health and social care access for autistic people: European policy review

The impact of COVID‐19 on stress, anxiety, and coping in youth with and without autism and their parents

Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study

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