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

Abstract

While the COVID-19 pandemic is ongoing, early outcome studies indicate severe and pervasive global effects of the pandemic and associated measures to prevent the spread of the virus. General population studies, as well as insight into the outcomes for particular groups, will be necessary in order to mitigate potentially long-term effects as well as to prepare for future epidemics or pandemics. The pandemic conditions have been marked by rapid and abrupt changes and unpredictability which are circumstances that leave the autistic population particularly vulnerable to adverse outcomes following the distinctive features of the diagnosis. Studies are only beginning to delineate the outcomes of the global autism community and the present study adds to these findings by providing a local, multi-perspective, qualitative analysis of the lived experiences of the Swedish autism community. In this study, autistic youth and adults, caregivers of autistic individuals, as well as representatives of Swedish interest organizations were interviewed. Thematic analysis was performed on the population as a whole and patterns of results were formalized according to the International Classification of Function, Disability and Health (ICF-CY). Participants report wide-ranging adverse outcomes of the pandemic relating to mental health and access to support, participation in daily activities and socialization, education, and work as well as parental resources. However, participants also report positive outcomes relating to a reduction in specific social and everyday demands, and normalization of lived experiences. Additionally, interviews outlined some strategies used to cope during pandemic conditions. Implications of these findings are discussed.

Psychosocial Functioning and the Educational Experiences of Students with ASD during the COVID-19 Pandemic in Poland

“…The stress worsened their well-being and resulted in increased tension and feelings of difficulty in mental functioning. Other studies [ 47 , 48 , 57 , 58 , 59 ] reported similar findings, confirming that increased stress in situations of isolation was experience by many respondents with ASD.…”

“…Results of his study indicate that both positive and negative consequences can be observed in the psychosocial functioning of people with ASD during the pandemic. The ambiguous impact of lockdown has been confirmed by a number of studies in which individuals with ASD as well as their families indicate both positive effects related to the reduction of social demands and normalization of daily life, as well as a negative impact of the pandemic on their mental health [ 48 , 54 , 55 , 56 , 57 , 58 ].…”

“…However, participants also indicated positive effects related to a reduction in some social demands and the normalization of daily life [ 58 ]. For individuals who experience relationship difficulties, the marked decrease in social interactions increased their sense of well-being, which may be explained by the clinical features of ASD [ 48 ].…”

Depressive Anxiety Symptoms in Hospitalized Children with Chronic Illness during the First Italian COVID-19 Lockdown

“…Although the knowledge of the effects of the COVID-19 pandemic on mental health in the general population is now well established, less is known about its impact on specific and vulnerable populations. This information is particularly important to further enhance the potential to prepare for future epidemics and pandemics, as well as providing targeted intervention and support measures for particularly affected groups, such as children with chronic illness [ 2 ].…”

Home schooling during the COVID-19 pandemic in the United Kingdom: The experience of families of children with neurodevelopmental conditions

“…There is mounting evidence that families of children with neurodevelopmental conditions were worried about their child's academic performance and progress during the first COVID-19 school restrictions in 2020 (Hill et al, 2021;Mumbardó-Adam et al, 2021;Tokatly-Latzer et al, 2021;Fridell et al, 2022;Thorell et al, 2022). Indeed, it was estimated that primary schoolaged children in England showed 2 months delay in reading and mathematics due to the COVID-19 school restrictions in 2020 when assessed in autumn 2020 (Leahy et al, 2021;Rose et al, 2021).…”