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

Author

Listed:
  • Anna Fridell

    (Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden
    Child and Adolescent Psychiatry, Stockholm Health Care Services, Region Stockholm,118 61 Stockholm, Sweden
    Curtin Autism Research Group, Curtin School of Allied Health, Curtin University, Perth, WA 6102, Australia)

  • Hjalmar Nobel Norrman

    (Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden)

  • Linda Girke

    (Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden
    Department of Psychology, Developmental Psychology, Uppsala University, 751 05 Uppsala, Sweden)

  • Sven Bölte

    (Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden
    Child and Adolescent Psychiatry, Stockholm Health Care Services, Region Stockholm,118 61 Stockholm, Sweden
    Curtin Autism Research Group, Curtin School of Allied Health, Curtin University, Perth, WA 6102, Australia)

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.

Suggested Citation

  • Anna Fridell & Hjalmar Nobel Norrman & Linda Girke & Sven Bölte, 2022. "Effects of the Early Phase of COVID-19 on the Autistic Community in Sweden: A Qualitative Multi-Informant Study Linking to ICF," IJERPH, MDPI, vol. 19(3), pages 1-47, January.
  • Handle: RePEc:gam:jijerp:v:19:y:2022:i:3:p:1268-:d:731718
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    Citations

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    Cited by:

    1. Aneta Lew-Koralewicz, 2022. "Psychosocial Functioning and the Educational Experiences of Students with ASD during the COVID-19 Pandemic in Poland," IJERPH, MDPI, vol. 19(15), pages 1-15, August.
    2. Isabelle Gansella Rocha Da Costa & Beatriz Helena Brugnaro & Camila Resende Gâmbaro Lima & Olaf Kraus de Camargo & Lais Fumincelli & Silvia Letícia Pavão & Nelci Adriana Cicuto Ferreira Rocha, 2023. "Perceived Social Support and Quality of Life of Children with and without Developmental Disabilities and Their Caregivers during the COVID-19 Pandemic in Brazil: A Cross-Sectional Study," IJERPH, MDPI, vol. 20(5), pages 1-14, March.
    3. Lisa B. Thorell & Anna-Karin Klint Carlander & Youstina Demetry & Lisa Marainen & Sarah Nilsson & Charlotte Skoglund, 2024. "Parental Experiences of Distance Learning in Families with and without an Adolescent with ADHD/ASD: A Large Qualitative Survey Study," IJERPH, MDPI, vol. 21(4), pages 1-18, March.

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