A Qualitative Study of Autistic Adults' Quality of Life during the COVID-19 Pandemic and Lockdowns

TY - JOUR

T1 - A Qualitative Study of Autistic Adults' Quality of Life during the COVID-19 Pandemic and Lockdowns

AU - Stewart, Gavin R.

AU - Leoni, Marguerite

AU - Charlton, Rebecca A.

AU - Pickard, Hannah R.

AU - Happé, Francesca

N1 - Funding Information: This article represents independent research funded by the Economic and Social Research Council (ESRC) via the London Interdisciplinary Social Science Doctoral Training Partnership [grant number ES/P000703/1]. The funder had had no role in the data collection, analysis, interpretation, or any other aspect pertinent to the study. The authors have not been paid to write this article by any agency. Publisher Copyright: © Copyright 2023, Mary Ann Liebert, Inc., publishers 2023.

PY - 2023/9/1

Y1 - 2023/9/1

N2 - Background: Autistic people experience higher rates of most mental health conditions and report more difficulties with change than nonautistic people. As such, the periods of national stay-At-home orders (known in the United Kingdom as a "lockdown") endured since the beginning of the COVID-19 (coronavirus disease 2019) pandemic in March 2020 may have been particularly challenging for autistic people. Aim: This study explored autistic adults' experience of quality of life and well-being during the start of the COVID-19 pandemic (specifically March to August 2020) using open-Text responses from an online survey. Methods: In total, 79 autistic adults from the United Kingdom (aged 21-75 years) took part. Participants completed an online survey, including open-Text questions on how various factors influencing quality of life, such as social interactions, general health, well-being, and sensory experiences, were impacted by the COVID-19 pandemic and the first set of national lockdowns that occurred between March and August 2020. Results: Thematic analysis created four key themes, each illustrated by several subthemes. These four themes explore (1) health, (2) social changes, (3) support provisions, and (4) adopting new routines. Many participants discussed the impact that the COVID-19 pandemic and the first set of national lockdowns had on their health and expressed concerns regarding the transition out of periods of lockdown, including readjusting to new rules, going back to in-person interactions, and reacclimatizing to high-stimulation sensory environments. However, several participants reported positive experiences of the periods of lockdown, such as reduced commuting, more control over sensory environments, and more time to pursue personal interests and self-care. Conclusions: These findings highlight the importance of giving autistic individuals the support they need to transition back to "normality" as COVID-19 becomes endemic.

AB - Background: Autistic people experience higher rates of most mental health conditions and report more difficulties with change than nonautistic people. As such, the periods of national stay-At-home orders (known in the United Kingdom as a "lockdown") endured since the beginning of the COVID-19 (coronavirus disease 2019) pandemic in March 2020 may have been particularly challenging for autistic people. Aim: This study explored autistic adults' experience of quality of life and well-being during the start of the COVID-19 pandemic (specifically March to August 2020) using open-Text responses from an online survey. Methods: In total, 79 autistic adults from the United Kingdom (aged 21-75 years) took part. Participants completed an online survey, including open-Text questions on how various factors influencing quality of life, such as social interactions, general health, well-being, and sensory experiences, were impacted by the COVID-19 pandemic and the first set of national lockdowns that occurred between March and August 2020. Results: Thematic analysis created four key themes, each illustrated by several subthemes. These four themes explore (1) health, (2) social changes, (3) support provisions, and (4) adopting new routines. Many participants discussed the impact that the COVID-19 pandemic and the first set of national lockdowns had on their health and expressed concerns regarding the transition out of periods of lockdown, including readjusting to new rules, going back to in-person interactions, and reacclimatizing to high-stimulation sensory environments. However, several participants reported positive experiences of the periods of lockdown, such as reduced commuting, more control over sensory environments, and more time to pursue personal interests and self-care. Conclusions: These findings highlight the importance of giving autistic individuals the support they need to transition back to "normality" as COVID-19 becomes endemic.

KW - autism

KW - autistic adults

KW - COVID-19 pandemic

KW - qualitative

KW - quality of life

UR - http://www.scopus.com/inward/record.url?scp=85171565707&partnerID=8YFLogxK

U2 - 10.1089/aut.2022.0035

DO - 10.1089/aut.2022.0035

M3 - Article

AN - SCOPUS:85171565707

SN - 2573-9581

VL - 5

SP - 311

EP - 324

JO - Autism in Adulthood

JF - Autism in Adulthood

IS - 3

ER -