A qualitative study of autistic adults’ quality of life during the COVID-19 pandemic and lockdowns
Open accessAbstract
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.
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Many participants cited not needing to commute to work as a benefit of WFH.
“Many participants cited not needing to commute to work as a benefit of WFH [38,41,54]”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [54]
When in the workplace (rather than at home) participants often struggled with distracting background noises, overly bright lights, odours and unwanted physical contact, all of which caused substantial sensory distress and could reduce focus, productivity and cause fatigue, particularly for those with ASD.
“when in the workplace (rather than at home) participants often struggled with distracting background noises, overly bright lights, odours and unwanted physical contact, all of which caused substantial sensory distress [54,58,60] and could reduce focus, productivity [39] and cause fatigue [60], particularly for those with ASD.”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [54]
Some felt that no longer having to get up early to commute to work had negatively affected their sleep cycle.
“or felt that no longer having to get up early to commute to work had negatively affected their sleep cycle [54].”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [54]
By contrast, at home participants could create comfortable, quiet, less overwhelming environments suited to their needs with autonomy over temperature, lighting and noise.
“By contrast, at home participants could create comfortable, quiet, less overwhelming environments suited to their needs [39,47,54,55,57-59,61] with autonomy over temperature, lighting and noise [39,42,52,55,57].”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [54]
Online meetings were perceived by some as less anxiety-inducing than in-person meetings and beneficial from a sensory perspective.
“Online meetings were perceived by some as less anxiety-inducing than in-person meetings [54] and beneficial from a sensory perspective [57,60].”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [54]
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- Authors
- Stewart, G. R., Leoni, M., Charlton, R. A., Pickard, H. R., & Happé, F.
- Affiliations
- King's College London (GB)
- Goldsmiths University of London (GB)
- Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.
- Corresponding author
- Stewart, Gavin R.
- Venue
- Autism in Adulthood
- Publisher
- SAGE Publications
- Published
- 2023-08-30
- Volume
- 5
- Issue
- 3
- Pages
- 311-324
- ISSN
- 2573-9581 (ISSN-L)
- 2573-959X
- PMC
- PMC10468551
- OpenAlex
- W4322768033
- Cited by
- 8
- References
- 42
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 3
- FWCI
- 2.33
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Autism in Adulthood (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- BIROn (Birkbeck, University of London) (acceptedVersion)
- Goldsmiths (University of London) (acceptedVersion)
- UCL Discovery (University College London) (submittedVersion)
- Research Portal (King's College London) (submittedVersion, other-oa)
- Funders
- Economic and Social Research Council (ES/P000703/1)
- Topics
- Social Sciences › Psychology › Clinical Psychology › COVID-19 and Mental Health
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Safety Research › Social impacts of COVID-19
- Keywords
- autism spectrum disorder, autistic adults, quality of life, COVID-19 pandemic, lockdown, well-being, mental health, sensory experience, social interaction, support services, routines, self-care
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