Lockdown experiences and views on future research participation of autistic adults in the UK during the first 6 months of the COVID-19 pandemic
Open accessAbstract
Background: The COVID-19 pandemic resulted in large-scale public health restrictions and lockdowns across many countries. There is an increasing literature on the varied impact of such lockdowns in autistic adults. However, there is very little research on how the pandemic and related public health measures may impact the willingness of autistic people in engaging and taking part in research. The aim of this qualitative study was to explore autistic adults' experiences of the COVID-19 lockdown and how the pandemic may affect future research participation. Methods: We conducted in-depth interviews with 31 autistic adults between March and July 2020. Transcripts were analyzed thematically within a critical realism framework. Results: Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, for example, rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown. This may have exacerbated already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication. Conclusion: The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, health care providers and researchers need to be mindful of rising mental health issues in the aftermath of the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive.
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Employees had to establish new routines, which could be difficult, worsen stress and increase workload.
“Employees then had to establish new routines, which could be difficult [38,55,60], worsen stress [53] and increase workload [39].”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [53]
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Homeworking experiences of neuro-divergent workers: systematic review
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- Authors
- Realpe, A. X., Mills, N., Beasant, L., Douglas, S., Kenny, L., & Rai, D.
- Affiliations
- University Hospitals Bristol NHS Foundation Trust (GB)
- University of Bristol (GB)
- Autism Study Advisor, Bristol, United Kingdom.
- Autistica (GB)
- Avon and Wiltshire Mental Health Partnership NHS Trust (GB)
- Corresponding author
- Realpe, Alba X.
- Venue
- Autism in Adulthood
- Publisher
- SAGE Publications
- Published
- 2023-08-30
- Volume
- 5
- Issue
- 3
- Pages
- 301-310
- ISSN
- 2573-9581 (ISSN-L)
- 2573-959X
- PMC
- PMC10468553
- OpenAlex
- W4317937922
- Cited by
- 13
- References
- 43
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 8 · 2023: 1
- FWCI
- 3.78
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Autism in Adulthood (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Funders
- National Institute for Health and Care Research (NIHR127337, 1215-20011, NIHR200268, BRC-1215-20011, NIHR-INF-2700)
- Department of Health and Social Care (BRC-1215-20011)
- Medical Research Council (MR/K025643/1)
- Topics
- Social Sciences › Psychology › Clinical Psychology › COVID-19 and Mental Health
- Social Sciences › Safety Research › Social impacts of COVID-19
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Keywords
- autistic adults, COVID-19 lockdown, research participation, research engagement, mental health, online research methods, public health restrictions, daily routine disruption, critical realism
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