Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic

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Realpe, A., Mills, N., Beasant, L., Douglas, S., Kenny, L., & Rai, D. (2023). Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic. Autism in Adulthood, 5(3), 301-310. https://doi.org/10.1089/aut.2022.0027

Publication date: 25 Jan 2023 Added to AutiHub: 12 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Alba Realpe
  2. Nicola Mills
  3. Lucy Beasant
  1. Sarah Douglas *
  2. Lorcan Kenny
  3. Dheeraj Rai

Abstract

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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 18:20.

Cited references
48
With a DOI
42
Without a DOI, from raw bibliography text
6
10 / 48 (20.8%) cited references include at least one author identified as autistic.
References with data to complete
4 / 48 (8.3%)
References with detected author names
44 / 48 (91.7%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
5
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
301
From DOI or external metadata
301
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
9
123 / 301 (40.9%) names are linked to an author already present in AutiHub. 178 / 301 (59.1%) names are not yet linked.
Names linked to a person identified as autistic
28 / 301 (9.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 28 / 123 (22.8%). Distinct people identified as autistic: 21 / 275 (7.6%).
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