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The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries
Open accessPublished version of a preprint
Abstract
BACKGROUND: Previous studies have reported a negative psychological and mental health impact of the COVID-19 pandemic. This impact is likely to be stronger for people with autism as they are at heightened risk of mental health problems and because the pandemic directly affects social functioning and everyday routines. We therefore examined COVID-19 pandemic-related changes in mental health, the impact of the pandemic on their social life and routines, satisfaction with pandemic-related information and tips, and participants' wishes for guidance. METHODS: We used a mixed-method approach, collecting quantitative and qualitative survey data from adults with and without autism across three European countries: Belgium, the Netherlands, and the UK (N = 1044). RESULTS: We found an increase in depression and anxiety symptoms in response to the pandemic for both the non-autism and the autism group, which was greater for adults with autism. Furthermore, adults with autism showed a greater increase in worries about their pets, work, getting medication and food, and their own safety/security. They felt more relieved from social stress, yet experienced the loss of social contact as difficult. Adults with autism also felt more stressed about the loss of routines. Pleasant changes noted by adults with autism were the increase in solidarity and reduced sensory and social overload. Adults with autism frequently reported problems with cancellation of guidance due to the pandemic and expressed their wish for (more) autism-specific information and advice. LIMITATIONS: Our sample is likely to reflect some degree of selection bias, and longitudinal studies are needed to determine long-term effects. CONCLUSIONS: Results highlight the psychological burden of the pandemic on adults with autism and shed light on how to support them during this COVID-19 pandemic, which is especially important now that the pandemic is likely to have a prolonged course. There is a need for accessible, affordable (continued) support from health services. Guidance may focus on the maintenance of a social network, and adjusting routines to the rapid ongoing changes. Finally, we may learn from the COVID-19 pandemic-related changes experienced as pleasant by adults with autism to build a more autism-friendly society post-pandemic.
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“many participants (in primarily qualitative studies) described struggling with work-life balance when WFH, particularly when work needed to be balanced with childcare and home-schooling [50].”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [50]
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“Additionally, participants with ASD in one study [50] described worrying about returning to in-person work because they feared they would be exhausted from sensory overload on their commute due to being out of the habit.”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [50]
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“This meant they could choose to work during the hours they were most effective [57,59], taking breaks when needed [39,50], allowing them to feel they had greater autonomy [42,60].”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [50]
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“Research suggests the pandemic and lockdowns negatively affected the mental health of neuro-divergent people [21], who often experienced greater psychological burden than neuro-typical individuals due to the loss of routines [50]”
From Homeworking experiences of neuro-divergent workers: systematic review (2024) · cites this paper as [50]
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Metadata
- Authors
- Oomen, D., Nijhof, A. D., & Wiersema, J. R.
- Affiliations
- Ghent University (BE)
- Corresponding author
- Oomen, Danna
- Venue
- Molecular Autism
- Published
- 2021-03-03
- Volume
- 12
- Issue
- 1
- Pages
- 21-21
- ISSN
- 2040-2392 (ISSN-L)
- PMC
- PMC7927758
- OpenAlex
- W3119734246
- Cited by
- 136
- References
- 51
- Citations by year
- 2026: 3 · 2025: 6 · 2024: 16 · 2023: 41 · 2022: 55 · 2021: 15
- FWCI
- 21.64
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Molecular Autism (publishedVersion, cc-by)
- Research Square (acceptedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Ghent University Academic Bibliography (Ghent University) (submittedVersion, cc-by)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Bijzonder Onderzoeksfonds (BOF18/DOC/348)
- Fonds Wetenschappelijk Onderzoek (FWO19/PDJ/025)
- Topics
- Social Sciences › Psychology › Clinical Psychology › COVID-19 and Mental Health
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Sociology and Political Science › Social impacts of COVID-19
- Keywords
- COVID-19 pandemic, autism spectrum disorder, mental health, depression, anxiety, routine disruption, autistic adults
- MeSH terms
- Social Interaction, COVID-19, SARS-CoV-2, Adolescent, Adult, Aged, Anxiety, Autistic Disorder, Belgium, Depression, Female, United Kingdom, Humans, Male, Middle Aged, Netherlands, Surveys and Questionnaires, Stress, Psychological, Young Adult
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