COVID-19 and Perceived Changes to Quality of Life, Anxiety, Depression, and Loneliness in Autistic and Other Neurodivergent U.K. Adults

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Capp, S. J., Mason, D., Colvert, E., Agnew-Blais, J., & Happé, F. (2022). COVID-19 and Perceived Changes to Quality of Life, Anxiety, Depression, and Loneliness in Autistic and Other Neurodivergent U.K. Adults. Autism in Adulthood, 4(3), 233-246. https://doi.org/10.1089/aut.2021.0078

Publication date: 10 Aug 2022 Added to AutiHub: 18 Sep 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)

Abstract

BACKGROUND: In the United Kingdom, we have experienced many changes to our daily lives as a result of COVID-19. Autistic and other neurodivergent (ND, e.g., those with attention-deficit hyperactivity disorder) adults may be more vulnerable to negative effects of the pandemic due to pre-existing mental health disparities and unmet support needs. Furthermore, there is little research, either pandemic related or otherwise, which considers how the experiences of autistic adults with additional intersecting ND identities might differ from those without. METHODS: We collected data from an online survey during June 2020 to September 2020 to explore the psychological impact of the coronavirus pandemic on U.K. adults (N = 286, age 18-72 years). Participants included neurotypical (NT) adults (N = 98), autistic adults (N = 73), other ND adults (N = 53), as well as autistic adults with an additional intersecting ND identity (N = 63). We measured and compared levels of quality of life (QoL), depression, anxiety, and loneliness across groups as well as perceived change in these as a result of the pandemic. RESULTS: Autistic adults, with and without additional ND identities, had consistently low QoL and high anxiety, depression, and loneliness compared with NT adults. We found no differences in these areas between autistic adults with and without additional intersecting ND identities. In some areas, non-autistic ND participants were also doing poorly compared with their NT peers. Many participants felt that their QoL, mental health, and loneliness had worsened due to the pandemic, and this was largely similar across groups. CONCLUSIONS: These results highlight that COVID-19 may have led to increased need and demand for mental health services across the U.K. adult population. Both autistic and ND adults may be in particular need of increased (and improved) mental health and well-being support. This is likely because of pre-existing differences in mental health and well-being as well as individuals facing further difficulties as a result of the pandemic. Why is this an important issue? The coronavirus pandemic has been difficult for many people. Some researchers have found that the pandemic may have been especially difficult for autistic adults and those who are neurodivergent in another way. This might be because autistic and neurodivergent people often experience poor mental health and have a variety of unmet needs. What was the purpose of this study? The purpose of this study was to explore quality of life, depression, anxiety, and loneliness in different groups of adults during the pandemic. We also wanted to explore whether people felt that these had become worse during the pandemic. We were interested to explore differences between autistic adults and other groups of neurodivergent adults. This included autistic adults, autistic adults who were neurodivergent in another way, non-autistic neurodivergent adults, and a comparison group of adults who were not autistic or neurodivergent in any way. What did the researchers do? We recruited participants to take part in an online survey during June 2020 to September 2020. We advertised the study using social media and research websites. A total of 286 adults from the United Kingdom completed our survey. What were the results of the study? Autistic adults had consistently low quality of life and high anxiety, depression, and loneliness compared with the comparison group. This was the same regardless of whether the autistic adults were neurodivergent in another way too. In some areas, non-autistic neurodivergent participants had lower quality of life than the comparison group. Their depression and loneliness scores were somewhere in between autistic participants' and the comparison group's. Many participants felt that their quality of life, mental health, and loneliness had worsened due to the pandemic. This was similar for participants in all the groups. However, there were also participants who felt much better due to coronavirus restrictions. What do these findings add to what was already known? We now know that autistic adults have experienced poor quality of life, mental health, and loneliness during the pandemic. We also found that there were no differences based on whether autistic adults were also neurodivergent in another way (e.g., an autistic adult with attention-deficit hyperactivity disorder). We also know that non-autistic neurodivergent adults have experienced low quality of life during this time. This is important because there has been very little research on other non-autistic neurodivergent adults' experiences during COVID-19 restrictions. What are potential weaknesses in the study? Most of our participants were white British and female. This means that our findings may not be relevant to all adults in the United Kingdom. Our study was carried out during the pandemic, which means that we do not know if these differences between the groups will continue to be true in the future. How will these findings help autistic adults now or in the future? We hope that these findings will help to argue for more support to be made available to promote good quality of life and reduce mental health difficulties for autistic, and other neurodivergent, adults. Lots of our participants felt that their quality of life and mental health had got worse due to the pandemic. Because of this, it is now even more important that governments make changes to policy and funding to provide better services and support for autistic and neurodivergent adults.

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: 2 Oct 2026 08:11.

Cited references
50
With a DOI
46
Without a DOI, from raw bibliography text
4
7 / 50 (14.0%) cited references include at least one author identified as autistic.
References with data to complete
1 / 50 (2.0%)
References with detected author names
50 / 50 (100.0%)
Without detected author names
0
Without a structured title
1
Without a stable identifier
3
References with raw author names still to review
0
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
276
From DOI or external metadata
276
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
92 / 276 (33.3%) names are linked to an author already present in AutiHub. 184 / 276 (66.7%) names are not yet linked.
Names linked to a person identified as autistic
9 / 276 (3.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 9 / 92 (9.8%). Distinct people identified as autistic: 6 / 251 (2.4%).
  1. Samuel R. C. Arnold , Mirko Uljarevic , Ye In (Jane) Hwang , Amanda Richdale , Julian Trollor , Lauren P Lawson (2020). Brief Report: Psychometric Properties of the Patient Health Questionaire-9 (PHQ-9) in Autistic Adults . Journal of Autism and Developmental Disorders, 50(6), 2217-2225. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  2. Heidi Sivertsen , Guro Hanevold Bjørkløf , Knut Engedal , Geir Selbæk , Anne-Sofie Helvik (2015). Depression and Quality of Life in Older Persons: A Review . Dementia and Geriatric Cognitive Disorders, 40(5-6), 311-339. S. Karger AG.
    OpenAlex
  3. Emily A Holmes , Rory C. O’Connor , V Hugh Perry , Irene Tracey , Simon Wessely , Louise Arseneault et al. (2020). Multidisciplinary research priorities for the COVID-19 pandemic: a call for action for mental health science . The Lancet Psychiatry, 7(6), 547-560. Elsevier BV.
    Crossref OpenAlex
  4. Kurt Kroenke , Robert L Spitzer (2002). The PHQ-9: A New Depression Diagnostic and Severity Measure . Psychiatric Annals, 32(9), 509-515. SLACK, Inc..
    Crossref OpenAlex OpenCitations
  5. Tianchen Wu , Xiaoqian Jia , Huifeng Shi , Jieqiong Niu , Xiaohan Yin , Jialei Xie et al. (2021). Prevalence of mental health problems during the COVID-19 pandemic: A systematic review and meta-analysis . Journal of Affective Disorders, 281, 91-98. Elsevier BV.
    Crossref OpenAlex OpenCitations
  6. Jorge Lugo-Marín , María Magán-Maganto , Amado Rivero-Santana , Leticia Cuellar-Pompa , Montserrat Alviani , Cristina Jenaro-Rio et al. (2019). Prevalence of psychiatric disorders in adults with autism spectrum disorder: A systematic review and meta-analysis . Research in Autism Spectrum Disorders, 59, 22-33. Elsevier BV.
    Crossref OpenAlex OpenCitations
  7. Andrew Steptoe , Aparna Shankar , Panayotes Demakakos , Jane Wardle (2013). Social isolation, loneliness, and all-cause mortality in older men and women . Proceedings of the National Academy of Sciences, 110(15), 5797-5801. National Academy of Sciences.
    Crossref OpenAlex OpenCitations
  8. Matthew Hollocks , Jian Wei Lerh , Iliana Magiati , Richard Meiser-Stedman , Traolach Brugha (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis . Psychological Medicine, 49(4), 559-572. Cambridge University Press (CUP).
    Crossref OpenAlex OpenCitations
  9. Meng-Chuan Lai , Caroline Kassee , Richard Besney , Sarah Bonato , Laura Hull , Will Mandy et al. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis . Lancet Psychiatry, 6(10), 819. Elsevier BV.
    Crossref OpenAlex OpenCitations
  10. Laura Manea , Simon Gilbody , Dean McMillan (2012). Optimal cut-off score for diagnosing depression with the Patient Health Questionnaire (PHQ-9): a meta-analysis . Canadian Medical Association Journal, 184(3), E191-E196. CMA Impact Inc..
    Crossref OpenAlex OpenCitations
  11. Carrie T. Allison , Bonnie Auyeung , Simon Baron-Cohen (2012). Toward Brief “Red Flags” for Autism Screening: The Short Autism Spectrum Quotient and the Short Quantitative Checklist in 1,000 Cases and 3,000 Controls . Journal of the American Academy of Child & Adolescent Psychiatry, 51(2), 202-212.e7. Elsevier BV.
    Crossref OpenAlex OpenCitations
  12. Ane Knüppel , Gry Kjaersdam Telléus , Helle Jakobsen , Marlene Briciet Lauritsen (2018). Quality of life in adolescents and adults with autism spectrum disorder: Results from a nationwide Danish survey using self-reports and parental proxy-reports . Research in Developmental Disabilities, 83, 247-259. Elsevier BV.
    Crossref OpenAlex OpenCitations
  13. Jonna M Eriksson , Lisa MJ Andersen , Susanne Bejerot (2013). RAADS-14 Screen: validity of a screening tool for autism spectrum disorder in an adult psychiatric population . Molecular Autism, 4(1), 49. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  14. Gema P. Sáez-Suanes , María Álvarez-Couto (2022). Factors Associated with Quality of Life in Adults with Autism Spectrum Disorder: A Systematic Review . Review Journal of Autism and Developmental Disorders, 9(3), 307-319. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  15. Marios Adamou , Tim Fullen , Nazmeen Galab , Isobel Mackintosh , Karl Abbott , Deborah Lowe et al. (2020). Psychological Effects of the COVID-19 Imposed Lockdown on Adults with Attention Deficit/Hyperactivity Disorder: Cross-Sectional Survey Study . JMIR Formative Research, 4(12), e24430. JMIR Publications Inc..
    Type: Article DOI: 10.2196/24430 OpenAlex: https://openalex.org/W3094349440
    Crossref OpenAlex OpenCitations
  16. Mary Elizabeth Hughes , Linda J. Waite , Louise C. Hawkley , John T. Cacioppo (2004). A Short Scale for Measuring Loneliness in Large Surveys . Research on Aging, 26(6), 655-672. SAGE Publications.
    Crossref OpenAlex OpenCitations
  17. Barbara FC van Heijst , Hilde M. Geurts (2015). Quality of life in autism across the lifespan: A meta-analysis . Autism, 19(2), 158-167. SAGE Publications.
    Crossref OpenAlex OpenCitations
  18. Vanessa Bal , Ellen Wilkinson , L. Casey White , J. Kiely Law , The SPARK Consortium , Pamela Feliciano et al. (2021). Early Pandemic Experiences of Autistic Adults: Predictors of Psychological Distress . Autism Research, 14(6), 1209-1219. Wiley.
    Type: Article DOI: 10.1002/aur.2480 OpenAlex: https://openalex.org/W3127124282
    Crossref OpenAlex OpenCitations
  19. Kurt Kroenke , Robert L. Spitzer , Janet B. W. Williams (2001). The PHQ-9 . Journal of General Internal Medicine, 16(9), 606-613. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  20. Dawn Ee , Ye In (Jane) Hwang , Simone Reppermund , Preeyaporn Srasuebkul , Julian Trollor , Kitty-Rose Foley et al. (2019). Loneliness in Adults on the Autism Spectrum . Autism in Adulthood, 1(3), 182-193. SAGE Publications.
    Crossref OpenAlex OpenCitations
  21. Jinkuk Hong , Lauren Bishop-Fitzpatrick , Leann E. Smith , Jan S. Greenberg , Marsha R. Mailick (2016). Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports . Journal of Autism and Developmental Disorders, 46(4), 1368-1378. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  22. Janessa Manning , Joseph Billian , Jill Matson , Colleen Allen , Neelkamal Soares (2021). Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis . Journal of Autism and Developmental Disorders, 51(8), 2920-2928. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  23. THE WHOQOL GROUP (1998). Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment . Psychological Medicine, 28(3), 551-558. Cambridge University Press (CUP).
    Crossref OpenAlex OpenCitations
  24. Ulf Jönsson , Iman Alaie , Anna Löfgren Wilteus , Eric Zander , Peter B. Marschik , David Coghill et al. (2017). Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research . Journal of Child Psychology and Psychiatry, 58(4), 439-469. Wiley.
    Crossref OpenAlex OpenCitations
  25. Conor Davidson , Keri Lodge , Alwyn Kam (2021). The impact of the COVID-19 pandemic on autistic adults – a survey . Advances in Autism, 7(4), 311-321. Emerald.
    Crossref OpenAlex OpenCitations
  26. Philippa Moss , Will Mandy , Patricia Howlin (2017). Child and Adult Factors Related to Quality of Life in Adults with Autism . Journal of Autism and Developmental Disorders, 47(6), 1830-1837. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  27. Danna Oomen , Annabel D. Nijhof , Jan R. Wiersema (2021). The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries . Molecular Autism, 12(1), 21. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  28. Berk Ustun , Lenard A. Adler , Cynthia Rudin , Stephen V. Faraone , Thomas J. Spencer , Patricia Berglund et al. (2017). The World Health Organization Adult Attention-Deficit/Hyperactivity Disorder Self-Report Screening Scale for DSM-5 . JAMA Psychiatry, 74(5), 520. American Medical Association (AMA).
    Crossref OpenAlex OpenCitations
  29. Veronica Nisticò , Orsola Gambini , Raffaella Faggioli , Benedetta Demartini (2020). The psychological impact of COVID-19 among a sample of Italian individuals with High Functioning Autism Spectrum Disorder . Research Square. Research Square Platform LLC.
    Crossref OpenAlex OpenCitations
  30. Beth Pfeiffer , Eugene Brusilovskiy , Taye Hallock , Mark Salzer , Amber Pomponio Davidson , Laura Slugg et al. (2022). Impact of COVID-19 on Community Participation and Mobility in Young Adults with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 52(4), 1553-1567. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  31. Helen McConachie , David Mason *Autistic author. Learn more… , Jeremy R. Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the validity of a quality of life measure for Autistic people . Journal of Autism and Developmental Disorders, 48(5), 1596. Springer Science and Business Media LLC.
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  32. Yehuda Pollak , Rachel Shoham , Haym Dayan , Ortal Gabrieli-Seri , Itai Berger (2022). Symptoms of ADHD Predict Lower Adaptation to the COVID-19 Outbreak: Financial Decline, Low Adherence to Preventive Measures, Psychological Distress, and Illness-Related Negative Perceptions . Journal of Attention Disorders, 26(5), 735-746. SAGE Publications.
    Crossref OpenAlex OpenCitations
  33. Mizuho Ando , Toshinobu Takeda , Keiko Kumagai (2021). A Qualitative Study of Impacts of the COVID-19 Pandemic on Lives in Adults with Attention Deficit Hyperactive Disorder in Japan . International Journal of Environmental Research and Public Health, 18(4), 2090. MDPI AG.
    Crossref OpenAlex OpenCitations
  34. Ying Rong , Chang-Jiang Yang , Ye Jin , Yue Wang (2021). Prevalence of attention-deficit/hyperactivity disorder in individuals with autism spectrum disorder: A meta-analysis . Research in Autism Spectrum Disorders, 83, 101759. Elsevier BV.
    Crossref OpenAlex OpenCitations
  35. Walker, Nick (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, Autistic empowerment, and postnormal possibilities . Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities.
    Type: Other OpenAlex: https://openalex.org/W7011697317
    Crossref
  36. Berit S. Solberg , Tetyana Zayats , Maj‐Britt Posserud , Anne Halmøy , Anders Engeland , Jan Haavik et al. (2019). Patterns of Psychiatric Comorbidity and Genetic Correlations Provide New Insights Into Differences Between Attention-Deficit/Hyperactivity Disorder and Autism Spectrum Disorder . Biological Psychiatry, 86(8), 587-598. Elsevier BV.
    Crossref OpenAlex OpenCitations
  37. World Health Organization (1996). WHOQOL-BREF: Introduction, Administration, Scoring and Generic Version of the Assessment World Health Organization . WHOQOL-BREF: Introduction, Administration, Scoring and Generic Version of the Assessment World Health Organization.
    Type: Other
    Crossref
  38. Jorge Lugo-Marín , Laura Gisbert-Gustemps , Imanol Setien-Ramos , Gemma Español-Martín , Pol Ibañez-Jimenez , Mireia Forner-Puntonet et al. (2021). COVID-19 pandemic effects in people with Autism Spectrum Disorder and their caregivers: Evaluation of social distancing and lockdown impact on mental health and general status . Research in Autism Spectrum Disorders, 83, 101757. Elsevier BV.
    Crossref OpenAlex OpenCitations
  39. Benjamin E. Yerys , Goldie A. McQuaid , Nancy Raitano Lee , Gregory L. Wallace (2021). Impacts of Co-Occurring ADHD Symptoms on Critical Markers of Outcome for Autistic Adults . Center for Open Science.
    Crossref OpenAlex OpenCitations
  40. StataCorp (2019). Stata Statistical Software: Release 16 . Stata Statistical Software: Release 16.
    Type: Other
    Crossref
  41. Douglas K. Novins , Joel Stoddard , Robert R. Althoff , Alice Charach , Samuele Cortese , Kathryn Regan Cullen et al. (2021). Editors’ Note and Special Communication: Research Priorities in Child and Adolescent Mental Health Emerging From the COVID-19 Pandemic . Journal of the American Academy of Child & Adolescent Psychiatry, 60(5), 544-554.e8. Elsevier BV.
    OpenCitations
  42. Sharpe D (2015). B42 Pract Assess Res Eval, 20, 148.
    Type: Other
    Crossref
  43. Daniel Glenn (2022). Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities . World Futures, 78(5), 339-341. Informa UK Limited.
    OpenAlex