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. 2022 Sep 1;4(3):233-246.
doi: 10.1089/aut.2021.0078. Epub 2022 Aug 31.

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

Simone J Capp  1 , David Mason  1 , Emma Colvert  1 , Jessica Agnew-Blais  1   2 , Francesca Happé  1
Affiliations

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

Simone J Capp et al. Autism Adulthood. .

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.

Keywords: ADHD; autistic adults; coronavirus; mental health; neurodivergence; quality of life.

Plain language summary

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.

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Conflict of interest statement

No competing financial interests exist.

Figures

FIG. 1.
FIG. 1.
Venn diagrams showing the proportions (with N) of participants meeting anxiety, depression, and loneliness cutoffs across groups. Darker shading represents greater proportions of participants from that group occupying that section of the Venn. Aut, autistic; Aut+ND, autistic and neurodivergent in another way; ND, neurodivergent, but not autistic; NT, neurotypical.
FIG. 2.
FIG. 2.
Participant perceived change in QoL, anxiety, depression, and loneliness due to COVID-19 for the whole sample (N = 286). QoL, quality of life.
See this image and copyright information in PMC

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References

    1. Hughes JM. Nothing About Us Without Us: Increasing neurodiversity in disability and social justice advocacy groups. 2016. https://autisticadvocacy.org/wp-content/uploads/2016/06/whitepaper-Incre... (last accessed August 1, 2022).
    1. Kapp SK, ed. Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Singapore: Palgrave Macmillan; 2020.
    1. Holmes EA, O'Connor RC, Perry VH, et al. . Multidisciplinary research priorities for the COVID-19 pandemic: A call for action for mental health science. Lancet Psychiatry. 2020;7(6):547–560. - PMC - PubMed
    1. Mind. The mental health emergency: how has the coronavirus pandemic impacted our mental health? 2020. https://www.mind.org.uk/media-a/5929/the-mental-health-emergency_a4_fina..., (last accessed August 1, 2022).
    1. Wu T, Jia X, Shi H, et al. . Prevalence of mental health problems during the COVID-19 pandemic: A systematic review and meta-analysis. J Affect Disord. 2021;281:91–98. - PMC - PubMed

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