Abstract
We used mixed methods to learn about the nature and drivers of mental health changes among autistic adults in the United Kingdom during the early stages of the COVID-19 pandemic. In quantitative analyses, we examined the nature and predictors of change in depression, anxiety and stress, prospectively measured in 70 autistic adults at Wave 1 (just before the United Kingdom’s first lockdown) and Wave 2 (10–15 weeks into the United Kingdom’s first lockdown). Retrospective Wave 2 reports of mental health change were also analysed for these 70 participants. For the qualitative analysis, 133 participants (including the 70 from the quantitative analyses) provided reports on their experiences of the pandemic at Wave 2. In quantitative analyses, retrospective reports indicated that participants’ mental health worsened, but prospective data showed a different picture, with overall anxiety and stress scores reducing between Waves 1 and 2. Nevertheless, the mental health impact of the pandemic on autistic adults was variable, with a sizable minority reporting a significant decline in mental health. Qualitative analysis yielded four themes that contributed to mental health changes: (a) adjusting to changes to the social world, (b) living with uncertainty, (c) disruptions to self-regulation, and (d) barriers to fulfilling basic needs.Lay abstractDuring the COVID-19 pandemic, high levels of depression, anxiety and stress have been reported in the general population. However, much less has been reported about the impact of COVID-19 on the mental health of autistic people. What we did: In the present study, we investigated how the mental health of autistic adults in the United Kingdom changed during the early stages of the COVID-19 pandemic. In total, 133 participants completed an online survey at two different time points. Of the 133 participants, 70 completed the survey at the first time point just before the onset of the national lockdown. This allowed us to look at changes in their mental health, from before the lockdown to 10 to 15 weeks during lockdown. All participants (133) told us about their experiences of the pandemic. What we found: While many autistic adults told us that their mental health worsened, people’s experience varied. For some autistic adults, aspects of mental health (e.g. anxiety, stress) actually improved. Participants also described social changes that had occurred, at home and in the outside world. They described feelings of uncertainty during the pandemic, and discussed how the pandemic had affected some of their previous coping strategies. Participants also told us about their difficulties in accessing healthcare services and food during the early stages of the pandemic. In our article, we discuss these findings and focus on what needs to change to ensure that autistic people are better supported as the pandemic continues.
Highlights
A growing body of research has examined the impact of COVID-19 on mental health (e.g., Fancourt et al, 2021; Salari et al, 2020; Vindegaard & Benros, 2020; Xiong et al, 2020)
Risk factors associated with mental health decline included being female, being a young adult, having pre-existing physical or psychiatric conditions, being unemployed or a student, living alone or having a child, having lower household incomes, living in urban areas, and frequent exposure to social media or news relating to COVID-19 (Fancourt et al, 2021; Salari et al, 2020; Vindegaard & Benros, 2020; Xiong et al, 2020)
As a group, autistic people are commonly exposed to several risk factors associated with pandemic-related mental health decline, such as high rates of pre-pandemic mental health problems (Lai et al, 2019, see Bal et al, 2021), high rates of rates of unemployment and poverty (Keen et al, 2016; Taylor et al, 2015) and increased risk of physical disabilities (Kinnear et al, 2020) and chronic diseases (Bishop-Fitzpatrick & Rubenstein., 2019; Kinnear et al, 2020; Cashin et al, 2018)
Summary
A growing body of research has examined the impact of COVID-19 on mental health (e.g., Fancourt et al, 2021; Salari et al, 2020; Vindegaard & Benros, 2020; Xiong et al, 2020). Given the pressures placed on healthcare services during the pandemic, as well as the implementation of social distancing measures, the barriers to autistic peoples’ service access may have been further exacerbated This notion is supported by reports from autistic adults of widespread disruption to their service access during the pandemic (e.g., Pellicano et al, 2021), with some evidence that this impacted on their wellbeing (Bal et al, 2021; Oomen et al, 2021). Given that autistic people report less social participation (Shattuck et al, 2011) and fewer close friendships (Baron-Cohen & Wheelwright, 2003; Liptak et al, 2011) compared to non-autistic people, it is possible that they may be less affected by the social distancing measures implemented to constrain
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