The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: a longitudinal mixed-methods study

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 abstract During 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.