Continuity and change in loneliness and stress during the COVID-19 pandemic: a longitudinal study of autistic and non-autistic adults

Previous studies have suggested that autistic adults may be negatively affected by the COVID-19 pandemic and its associated restrictions. In this study, we examined continuity and change in loneliness and stress, and their predictors, in 448 autistic and 70 non-autistic adults living in the Netherlands. Autistic participants were assessed on three occasions using the de Jong Gierveld Loneliness Scale and Perceived Stress Scale (pre-lockdown (T0), first lockdown (T1), and second lockdown (T2)); non-autistic participants were assessed twice (T1 and T2). Autistic adults' loneliness and stress levels remained stable across all three time points over 8 months, but were consistently higher than those of non-autistic adults. Other predictors of higher loneliness and stress levels at the first lockdown (T1) included low perceived social support and high levels of COVID-19 related worries. Although loneliness and stress were stable at the group level, the wellbeing of some autistic adults worsened over the course of the pandemic, while others improved. For instance, adults with a mental health diagnosis (other than autism) prior to the pandemic were more likely to increase in stress over time, whereas adults with higher perceived social support were more likely to decrease in stress over time (from T1 to T2). Factors contributing to variability in outcome require further examination. Moreover, the relatively high loneliness and stress levels in autistic adults call for attention from clinicians and service providers. Lay summary: In our study, autistic adults reported feeling more lonely and stressed than non-autistic adults during the COVID-19 pandemic. People who missed support from their social network also felt more lonely and stressed. On average, people did not change substantially in their degree of loneliness or stress over time. Yet, we noted large person-to-person differences in the wellbeing of autistic adults during the pandemic.