The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries

Abstract

Background Previous studies have reported a negative psychological and mental health impact of the COVID-19 pandemic. This impact is likely to be stronger for people with autism as they are at heightened risk of mental health problems and because the pandemic directly affects social functioning and everyday routines. We therefore examined COVID-19 pandemic-related changes in mental health, the impact of the pandemic on their social life and routines, satisfaction with pandemic-related information and tips, and participants’ wishes for guidance. Methods We used a mixed-method approach, collecting quantitative and qualitative survey data from adults with and without autism across three European countries: Belgium, the Netherlands, and the UK (N = 1044). Results We found an increase in depression and anxiety symptoms in response to the pandemic for both the non-autism and the autism group, which was greater for adults with autism. Furthermore, adults with autism showed a greater increase in worries about their pets, work, getting medication and food, and their own safety/security. They felt more relieved from social stress, yet experienced the loss of social contact as difficult. Adults with autism also felt more stressed about the loss of routines. Pleasant changes noted by adults with autism were the increase in solidarity and reduced sensory and social overload. Adults with autism frequently reported problems with cancellation of guidance due to the pandemic and expressed their wish for (more) autism-specific information and advice. Limitations Our sample is likely to reflect some degree of selection bias, and longitudinal studies are needed to determine long-term effects. Conclusions Results highlight the psychological burden of the pandemic on adults with autism and shed light on how to support them during this COVID-19 pandemic, which is especially important now that the pandemic is likely to have a prolonged course. There is a need for accessible, affordable (continued) support from health services. Guidance may focus on the maintenance of a social network, and adjusting routines to the rapid ongoing changes. Finally, we may learn from the COVID-19 pandemic-related changes experienced as pleasant by adults with autism to build a more autism-friendly society post-pandemic.

The Impact of COVID-19 on Sleep in Autistic Adults: Longitudinal Comparisons pre and During Lockdown

“…Moreover, some studies have reported positive effects of the COVID-19 pandemic on the mental health of autistic adults ( 8 , 15 , 27 , 28 ). Positive outcomes and coping strategies reported by autistic adults include being able to use extra time to pursue hobbies, establishing new routines, spending more time with family, keeping busy engaging in chores, adapting to virtual social connexion, spending time in nature and learning at a comfortable pace ( 15 , 27 ). Spending time outdoors “in nature” has more generally been promoted as an effective adaptive strategy during the pandemic ( 29 ).…”

“…By Time 3, 36.14% of participants reported the impact of COVID-19 worsening pre-existing mental health conditions; 53.68% reported feeling more anxious; and 48.6% reported feeling more depressed than before the pandemic. For example, Oomen et al, ( 8 ) found an increase in depression and anxiety symptoms in response to the pandemic for autistic adults, participants also showed a greater interest in worries about pets, work, access to medication and food compared to non-autistic peers. Therefore, although there may have been some positive impact on sleep in autistic adults, the overall impact of the pandemic on mental health and sleep, and complex interactions between these two factors, requires further investigation.…”

“…In addition, a common characteristic of autism is a preference for consistency and adherence to routine, these are two factors have been impacted greatly by the pandemic. This is supported by evidence that adjustment to changes in routine, worries about family and friends, accessing medication, food and personal safety, and general uncertainty about the future have impacted mental health and well-being negatively in autistic adults (8,14,15). Moreover, autistic adults may be affected to varying degrees by the pandemic.…”

“…Autistic adults may also be particularly vulnerable to the impact of the COVID-19 pandemic. Recent findings demonstrate mental health has deteriorated as a result of the pandemic, evident through increased anxiety and depression and greater stress levels (8,9). Also, it has been suggested that susceptibility to viral infections may be more prevalent in autistic adults due to health vulnerabilities such as co-occurring complex physical and mental conditions and melatonin deficiencies (10)(11)(12)(13).…”

Experience of Autistic Children and Their Families During the Pandemic: From Distress to Coping Strategies

“…Isolation and loneliness were the main barrier identified by typical teenagers in a study by Tardif-Grenier et al (2021) with a sample from the same area as the one in our study. Oomen et al (2021) reported more drastic changes for non-autistic persons than for autistic persons regarding their "social life" (p. 13). Furthermore, it is not surprising that the caregivers and families of autistic children in our study felt isolated during the pandemic, as this was reported by others as well (more than 70% of the sample in Salt et al, (2020).…”