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The Psychological Impact of the COVID-19 Pandemic on on Adults with Autism

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The Psychological Impact of the COVID-19 Pandemic on on Adults with Autism Oomen et al. Molecular Autism (2021) 12:21 https://doi.org/10.1186/s13229-021-00424-y RESEARCH Open Access The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries Danna Oomen1,2* , Annabel D. Nijhof1,2 and Jan R. Wiersema1,2 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 afects social functioning and everyday routines. We therefore exam- ined 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 difcult. 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 guid- ance due to the pandemic and expressed their wish for (more) autism-specifc information and advice. Limitations: Our sample is likely to refect some degree of selection bias, and longitudinal studies are needed to determine long-term efects. 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, afordable (continued) support from health services. Guid- ance 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. Keywords: COVID-19, Pandemic, Autism, Mental health Introduction On March 11, 2020, the World Health Organization (WHO) ofcially declared the COVID-19 virus a global pandemic [1]. Te global spread of the virus led to a mas- *Correspondence: [email protected] 1 Department of Experimental Clinical and Health Psychology, Ghent sive and immediate public health campaign to reduce University, Henri Dunantlaan 2, 9000 Ghent, Belgium further spread. Tis campaign encouraged large-scale Full list of author information is available at the end of the article © The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creat iveco mmons .org/licen ses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creat iveco mmons .org/publi cdoma in/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Oomen et al. Molecular Autism (2021) 12:21 Page 2 of 21 behavior change, including social isolation and distanc- small (routine) changes and difculties with transitions. ing, which has a massive impact on how we live and Tese two core symptom domains of autism are directly socialize on a daily basis. Added to these many daily life afected by the pandemic, as it both impacts our social changes (e.g., studying/working from home, loss of activi- interactions and results in big, continuing changes to our ties, and real-life social contact) that we had to adapt to everyday lives. Tis gives reason to believe that individu- rapidly, this unprecedented pandemic comes with great als with autism may experience the pandemic in a unique uncertainty and heightened levels of threat (e.g., worry way. Given the fact that adults with autism are reported about loved ones or yourself contracting the virus; [2]). to have more difculty coping with stressful events than Both the pandemic itself and the encouraged behav- neurotypicals do [20, 21], and especially because lev- ior change can have an impact on our mental health as els of anxiety and depression are known to be generally uncertainty is a cognitive and psychological stressor high in the autism population [18, 19], there is a need for [3], while social isolation has consistently been associ- research to ascertain the impact of the pandemic on the ated with negative mental health outcomes and con- mental health of individuals with autism. versely, social support is considered an important bufer Tis need for research on COVID-19 and autism is in adverse times (e.g., [4]). Hence, concerns have been also evident from the emerging articles that empha- raised regarding the impact of the pandemic and the size the concerns for individuals with autism during associated containment measures on the mental health of the COVID-19 pandemic [22–29]. Asbury et al. [23] individuals across society (e.g., [5]). Studies on previous asked parents of school-aged children with special edu- epidemics as well as the current COVID-19 pandemic cational needs and disabilities to describe the impact of indeed highlight their negative mental health impact (e.g., the COVID-19 pandemic on the mental health of their Equine infuenza: [6]; SARS: [7, 8]; H1N1: [9]; COVID-19: child. Te majority of the sample consisted of parents [10–16]). of a child with autism (82%). Children were reported to Importantly, although the COVID-19 pandemic has experience anxiety/worry and low mood. In the study of an infuence on society as a whole, negative mental Amorim et al. [26], caregivers of children with autism health efects due to the pandemic might not be evenly also reported more anxiety during quarantine, both for distributed. Individuals with autism spectrum disorder themselves and their child, compared to children without 1 (ASD; henceforth ‘autism’ ) may be considered one of the autism and their caregivers. Furthermore, the majority vulnerable groups [5] that are likely to be afected to a of caregivers in the autism group reported that quar- greater extent. Autism is a prevalent neurodevelopmental antine negatively impacted emotion management in disorder with a global worldwide prevalence estimated their children, whereas the majority of parents without as 0.62% or higher [17]. Te impact of the pandemic may autism reported no impact or even a positive impact of be stronger for individuals with autism for two main rea- quarantine on emotion management in their children. sons: Firstly, autism is associated with a heightened risk Studies on behavioral problems during the COVID-19 of mental health problems, including a higher likelihood pandemic have found an increase in behavioral problems of comorbid mental health disorders such as mood and in children with autism since the pandemic [28], and that anxiety disorders [18, 19]. Secondly, autism is character- preexisting behavioral problems predict a higher risk ized by two core symptom domains which are directly of more intense and frequent behavioral problems dur- impacted by the pandemic. On the one hand, individu- ing the pandemic [29]. Te commentary of Ameis et al. als with autism experience social interaction and com- [22] highlights the potential negative impact of changes munication difculties, such as difculties initiating or to everyday routines and restrictions to regular services responding to social interactions, adjusting their behavior on children with autism. White et al. [24] surveyed car- to suit various social contexts, and developing and main- egivers of children with autism and indeed found ser- taining relationships. On the other hand, individuals with vices and therapies for individuals with autism to be autism show repetitive and restricted behavior, interests, disrupted. Tus far, there is only one survey that most and activities. Te latter domain includes insistence on likely reports data from adults (among younger respond- sameness and infexible adherence to routines, which ers): the National Autistic Society, a charity, published a sometimes results in extreme distress in response to report [27] which revealed that 9 out of 10 people with autism worried about their mental health during lock- down. However, they did not include a control group or 1 We use an abbreviated version of the diagnostic term: person with or with- sample characteristics, preventing any conclusions about out (a diagnosis) of autism (spectrum disorder). With this, we do not intend how these mental health worries compare to the general to take a stance in the ongoing person-frst versus identity-frst debate. We population, or about how many of the respondents were acknowledge and respect diferent preferences for language used to refer to a person with a diagnosis of ASD.
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