The impact of the COVID-19 pandemic on autistic adults
Research group EXPLORA (Ghent University) has set up an online survey to investigate the effects of the current COVID-19 pandemic on the mental health and daily lives of adults on the autism spectrum. The tremendous impact of the pandemic has affected society as a whole, but this study aims to better understand how the current pandemic affects autistic adults specifically, so that tailored support and advice can be given to this group. Here we present the most societally relevant preliminary results of our ongoing study, in the hope that this will benefit the autistic community and their broader support network at this time.
The preliminary results are based on a sample of 839 participants (mean age = 38, range: 18-81; 573 female), of which 473 reported that they have a formal clinical diagnosis of autism spectrum disorder (ASD)[1]. To respect the wishes of autistic individuals, we use the term ‘autistic’, a term endorsed by many individuals with ASD (Kenny et al., 2016). All participants were residents of either Belgium (N = 467), the Netherlands (N = 220), or the United Kingdom (N = 152). For the current report, we combined data from these three countries, but note that results were similar when analysing data for residents of the three countries separately.
Mental health impact of the Covid-19 pandemic
Across the two groups (autistic and non-autistic or ‘neurotypical’), approximately three-quarters reported an increase in depression and anxiety symptoms in response to the pandemic. Furthermore, autistic adults reported a greater increase in both anxiety and depression symptoms than neurotypical adults. Considering that autistic individuals ordinarily have higher rates of anxiety and depression than neurotypicals, this increase is particularly worrisome.
The survey also assessed whether people worry more or less than usual (i.e. than before the pandemic) about certain topics. Autistic adults were found to worry more during the pandemic than neurotypicals about their pets (if they had any), access to medication, getting food, and correctly following the recommendations to prevent spread of COVID-19. Some of these topics were also frequently mentioned in an open-ended question inquiring which pandemic-related changes had caused the most stress/anxiety. Answers to this question made it clear that the stress/anxiety experienced from wanting to correctly follow the recommendations is exacerbated due to the rules not being clear to (autistic) people. By far the most often reported anxiety-provoking topics for autistic adults were related to groceries. The mentioned reasons for this were twofold. Firstly, shopping routines are disrupted. This is due to the unavailability of specific products, the introduction of limits on time spent in the shop and the number of products one may buy, and having to line up to enter the shop. Secondly, shopping is more stressful due to the social distancing rules. On the one hand, they find it difficult to always adhere to the rules themselves, on the other hand, being in an environment where other people do not always adhere to the rules induces anxiety and frustration. This all makes shopping a stressful activity for many autistic adults. Hence, advertising specific shopping times as autism-friendly, or a buddy system pairing autistic individuals with a buddy who can shop for them, could be introduced to alleviate some of these issues. Other recurring topics for both autistic and neurotypical adults were worries about employment and finances, as well as worrying about one’s own health and that of close others.
Covid-19 pandemic related changes in routines and social interaction
On average, autistic adults feel more stressed about the changes to their daily routines that the pandemic is causing (e.g. work changes, loss of outside activities) than neurotypicals. On the other hand, they also experience some consequences as positive and in a stronger degree than neurotypicals, such as the freedom to deviate from society’s expectations when adjusting their routines (e.g. spending more time on their hobbies and less on obligatory social contact). When asked which pandemic-related changes they have found most difficult, autistic adults frequently mentioned the loss of routine. They also expressed concerns that this difficulty would appear again as we slowly transition back to ‘normal’ life.
“The relief of not having to mask anymore, but simultaneously the worry I will not be
able to join back the rat race as quickly as the others. When things will open back up,
expectations of enjoying the social get together will be super high and I will be
enormously stressed and out of practice in acting normal”
Regarding the effect of the pandemic on people’s social life, autistic adults feel more relief from certain social stressors such as obligatory parties and appointments, spontaneous visits from others, or strangers getting too close. However, we also found that many autistic adults struggle with new social interaction difficulties directly related to the pandemic, such as not being able to read faces because of face masks, and having difficulty with the back-and-forth flow of social interaction during video calls. Qualitative data also brought to light that autistic individuals have no less need for social contact than neurotypicals. On the contrary: the difficulty most often reported by both groups was the loss of social contact. With autistic individuals already more likely than neurotypicals to face loneliness and social isolation, losing the access to their support network (which is usually smaller than that of neurotypicals) appears to be a burden in this already stressful time.
“The stress of not being able to see loved ones outside the house and feeling crippled
by social isolation, with no idea when it'll end. I feel a neurotypical person in this
situation will have a vast number of people to interact with in varying ways. I have 2
who I'm in touch with outside my home and only 1 is via Skype. As an autistic I have a
limited social circle and now it's even smaller, I worry about autistics who live alone
consistently too.”
Other changes that both groups found most difficult were not being able to spend time alone due to living with others, remote working, homeschooling children, and the uncertainty of how long the pandemic and the associated changes will last.
Support during the COVID-19 pandemic
Our results indicate that autistic adults find it important that people on the spectrum are consulted in the development of COVID-19 specific tips and tools offered to the autistic community. Furthermore, they are not completely satisfied with the autism-specific tips and tools currently available. This is further supported by qualitative data from open-ended questions, as many wished for (more) autism-tailored information and advice, and many were not aware of existing resources. For the existing resources it was noted that these were mostly directed to parents of autistic children and not to autistic adults.
Other needs expressed by autistic adults were related to access to appropriate and affordable (mental-health) services (e.g. medical, psychological, household support). Many autistic individuals that did not need regular support before, report to need it now, but are not aware of how to access relevant services. Furthermore, an overstretched healthcare system paired with social distancing rules means that many autistic individuals have lost some, if not all, of the support they received before the pandemic. They indicate the need for continued support, even if this is online, but face-to-face support is preferred as soon as this is once again possible. When offering online support, it should be taken into account that some autistic people experience anxiety on voice or video calls, and would rather communicate via chat (i.e. text-based messaging).
Data from an open-ended question asking about positive COVID-19 related changes revealed that many autistic adults receive crucial support from within the autistic community as they share their experiences with one another. Furthermore, many autistic people feel that the pandemic brought a sense of ASD awareness and a feeling of solidarity.
“As the entire nation is on lockdown, and everyone is self-isolating, I feel like I am
finally at one with society. My way of living life is the norm. I no longer have to feel
alone. I have a sense of belonging that everyone is in the same situation and we're all
in this together.”
Conclusion
These preliminary results highlight the burden of the pandemic on the mental health and daily life of most autistic adults that filled out our survey. Furthermore, the results gave us insight into how autistic adults can be supported. There is a need for COVID-19-related tips and tools tailored to autistic adults, while sources should be more widely promoted, as many are not aware of them yet. Likewise, there is a need for accessible (continued) support from health services to manage their mental health and to guide them in adjusting their routines to the rapid ongoing changes. We would also like to encourage people to reach out to autistic individuals in their community to find out whether they are in need of support or social contact.
Contact
This study was conducted by Ghent University, Belgium, research group EXPLORA (website; Facebook; Twitter).
Danna Oomen (danna.oomen@ugent.be)
Dr. Annabel Nijhof (annabel.nijhof@ugent.be)
Prof. dr. Roeljan Wiersema (roeljan.wiersema@ugent.be)
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We would like to provide you with the following links to existing resources for support and information that may help you at this time.
English:
UK-based autism organisations:
https://www.autism.org.uk/
Website created by and for autistic individuals:
http://www.thinkingautismguide.com
Covid-19-specific information:
https://www.mhe-sme.org/covid-19/ (not specific to autism)
http://www.thinkingautismguide.com/2020/04/tpgas-resources-for-coping-with-covid.html (specific to autism)
Nederlandstalig:
Autisme-organisaties België:
https://autismevlaanderen.be/ (zie ook hun ‘Autismetelefoon’, +32 78 152 252)
https://www.ligaautismevlaanderen.be/ (zie ook hun ‘Autisme Chat’)
https://www.participate-autisme.be/nl
Autisme-organisaties Nederland:
https://www.autismecentraal.com/
Website voor personen met ASS:
https://petervermeulen.be/
Websites voor en door personen met ASS:
https://tistje.com/category/covid-19/ (Covid-19-specifiek)
[1] This includes ASD (DSM-5) as well as diagnoses based on earlier DSM versions, such as Autistic Disorder, Asperger's disorder, and Pervasive Developmental Disorder - Not Otherwise Specified.