3.1 Demographics
Demographic information on participants per group can be found in Table 1. The majority of adults with autism in our sample were female (68%), which is in disproportion with diagnostic rates (37), but common in large online studies (e.g. (32–34)). The larger part of the participants were residents of Belgium. Years of education between groups was similar, but relatively more adults without autism in our sample were employed (61% versus 45%; including self-employment: 70% versus 50%), in line with general findings of reduced employment in adults with autism (41,42). AQ-short scores within the autism group were comparable to previous samples (30,39), as were the scores of the non-autism group (30). Over half of the adults with autism in our sample had one or more comorbid psychiatric diagnoses (57%), whereas 18% of the adults without autism reported to be diagnosed with a mental health problem. We collected more information on pandemic-specific characteristics of our sample, as can be found in Appendix B Table 1. Not only did we inquire about participants’ COVID-19 pandemic-related behaviour, we also asked extra questions regarding their specific living situation during the start of the pandemic.
3.2 Quantitative Analyses
3.2.1 Impact of the Pandemic on Depression and Anxiety Symptoms
Mean scores and standard deviations for the adapted PHQ-9 and GAD-7 can be found in Table 2. Across the two groups, three-quarters reported an increase in depression and anxiety symptoms in response to the pandemic (depression: 74%, anxiety: 75%, mean total score > 3). Our LMMs[1] revealed that this increase in depression and anxiety symptoms was significantly greater in the autism group (total adapted PHQ-9 score: β = -0.40, χ² (1) = 11.86, p = .001, q = .001; total adapted GAD-7 score: β = -0.32, χ² (1) = 4.81, p = .028, q = .048). Importantly, the impact of the symptoms on everyday life was also greater in the autism group than the non-autism group (item 10 of the adapted PHQ-9: β = -0.66, χ² = (1) = 76.20, p < .001, q < .001; item 8 of the adapted GAD-7: β = -0.66, χ² (1) = 59.27, p < .001, q < .001).
3.2.2 Pandemic-related Changes in Worries
Means, standard deviations, and LMM statistics of each of the worry topics can be found in Table 3. On average, both groups indicated to worry more than usual about most topics of worry (mean scores > 3). Moreover, this increase in worries was significantly greater in the autism group for the following worry topics: Their pets, work (even when they felt their job was safe), losing their job, getting medication and food, and their own safety/security. The autism group did not worry more than the non-autism group about any of the COVID-19 pandemic specific worries.
3.2.3 Impact of the Pandemic on Social Contact and Routines
Means and standard deviations of the COVID-19 pandemic-related changes on routines and social contact can be found in Table 4. Our LMMs revealed that the non-autism group more than the autism group felt the pandemic changed their social life, β = 0.53, χ² (1) = 49.63, p < .001, q < .001. While the non-autism group hereby felt more socially isolated, β = 0.20, χ² (1) = 4.70, p = .030, q = .048, the autism group felt more relieved from social stress, β = -0.56, χ² (1) = 22.46, p < .001, q < .001.
The non-autism group more than the autism group felt they had to change their daily routines due to the pandemic, β = 0.32, χ² (1) = 16.18, p < .001, q < .001. Nonetheless the autism group felt more stressed about the changes in daily routines than the non-autism group, β = -0.58, χ² (1) = 13.91, p < .001, q = .001. The groups did not differ in the extent they enjoyed the freedom to deviate from society’s expectations when adjusting their routines to the new situation, β = -0.20, χ² (1) = 2.75, p = .097, q = .129.
3.2.4 Impact of the Pandemic on Guidance and Satisfaction with Offered Tips and Tools
Of the participants from both groups who received guidance pre-pandemic from a qualified medical specialist (e.g. psychiatrist, psychologist, counsellor, thus entailing a broad range of services, practitioners and therapies), 46% indicated sessions being cancelled due to the COVID-19 pandemic (See Table 5). Across groups, for the majority of participants who had a wish for guidance, the wish was unrelated to the pandemic (58%). However, in the autism group, it was indicated more often that the wish for guidance was ‘both unrelated and related’ to the pandemic (42% versus 16%).
Figure 1 (A) shows that the majority of adults with autism in our sample find it important that adults with autism are being consulted for the development of COVID-19 pandemic tips and tools. Furthermore, more adults with autism indicated to be unsatisfied (answering options 1 or 2: n = 219) than satisfied (answering options 4 or 5: n = 86) with the available tips and tools for individuals with autism during the COVID-19 pandemic (B). Moreover, less adults without autism indicated to be unsatisfied (answering options 1 or 2: n = 73) than satisfied (answering option 4 or 5: n = 176).
3.3 Qualitative Analyses
3.3.1 Measures That May Help Manage Mental Health During the Pandemic
Themes identified from responses of adults with autism to the open question inquiring about their needs during the pandemic can be found in Table 6. Adults with autism indicated a need for (continued) professional support (e.g. medical, psychological, household support) that is both affordable and accessible. Many adults with autism that did not need regular support before, reported to need it during the pandemic but did not know how to access relevant services. Furthermore, many adults with autism lost some, if not all, of the support they received before the pandemic. The type of support that was lost varied widely, ranging from medical and psychological support to household support. Adults with autism that did report to receive support often indicated to prefer face-to-face support as soon as this was once again possible. Regarding online support, some adults with autism noted to experience anxiety on voice or video calls due to difficulties with the back-and-forth flow of social communication during calls, and would rather communicate via chat (i.e. text-based messaging). Nevertheless, there were some adults with autism that commended the accessibility of remote support. The open question further revealed that the need for help was often related to structuring their days (i.e. creating new routines that fit into pandemic life).
Both adults with and without autism expressed the need for clearer information and rules. However, whereas adults without autism mainly described the lack of clarity as an annoyance, adults with autism made explicit statements of distress. This lack of clarity and the accompanying distress led adults with autism to avoid activities that were still allowed, as they were afraid to break protocols (e.g., not going for walks or with members of their household at all, as it was not specified how far from their house they were allowed to go). Adults with autism further wished for (more) autism-specific information and advice that was specifically tailored to adults with autism, as many noted that existing information was mostly directed to parents of children with autism. The answers also indicated that the sources at that time were not yet promoted widely enough, as some were not aware of them.
3.3.2 COVID-19 pandemic-related Changes That Are the Most Difficult
The two themes identified from responses of adults with autism to the open question inquiring about COVID-19 pandemic-related difficulties can be found in Table 7. One theme related to a loss of routine. Many adults with autism indicated to have a clear daily or weekly routine they stuck to pre-pandemic, which they lost because of the pandemic affecting them negatively. They emphasized the importance of structure in their daily life to maintain their mental health, and the experienced difficulty with having to create a new routine by themselves. Some adults with autism also noted they missed social contact in their daily/weekly routines, overlapping with the second theme, namely, a loss of social contact. Both adults with and without autism mentioned an negative impact of the pandemic on their social life. However, whereas adults without autism mainly expressed the burden of missing their pre-pandemic social life (seeing others face-to-face), adults with autism rather described the burden of losing their social support network, which for some people led to full social isolation in an already stressful time. Some adults with autism also expressed the need for social contact to keep up their social skills. Furthermore, answers to this open question revealed that adults with autism experienced 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.
Other changes that both groups found difficult were not being able to spend time alone due to living with others, balancing work-life while working from home, balancing work with taking care of children (including home-schooling), and the uncertainty of how long the pandemic and the associated changes will last.
3.3.3 COVID-19 pandemic-related Changes That Cause the Most Stress/anxiety
Themes identified from responses of adults with autism to the open question inquiring about COVID-19 pandemic-related stress/anxiety can be found in Table 8. By far the most often reported anxiety-provoking theme for adults with autism was related to shopping (grocery, but sometimes also for medication). The mentioned reasons for this were twofold. First, shopping routines were disrupted. This is due to, among other things, the unavailability of specific food and non-food products, the introduction of limits on time spent in the shop and on the number of products one may buy, and having to line up to enter the shop. Second, shopping was described as more stressful due to the social distancing rules. On the one hand, some adults with autism found it difficult to 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.
Another recurrent anxiety-provoking theme was related to the prospect of having to go back to ‘normal’ after the pandemic. Adults with autism indicated to feel anxious about the prospect of having to change their routine yet again, possibly repeatedly, to adjust to the gradual lifting of lockdown and other pandemic-related measures. Furthermore, they feel anxious about the prospect of a sudden return of external stimuli (e.g. traffic, noise, more people being outside) paired with a loss of coping skills to deal with them. That is, many adults with autism protected themselves from sensory overload pre-pandemic by means of coping skills, which they often needed less of during lockdown, causing them to fear a loss of capability to cope with sensory overstimulation. Similarly, they fear to have lost their social skills, which makes the foreseen pressure to attend social events and return to a work/school environment with new social norms stress-inducing.
Other recurring topics for both adults with and without autism were worries about employment and finances, as well as worries about one’s own health and that of close others.
3.3.4 COVID-19 pandemic-related Changes That Made Life More Pleasant
Themes identified from responses of adults with autism to the open question inquiring about COVID-19 pandemic-related changes that made life more pleasant can be found in Table 9. One overarching theme was identified, as nearly all answers were related to changes that made the world a little more autism-friendly. Two subthemes further break down why. First, many adults with autism described a feeling of solidarity, now that their lives did not differ as much anymore from those of the people around them. For example, some adults with autism explained that, for once, the whole population had to socially isolate themselves for their own good – something that many adults with autism already have experience with, as they sometimes have to socially isolate themselves to reduce sensory overload. Second, lockdown reduced sensory and social overload. The outside world is quieter (i.e. less sensory stimulating), and many adults with autism described a feeling of relief from certain social stressors such as obligatory parties and appointments, spontaneous visits from others, or strangers getting too close.
Recurring topics that both adults with and without autism mentioned were: having more time for themselves (adults with autism particularly seemed to enjoy the extra time they could spend on their special interests) and for family, having complete control over their daily structure (e.g. when to take a break from work, when to relax), working from home (although people also acknowledged that this would not work for months on end), and the overall pressure/ social stressors of everyday life being diminished.
Lastly, we would like to acknowledge two additional points that this open question revealed. First, although not specific to the COVID-19 pandemic, many adults with autism revealed that they received crucial support from within the autistic community as they share their experiences with one another. Second, despite it being a small minority, it should be noted that there were some adults with autism for whom living conditions under the COVID-19 pandemic had actually improved overall, with the main reason for improvement being the reduced sensory and social overload.