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Table 7 Themes identified from responses of adults with autism to the following open question: What changes, due to the effects of the COVID-19 regulations on your everyday life, are the most difficult for you (if any)?

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

Theme Example quote
Loss of routine “Usually I try to have five (sometimes short) live contacts every day, as otherwise I get lonely, which isn’t possible right now. I usually also have fixed events (library, movie, class, market,..) that give structure to my life, which I’ve also lost” [Translated] p. 1
“Every form of external structure to my days have disappeared. Since I don’t do well having to structure my day by myself, I’m not doing well with that” p. 610
“Knowing that I can’t go out even if I would normally choose not to is hard. It’s also hard not following normal routines and meeting with people I would normally. I had just started going to a group to help with my social interaction which has had to stop. It’s hard knowing I was making positive steps towards improving my social interactions and I’ve had to pause it. I know it is a needed measure to stop the virus but it’s still hard” p. 205
“Almost everything that was in my diary has fallen away. The first days after the measures were announced, and subsequently when they were being made stricter, I had to keep scratching things, until there was almost nothing left. All that unstructured time to be planned in again makes me very agitated.” [Translated] p. 14
Loss of social contact “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.” p. 257
“The smallest social things I have managed to do so far (even if that is only one hug a month) from which I receive support, are now completely gone” [Translated] p. 25
“The lack of social and physical contact is debilitating. And the uncertainty about how long I have to keep this up takes me into a downward spiral” [translated] p. 2
“I’ve kind of liked having my own “sanctuary” at my house and being able to control my involvement with others but I am human, despite autism, and I am starting to miss the option of socializing” p. 977