Lockdown experiences and views on future research participation of autistic adults in the UK during the first six months of the COVID-19 pandemic
The COVID-19 lockdown was a set of nationwide public health restrictions in force on the UK from March 2020 in response to the coronavirus pandemic. Co-occurring anxiety and depression in autistic people placed them at heightened risk of potential adverse mental health due to the lockdown. Furthermore, the impact of current and future public health measures on autistic people’s willingness to take part in autism research was unknown. We carried out in-depth interviews with 31 autistic adults exploring their experiences of the COVID-19 lockdown and how the pandemic may affect future research participation. Transcripts were analysed thematically within a critical realism framework. Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, e.g., rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown which may exacerbate already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication. The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, healthcare providers and researchers need to be mindful of rising mental health issues during the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive.