COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study

Abstract

The COVID-19 pandemic and its policy responses have had a detrimental effect on millions of people’s mental health. Here, we investigate its impact on autistic people and their families using qualitative methods. Specifically, we addressed: how did autistic people experience an increase in social isolation during the initial lockdown? And how was their mental health impacted by lockdown? Autistic and non-autistic researchers conducted 144 semi-structured interviews with autistic adults (n = 44), parents of autistic children (n = 84) including autistic parents and autistic young people (n = 16). We deployed thematic analysis to identify key themes. The enhanced social isolation accompanying the pandemic had a serious and damaging impact on autistic people’s mental health and subjective wellbeing. They spoke of intensely missing friends and more incidental forms of social connection. They also reported intense dissatisfaction with the substitution of embodied, person-to-person connection in health services by online/telephone-based alternatives, sometimes accompanied by serious negative consequences. These findings reveal the fundamental importance of supporting autistic people to maintain direct and incidental social contact during the pandemic and beyond. They speak against established theories that downplay autistic people’s need for human connection and the extent to which they have been affected by social isolation during lockdowns. Lay abstract In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12–18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people’s mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics.

Burnt Out and Dropping Out: A Comparison of the Experiences of Autistic and Non-autistic Students During the COVID-19 Pandemic

“…For all, the most reported challenge related to the social impact of the pandemic – over a quarter of both groups described how social disconnection had negatively affected them. This finding mirrors Pellicano et al’s (2021) research with Australian autistic people and goes against the stereotyped view that autistic people lack social interest and our findings support counter-arguments to the theoretical proposal that autistic people lack social motivation ( Jaswal and Akhtar, 2018 ). University can offer many social opportunities for autistic people, and while they may face challenges within social environments ( Scott and Sedgewick, 2021 ), we must find ways to enable autistic students to flourish socially in pandemic-adapted universities.…”

“…In a sample of 1,044 autistic adults from Belgium, Netherlands, and the United Kingdom, Oomen et al (2021) found increased depression and anxiety for autistic adults during the pandemic, as well as many missing social contact. Pellicano et al (2021) interviewed autistic adults, autistic young people, and parents (autistic and non-autistic), mostly from Australia, noting that although lockdowns brought fewer social pressures and reduced masking, many reported a negative impact of not being able to connect with other people, with mental health deteriorating. Together, these studies show the overall negative impact of the pandemic for autistic people, although we do not know much about autistic students’ experiences.…”

Parenting Children with Autism Spectrum Disorder during Crises: Differential Responses between the Financial and the COVID-19 Pandemic Crisis

“…They reported high levels of psychological distress and disruption in their lives during the pandemic [ 31 , 34 , 37 , 38 , 39 , 40 , 41 , 42 ]. Some possible positive aspects of experiences during the pandemic have been also reported by parents of typically developing children [ 43 , 44 ] and caregivers of children with ASD [ 28 , 32 , 35 , 44 , 45 , 46 ]. These include the elimination of many daily pressures [ 32 , 45 ]; creating a more relaxing environment [ 28 ]; having more time to teach new skills, such as autonomy or house care-related skills [ 46 ]; having opportunities for increased family interaction and strengthening relationships [ 35 ]; developing positive characteristics such as appreciation, gratitude, and tolerance; and finding new hobbies [ 44 ].…”

“…Changes in daily structure, attempts to mitigate lost opportunities for children’s learning and social interactions, increased screen time, and reduced physical activities are factors that have been discussed as important stressors for parents [ 23 , 24 ]. The population of children with disabilities, in particular autism, gained special attention; both opinion [ 25 , 26 , 27 ] and research papers discussed the possible impact of the COVID-19 pandemic on individuals with ASD [ 28 , 29 , 30 , 31 , 32 , 33 ] and their families [ 28 , 31 , 32 , 34 , 35 ]. They suggested strategies for them to better accommodate to the situation.…”

The impact of COVID-19 Lockdown on Children with Autism Spectrum Disorder and their families in Tripoli, Libya

“…Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep mixing up, socializing and meeting their friends even through difficult times, like pandemics [10]. People with mental health conditions could be more significantly influenced by the emotional responses brought on by the COVID-19 epidemic, resulting in declining or deteriorating of an already existing mental health condition because of high vulnerability to stress compared with the general population [11].…”