COVID-19, Social Isolation and the Mental Health of Autistic People and Their Families: A Qualitative Study

Abstract

Background:  The COVID-19 pandemic and the policy responses to it have had a detrimental effect on the mental health of millions of people but have impacted differently on different groups. This is the first in-depth investigation of the impact on autistic people and their families. Specifically, we addressed: How did autistic people experience the increase in social isolation as a result of measures put in place by government during the initial lockdown period? And how was their mental health impacted by lockdown?

Methods:  Autistic and non-autistic researchers conducted 144 in-depth semi-structured interviews with autistic adults (n=44), parents of autistic children including autistic parents (n=84), and young autistic people aged 12 – 18 years (n=16). We deployed reflexive thematic analysis to identify key themes.

Findings: The enhanced social isolation that has accompanied COVID-19 had a serious and detrimental impact on autistic people’s mental health and subjective sense of wellbeing. During the interviews, young autistic people and adults alike spoke of intensely missing both 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 computer or telephone-based alternatives, sometimes accompanied by serious negative consequences for mental health. 

Interpretation: These findings reveal the fundamental importance of supporting autistic people to maintain both direct and incidental social contact during the pandemic and beyond, in contrast both to established scientific accounts of autism and standard clinical and policy practice.

Funding Statement: This project has been funded through an Australian Research Council Future Fellowship, awarded to EP (FT190100077).

Declaration of Interests: EP receives occasional fees for workshops and invited addresses, and grants from the Medical Research Future Fund, the Cooperative Research Centre for Living with Autism ('Autism CRC'), Australia’s National Health and Medical Research Council, Positive Partnerships (Australia), and the European Commission. JDH reports grants from the Cooperative Research Centre for Living with Autism, during the conduct of the study. MH reports grants from Department of Social Securities, Australian Government, and the National Disability Insurance Agency. All other authors declare no competing interests.

Ethics Approval Statement: Ethical approval for this study was received from the Human Research Ethics Committee at Macquarie University (Project ID 6665). All participants, including young people, provided written informed consent prior to taking part; parents provided additional consent for young people.