“I want to see my friends”

The everyday experiences of autistic people and their families during COVID-19

Despite all the talk of being “in it together”, the COVID-19 pandemic and the resulting lockdowns have had dramatically varied effects on different communities across Australia and the world.

This report was developed by Macquarie University, RMIT University, University of Sydney, University of Western Australian and Reframing Autism and is the first major investigation into the impact on autistic people and their families.

The report draws on in-depth interviews with 131 people over 115 hours, conducted by both autistic and non-autistic researchers.

It reveals that while many autistic people welcomed enhanced financial support from the government, the increased accessibility of some health and educational services and the slowing down of pressurised routines, they nonetheless felt worryingly unsupported during the pandemic.

In particular, interviewees reported that they found government messages conflicting and confusing, efforts to move therapies and other health support online unsatisfactory and individualised support for schooling from home lacking.

Most strikingly, and in contrast to what might have been expected by some autism researchers, interviewees also emphasised the difficulties brought by the social isolation that followed from strict lockdown requirements.

Young people and adults alike spoke movingly of missing friends and of the challenges generated by the absence of broader, more incidental, forms of social connection.

Many mentioned the detrimental impact that such disconnection had on their mental health. 

Read the full report