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.

Investigating the impact on autistic people and their families, this 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.

Drawing these themes together, the report makes a series of key conclusions intended to influence on-going policy responses to the COVID-19 pandemic. These include:

1. Preparation is vital: All levels of government need to invest in their emergency planning and have a distinct strategy for supporting potentially vulnerable groups, including autistic people. Such a strategy would be considerably stronger if it involved autistic people themselves in its design.
2. Flexibility, time and reflective space matter: The best of the COVID-19 experience was the opportunity to spend more time at home, often with family. This released autistic people from the pressures of everyday timetabling and expectations and was warmly received by many. There is more that could be done to enable autistic people to enjoy these opportunities during more “normal” times.
3. Technology is not a stand-alone healthcare solution: Existing, face-to-face support structures are critical for the wellbeing of autistic people and must not be closed down again if at all possible without adequate alternatives being put in place. Continuity of care is vitally important to autistic people and their families, as are the social contacts and relationships that often come from service delivery.
4. Supports for learning from home need radical improvement: Many parents reported feeling overwhelmed being responsible for directing their child’s learning during this time, particularly if they were juggling other demands such as working from home themselves. Social relationships are crucial to educational wellbeing and strong, trusting connections between teachers and students need to be maintained to enable flexible – and differentiated – learning to be continued.
5. Friendship and sociability need conscious support: Very little formal government effort was made during the first few months of COVID-19 to support autistic people in maintaining friendships and social connections. This was a serious mistake. A national plan for deepening and maintaining social relationships is a clear priority for Australia emerging from the first phase of COVID-19.

Download the full report (pdf, 865KB)

Download the Easy Read summary (pdf, 682KB)

Research team: Liz Pellicano, Simon Brett, Jac den Houting, Melanie Heyworth, Iliana Magiati, Robyn Steward, Anna Urbanowicz and Marc Stears

A collaboration between Macquarie University, RMIT University, the University of Western Australia, the Sydney Policy Lab, and Reframing Autism.