Facing Change and Uncertainty: Lessons Learned from Autistic Children and their Families During the COVID-19 Pandemic.

Abstract

The COVID-19 pandemic presented a great challenge for individuals around the globe, and particularly for vulnerable populations such as autistic children. This qualitative study explored the experience of autistic children (both verbal and minimally verbal) and their families during the pandemic in August-October 2020 through the lens of 18 parents recruited from an opportunistic follow-up of a randomized controlled trial. Findings revealed that the pandemic was detrimental to the mental health of most parents. School closures, disrupted routines and concerns of the virus were believed by parents to be particularly responsible for increased in their child's behaviour that challenges and anxiety, resulting in changes in acquired skills and development of tics for some. However, other parents reported that increased one-to-one interaction with their child improved their social interaction and communication. Additionally, families felt more able to cope with the situation when supported by their partner, support services and schools. The findings highlight the challenges and benefits experienced by families with an autistic child during the pandemic. They provide valuable insights into potential areas that warrant attention when preparing for future emergencies. Enhancing our ability to respond to the needs of autistic children and their families, and establishing policies that can support their well-being should be prioritised to effectively address future challenges.