“I'm the Family Ringmaster and Juggler”: Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic

• Published in: Autism in adulthood Vol. 5; no. 1; pp. 24 - 36
• Main Authors: Heyworth, Melanie, Brett, Simon, den Houting, Jacquiline, Magiati, Iliana, Steward, Robyn, Urbanowicz, Anna, Stears, Marc, Pellicano, Elizabeth
• Format: Journal Article
• Language: English
• Published: United States Mary Ann Liebert, Inc., publishers 01.03.2023
• Subjects: Original Research; COVID-19; participatory research; supports and services; autistic parenting
• ISSN: 2573-9581; 2573-959X
• DOI: 10.1089/aut.2021.0097

Background: Little is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed. Objective: This study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic. Methods: Thirty-five Australian autistic parents (95% women) of autistic children (aged 4–25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set. Results: Autistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the “cumulative stress” of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt “very much forgotten.” Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's “mental health ahead of everything else.” Conclusions: Our analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.