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.
Keywords: COVID-19; autistic parenting; participatory research; supports and services.
Why is this an important issue?: There is very little research about what autistic parents think about being a parent and how they manage in their everyday lives.
What was the purpose of this study?: We, a group of autistic and non-autistic researchers, worked together to look at autistic people's experiences of life during the COVID-19 pandemic. In this study, led by an autistic parent, we focused on understanding what parenting was like for autistic parents during this time.
What did we do?: We spoke to 35 autistic parents, mostly from Australia, about their experiences of life during the first COVID-19 lockdown. Almost all parents were women. They each spoke to us for about 1 hour. We discussed questions like, “What has been difficult for your child about being required to stay at home? And what has been positive about it? What about you? How have you found having to stay at home?”.
What were the results of the study?: Autistic parents told us that life before COVID-19 could “be really hard.” Their days were spent focusing on their children and supporting them, but they felt life became a bit simpler during lockdown. They also did not have “to go out in the non-autistic world,” which they found exhausting. But lockdown made things difficult, too. Autistic parents told us that they were stressed about trying to juggle everything at home, such as home learning, working from home, and cleaning the house. They also felt that they were the ones supporting everyone else. This meant they did not get the rest they needed. They were also worried about COVID-19. These worries and pressure often had a terrible effect on autistic parents' mental health. They wanted to reach out to their friends—especially autistic friends—for help but often could not. There were few other supports available to help them. Even when things were difficult, they told us that they nonetheless felt connected with their children during lockdown and that they were putting their children's mental health first, above everything else.
What do these findings add to what was already known?: This study shows how hard everyday life can be for autistic parents. These parents usually rely on their friends for support. But they could not do that during lockdown. This meant they had to get help from more official supports and services. But these often just were not available. As a result, autistic parents felt “very much forgotten” as a group.
What are potential weaknesses in the study?: Most of our participants were women, well educated, and White. We do not know if our autistic parents' experiences would be the same for other autistic parents, such as autistic fathers or those from other racial/ethnic backgrounds.
How will these findings help autistic adults now or in the future?: These findings show how important it is to understand how we can support autistic parents and make their lives better during times of crisis and in more normal times. This needs to be done in partnership with autistic parents.
Copyright 2023, Mary Ann Liebert, Inc., publishers.