"Maybe No One Knows We Need Help": Understanding the Experiences of Autistic Working Mothers in Australia

Autism Adulthood. 2024 Mar 1;6(1):47-59. doi: 10.1089/aut.2022.0089. Epub 2024 Feb 28.

Abstract

Background: Although there are no known studies investigating autistic working mothers, research has demonstrated that managing employment and motherhood in non-autistic populations has specific challenges, as does employment in autistic populations. This autistic-led study aimed at investigating the experience of autistic working mothers to identify benefits, challenges, and support needs.

Methods: We utilized a subjectivist epistemological perspective to learn about the experiences of autistic working mothers. We recruited 10 autistic working mothers (aged 34-50 years) via social media advertisements, who participated in a 45- to 60-minute semi-structured interview where we asked questions developed in consultation with a community reference group. We transcribed interviews and then analyzed them using inductive reflexive thematic analysis.

Results: We identified three key themes. The first theme, "Wellbeing: Work gives me purpose," discusses how employment supports mental well-being. The second theme, "Challenges: It's hard being an autistic working mother," includes the challenges of balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme, "The invisible disability: Everyone thinks I look okay," discusses the lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports that led to some participants no longer seeking assistance.

Conclusions: The responses of the autistic women who took part support a view that autistic working mothers may experience some similar challenges to non-autistic working mothers, including stress in juggling caring and work roles. They identified additional challenges related to their gender and their autistic identity, including a lack of understanding of the female (or "internalized") presentation of autism. These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.

Keywords: autism spectrum disorder; autistic parent; employment; gender; mental health; support.

Plain language summary

Why is this an important issue?: We did not find any existing research about the experiences of autistic women who are working mothers. However, we felt this was an important topic to investigate because previous research involving women who are not autistic has reported that being a working mother can be challenging. In addition, previous autism research has found that autistic people can find aspects of work difficult.

What was the purpose of this study?: We wanted to find out about the experiences of autistic working mothers and their support needs.

What did the researchers do?: We recruited 10 autistic working mothers (aged 34–50 years), through social media advertisements. We interviewed each participant separately and the interviews took between 45 and 60 minutes. We asked each participant the same set of questions to understand their perspectives on the benefits and challenges of being a mother, an employee, and a working mother, and to find out where they needed support. We then analyzed the interview transcripts to find common themes.

What were the results of the study?: We identified three key themes about the experience of autistic working mothers. The first theme called “Wellbeing: Work gives me purpose” discusses how employment supports mental well-being and financial independence. The second theme, “Challenges: It's hard being an autistic working mother,” includes the challenges in balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme called “The invisible disability: Everyone thinks I look okay” discusses a lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports for autistic working mothers that led to some participants no longer seeking assistance.

What do these findings add to what was already known?: We found that autistic working mothers may experience some challenges, which are similar to those identified in previous studies involving working mothers who are not autistic such as stress related to juggling being a mother and an employee. In addition to this, they may experience other challenges related to their gender and their autism, such as a lack of understanding of how autistic women mask and camouflage and assumptions by professionals that autistic working mothers are coping because they previously managed employment and parenting without any support.

What are the potential weaknesses in the study?: One limitation of our study is that the participant group lacks diversity. For example, it does not include autistic people from a range of cultural backgrounds such as First Nations Australians, or from a range of educational and socio-economic backgrounds. Although the study was open to participants who identify their gender as non-binary, no non-binary autistic people registered for the study. This meant our results only included the views of autistic working mothers who identify as women and have completed further education after high school. In addition, 90% of participants were diagnosed with autism as adults. Although late diagnosis is common, especially in women, it may also mean that some of the results were specific to this group. Future research could address these issues by having a larger participant group, which specifically includes those from diverse cultural, educational, and socioeconomic backgrounds, gender diverse participants, and both early- and late-diagnosed autistic women and non-binary people.

How will these findings help autistic adults now or in the future?: These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.