A labour of love: Consequences of caregiving for an autistic child on mothers’ employment, financial status, and well-being

Parents of autistic children report many benefits of caregiving, including improved family relationships and personal growth. However, there are also significant financial and emotional costs associated with this role. This has important consequences on women in particular who often tend to be the primary caregivers. Yet, despite this, few studies have examined the impact of caregiving on the financial and emotional well-being of mothers of autistic children. To address this gap, the current study sought to: 1) Compare the difference in income between mothers and fathers of autistic children in the same household; 2) Examine if the number of hours mothers spend navigating services predict their mental health after controlling for family income, child level of support needs, and education; and 3) Explore the impact of caregiving responsibilities on maternal work and employment. A total of 902 Ontario mothers of autistic children aged 17 years or younger completed a survey with both closed- and open-ended questions. Quantitative results indicated that mothers report a significantly lower average annual income compared to fathers. After controlling for demographic factors, regression analyses revealed that the number of hours spent navigating services predicted emotional well-being for mothers. Qualitative findings revealed various impacts of caregiving on mothers’ work and employment. Together these findings indicate that there are significant gender inequities in income and employment having a detrimental impact on women’s financial independence and well-being. • The current study examines how caregiving affects the financial and emotional well-being of mothers of autistic children. • Mothers of autistic children earned only 66% of what fathers earned, highlighting substantial income disparities. • Qualitative findings revealed that navigating services negatively impacted mothers' careers and job satisfaction. • Hours spent navigating services impacted maternal mental health, indicating gender-based disparities in well-being. • Findings highlight the need for policies that support caregivers through improved services and flexible employment.