The Impact of Autism Services On Mothers' Workforce and Leisure Participation and Wellbeing

Background: Autism is a pervasive neuro-developmental disorder that affects the entire family system. Professionals often work with families to address the needs of the child with autism, yet the needs of parents are rarely addressed even though their participation in meaningful activities may improve child development. 

Objectives: To investigate the impact of professional services on mothers’ ability to participate in personally meaningful employment and leisure activities, and the relationship between service characteristics and maternal wellbeing.

Methods: A sequential, mixed-methods approach was used. N=139 mothers of children (age 2-29 years) with autism completed a detailed questionnaire including: (1) detailed child, mother and family demographic information; (2) detailed questions on maternal employment and leisure participation; (3) professional service information including frequency of contact, number of professionals, and service location (Education and Rehabilitation Services Questionnaire; Remple, Rogers & Majnemer, 2010), continuity of services over time and across sectors (Alberta Continuity of Services Scale for Mental Health, Adair et al., 2001), perceptions of family-centered care (Measure of Processes of Care, King et al., 2004); and (4) indicators of maternal well-being, including the Perceived Stress Scale (Cohen et al., 1983) and Parenting Sense of Competence Scale(Gibaud-Wallston & Wandersman, 1978). A sub-sample of 20 mothers who completed the questionnaire, purposefully sampled for diversity in child and family characteristics, participated in a semi-structured interview to discuss their experiences in more depth.

Descriptive statistics, including demographic information, supports and services data, and employment and leisure data were calculated to describe the sample and test the impact of professional services on employment and leisure participation. Path analysis was employed to determine the impact of professional services on maternal wellbeing, and potential child, mother or family variables that may influence outcomes. Qualitative interviews were content analyzed using constant comparison methods consistent with a grounded theory approach (Creswell, 1998; Strauss & Corbin, 1998).

Quantitative and qualitative findings were integrated to contribute to a formative understanding of the impact of professional services on mothers’ participation and wellbeing. 

Results: Preliminary results indicate that professional services decrease mothers’ ability to participate in the paid workforce and personally meaningful leisure activities, even as children became older. Controlling for parent-perceived need and frequency of services, we found that higher number of professionals, discontinuity of services, and home-based services were significantly associated with decreased maternal wellbeing. We found no statistically significant association between perceptions of FCC and maternal well-being.

Conclusions: This study suggests that mothers’ sacrificing their own participation and wellbeing for professional services for their child with autism. Since maternal wellbeing, positively associated with mothers’ participation in personally meaningful activities, can positively affect child development and wellbeing, a focus on participation and wellbeing of mothers of children with autism may have collateral benefits for the entire family.