This mixed-methods study examined the impact of professional services on employment and leisure participation of mothers of children with autism. In Phase 1, 139 mothers with a child with autism completed a comprehensive survey addressing their experiences with services and occupational participation. In Phase 2, in-depth interviews, informed by grounded theory methodology, were conducted with a sub-sample of 19 mothers to discuss their experiences with services and the relationship between services, employment, and leisure participation. Findings revealed that discontinuity of services was a significant predictor of disrupted employment and/or leisure. A process of occupational imbalance and sacrifice emerged related to mothers' foregoing participation in personally meaningful occupations to focus time on navigating and participating in professional services for their child. Our findings suggest that many professionals who work with individuals with autism conceptually value family-centered care; yet, actual services often ignore family issues and focus exclusively on the child.
Copyright 2014, SLACK Incorporated.