Ever vigilant: maternal support of participation in daily life for boys with autism

This study presents emergent findings from a qualitative study of caregivers' well-being that illuminates why caregivers of children with autism are often found to be more stressed by their caregiving than caregivers of children with other disabilities. Nine mothers with diverse backgrounds whose sons had autism spectrum disorders participated. Data were gathered through intensive interviewing and analyzed using a deductive interpretive approach. Mothers characterized their caregiving as vigilance rather than burden. Yet, this vigilance was highly fatiguing. Mothers intensely attended to their children's activities. This intense focus promoted participation in self-care, leisure, and social activities, and prevented frustration and behavioral meltdowns. Mothers also performed "forensic analyses" to understand the root cause of participation problems. This parenting was intensive because mothers oversaw the children's activities at all times even during periods when mothers of typical children could take breaks. The children's continuing participation problems included limited self-care skills, difficulties in problem solving in novel situations, and lack of leisure skills. This intense vigilance may be a key factor in maternal health issues, such as anxiety and depression. While these problems fall within the scope of occupational therapy's expertise, it appears that many of these issues were not addressed by the current service-delivery models, leaving families to continue to struggle and the children to lack the skills for independent living as adults.