Oxygen mask: understanding how autism parents seek support

Abstract

Parents with children on the autism spectrum often use online resources to find information and social support, but it is unclear whether these online spaces emulate the support and care practices that parents seek offline. Based on a series of interviews with 15 parents of children on the autism spectrum, we studied the qualitative aspects of how these parents seek, acquire, and share support in relation to their needs and caregiving practices. Our findings reveal that seeking and receiving support entail considerable efforts due to the challenges parents face while conveying information about their children to others, and due to how the provided support clashes with their needs. Analyzing these parents' accounts, we discuss implications for designing online spaces to help autism parents benefit from each other's experiential knowledge while accessing to emotional, instrumental and validated informational support.