From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum

Abstract

Background For parents of disabled children, the role of advocate often develops to a level of frequency and complexity that other parents do not usually face. This paper considers whether this high level of advocacy translates into a form of activism on the part of mothers and if so, why this shift might occur. Materials and Methods The broader study from which the data are taken aimed to explore the experiences of living with autism. Qualitative methods were used to understand how participants made sense of their lives and negotiated the social world. This analysis is based on interviews with 36 mothers of children on the autism spectrum. Results Most mothers adopted an enhanced advocacy role acting either independently or collectively through involvement with support groups. In both cases, some mothers demonstrated an activist role and extended their efforts towards campaigning for change outside of their families. Conclusions Mothers’ experiences do not sit comfortably within existing articulations of activism but suggest that advocacy and activism may be experienced on a continuum. For many mothers, advocacy and activism are a major part of the experience of mothering a disabled child yet this remains a largely unrecognized role.

Policy Awareness, Financial Hardship, and Work Impact

“…Parents find themselves as a critical source of support and advocacy for the child's treatment, yet they may have little to no formal knowledge or education of the complexities inherent in this neurological condition (Tomes, 2007;Valentine, 2010). This lack of knowledge is very stressful for parents who often feel disempowered by the health care systems they must rely on to assist their child or children with ASD (Hutton & Caron, 2005;Ryan & Cole, 2008;Valentine, 2010).…”

“…These negative experiences appear to be heightened by parents' difficulties accessing services for their child (Hutton & Caron, 2005). Some parents report feeling so upset and disempowered that they become an activist for children with disabilities (Ryan & Cole, 2008). Social activism is one way in which parents have empowered themselves as stakeholders in the care for their children with ASD, which has led to improved care.…”

“…Children are increasingly diagnosed with ASD during early childhood, rather than later in life (Hutton & Caron, 2005;Ryan & Cole, 2008). During this stage of life, they are dependent upon parents for all of their care; this is particularly so for children who have ASD (Bayat, 2007;Gray, 1994Gray, , 2002.…”

“…Parents-especially mothers-play a vital role in that activism because they are often case managers of their child's care for ASD (Baker & Drapela, 2010;Hutton & Caron, 2005;Leiter, 2004b;Ryan & Cole, 2008;Todd & Jones, 2003). Because the American health care system is largely privatized, case management activities usually involve coordinating the child's needs with both the health care provider and the health insurance carrier.…”

“…While several analyses have carefully studied how parents of children with ASD are treated by individuals working in the health care system (Gray, 1993;Hutton & Caron, 2005;Ryan & Cole, 2008) and how they engage treatment options offered by their health care providers (Valentine, 2010), the role of a critical player in care for persons with ASD-the health insurance carrier-is largely absent from scholarly study of parent care for children with ASD. This distinction is not a minor one.…”