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

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. © 2008 Blackwell Publishing Ltd.

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