Janus-Faced Mothering and a Cruel Story of Blame: The Representations and Lived Effects of Mothering an Autistic Child

There are two main aims of this thesis. The first is to examine how autism and mothers of autistic children are represented and understood. The second is to examine how mothers of autistic children negotiate this subject position and its lived effects. Currently, there is minimal research that explores the representation of mothers of autistic children. Furthermore, as diagnostic rates of autism increase, we have a group of mothers that are increasing in numbers, are potentially vulnerable and are vital to the sustainable functioning of our community. I apply a poststructuralist, Foucauldian and feminist methodology. The data is drawn from three main sources: Australian newspapers; the website Generation Rescue and its president (Jenny McCarthy); and, interviews with mothers of autistic children. Prior to my research chapters, I provide an overview of what knowledge has already been explored and is central to my research. I also examine how autism has been constructed and how prominent mothers are in this construction. The first two research chapters analyse public data – newspapers and Generation Rescue. The dominant way autism was represented was as the undesirable subject whose existence should be eradicated. Cause dominated the newspapers whilst cure dominated Generation Rescue. Mothers were represented as devastated warriors who fought tirelessly for the autism community or to rescue their ‘true’ child. Both mother-blame and responsibility were prominent. The ‘right’ to have a non-autistic child, the child a mother ‘deserves’, was tied up amongst the assumed duties mothers were required to perform to ensure they obtained this child. Findings from my interviews suggest that whilst the subject position of mother of an autistic child was placed upon all mothers interviewed, how the subject position was negotiated differed. There were various contradictions in the way mothers were invited to negotiate the subject position of autism mother. These contradictions construct a style of motherhood I refer to in my conclusion as ‘Janus-Faced Mothering’. Mothers interviewed held a stronger attachment to development rather than cure. Although engagement in various types of therapy was considered important, mothers felt this engagement should not override their child’s right to be ‘just be a kid’, nor require engaging in practices they were not comfortable with. An important finding from my interviews was that when a mother failed to meet the prerequisites of the ‘good mother’, it was the deviant characteristics of the individual mother that were the target of blame. All mothers felt as though they were in a situation where the masses watched the few. The social institutions of government and education were prominent sites where power was deployed. Mothers were held responsible for the development of their child and the child’s ability to be disciplined. Resistance meant mothers became further embedded in the intensive-mother discourse. Overall, findings identified the dominance of medical discourse and the ‘good’ and ‘bad’ mother discourse. Medical discourse set the standard for the child, discourses of motherhood set the standard for the mother.Thesis (Ph.D.) -- University of Adelaide, School of Social Sciences, 201