title: A consideration of medicalisation: choice, engagement and other responsibilities of parents of children with autism spectrum disorder.
abstract: Classic studies of medicalisation point to the 'rise of the experts' as disempowering patients and refusing to acknowledge their expertise in their own lives. More recently, medicalisation scholarship has taken a different turn, arguing that patient choice is both a responsibility imposed on patients, and a driver of medicalisation. To what extent does autism, a childhood developmental disorder in which parents are invited to take a close role, instantiate these different manifestations of medicalisation? This paper reports on a qualitative study of parents' experience of diagnosis and treatment, conducted in four states in Australia in 2008-2009. It draws on 49 interviews with parents of young children with autism, and with early intervention service providers and clinicians. Our study shows that the importance of choice in decisions around treatment cannot be subsumed under the single category of disenfranchisement or engagement. The diverse responses of parents to the diffuse, complex field of autism treatment illustrate an admixture of consumption, advocacy and education driving contemporary medicalisation.
authors.affiliation: University of New South Wales, Social Policy Research Centre, G2 Western Campus, New South Wales, Australia. k.valentine@unsw.edu.au
authors.forename: Kylie
authors.initials: K
authors.lastname: Valentine
mesh_terms: D001315:Australia; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis / Q000628:therapy*; D002675:Child, Preschool; D002755:Choice Behavior; D003256:Community Participation; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D036301:Qualitative Research; D012941:Social Responsibility