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Specialism, specificity and identity – the controversiessurrounding autism in the Brazilian Unified Health System (SUS)

Abstract

The passing of federal law 12,764/2012 marked a victory for the political activism of parents of autistic individuals in Brazil, but it also drew attention to the serious antagonism between parents of autistic individuals and the mental health network. This article examines the perspectives of social actors involved in the controversy that took place after the enactment of this law and seeks to show why this controversy precedes the passing of the law and is not resolved by it. The argument is that the troubled relationship between the political movement of parents of autistic individuals and the mental health network can be better understood when the construction and consolidation of a network of expertise around autism spectrum disorders as being inseparable from the construction of a social and political identity for autistic people in Brazil is taken into consideration. The article draws inspiration from the Studies of Expertise and Experience, which discuss the new regime of relations between scientific research and civil society. Nevertheless, it is also seen that the consolidation of this expertise network has arisen despite the absence of a broad specialized treatment network and of a profound reconfiguration in the regime of scientific research and production of knowledge about autism in Brazil.

Autism; Expertise; Experience; Identity

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