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The Changing Face of Autism in Brazil

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The Changing Face of Autism in Brazil Cult Med Psychiatry DOI 10.1007/s11013-015-9448-5 ORIGINAL PAPER The changing face of autism in Brazil 1 1 Clarice Rios • Barbara Costa Andrada Ó Springer Science+Business Media New York 2015 Abstract At the end of 2012, after intensive lobbying by parent activist asso- ciations, a federal law recognized autism as a ‘‘disability for all legal purposes’’ in Brazil. Defining autism as a disability was more than a change of legal status to guarantee social benefits. It was also a political maneuver, orchestrated by parent associations, aimed to take the responsibility for treatment away from the public mental health network of services. This article examines the controversies that have set parent associations in direct antagonism with mental health professionals in the public health system. We draw from ethnographic data and theoretical discussions in the field of disability studies to situate these controversies within the context of a larger debate on the relationship between health, rights, and citizenship. We found similarities between the ethical and political goals of parent activists and mental health professionals in Brazil, but we argue that the main cause of dissent is the role that each of these social actors assigns to identity politics in their clinical and political projects. Keywords Autism Á Public policies Á Disability Á Mental health Á Identity politics & Clarice Rios [email protected] Barbara Costa Andrada [email protected] 1 Institute for Social Medicine, State University of Rio de Janeiro, Rua Sa˜o Francisco Xavier 524, Rio De Janeiro CEP 20550-900, Brazil 123 Cult Med Psychiatry Introduction On April 10, 2013, the first National Conference of the Centros de Atenc¸a˜o Psicossocial Infanto-juvenil (Centers for Psychosocial Attention for Children and Youth—CAPSis) brought together mental health professionals from all over Brazil for three days of panels, roundtables, and political discussions about these centers’ current and future states of affairs. Although these centers serve children and teenagers with all kinds of troubles—defined very broadly by the professionals as ‘‘mental suffering’’—autism was a top priority in the Conference agenda. A little over a week had passed since the celebration of the World Autism Awareness day in Brazil, when the Federal Government released a national guideline on health care for people with autism. The Rede de Atenc¸a˜o Psicossocial (Network for Psychosocial Attention—RAP)1 initially led the process of writing the guideline with the help of professionals from other networks and public sectors. Nevertheless, the Federal Government ended up releasing another guideline, produced by the Rede de Cuidados a` Pessoa com Deficieˆncia (Network of Care to the Person with Disability—RCPD). While both guidelines became available for professionals in the public sector, the latter gained noticeably more visibility than the former. The atmosphere at the National Conference was understandably tense. More than an isolated event, the controversy about the guidelines on autism expressed larger dissent within the Sistema U´ nico de Sau´de (Brazilian Unified Health System— SUS), championed by parent activist associations fighting for the rights of their children in the autistic spectrum. Through intensive political lobbying, these organizations had not only demanded the elaboration of this guideline on autism in the first place, but had also guaranteed the approval of a Federal Law that defined autism as a ‘‘disability for all legal purposes’’ in December 2012 (Brasil 2012). Defining autism as a disability was more than a change of legal status to guarantee social benefits. It was also a political maneuver, orchestrated by parent associations aiming to take treatment responsibility away from RAP. Different social actors have been disputing the ontological status of autism—a disability or simply a form of mental suffering—and reconfiguring the terms of the debate. The advance of a neurobiological approach to autism has certainly played an important role in this dispute. Historically, defining autism in terms of an organic disorder has been an important strategy to defeat the psychogenic hypothesis2 (Eyal 1 The Sistema U´ nico de Sau´de (Brazilian Unified Health System—SUS) is organized regionally through a decentralized and yet interlinked network of health services and activities, formed by a complex set of public, private, and philanthropic providers. As part of SUS, the Rede de Atenc¸a˜o Psicossocial (Network of Psychosocial Attention—RAP) interacts and should work in conjunction with other networks and health care programs such as the Programa Sau´de da Famı´lia (Family Health Program—PSF) and the Rede de Cuidados a` Pessoa com Deficieˆncia (Network of Care to the Person with Disability—RCPD), as well as other sectors of public services (for example, programs in the area of education and social service). 2 The psychogenic hypothesis locates the primary cause of autism in the family environment and not in the individual organism. The personalities of parents and the kind of relationship they establish with the child with autism are the main focus of attention for researchers that adopt this perspective. Psychoanalytic theory, in its many interpretations and schools, has inspired different versions of the psychogenic hypothesis. Although the work of Bruno Bettelheim is the mostly widely known 123 Cult Med Psychiatry et al. 2010; Ortega 2009; Ortega and Choudhury 2011). Yet, although psycho- analysis is still a major theoretical influence for professionals working in the mental health network,3 the main terms of the controversy about autism in the Brazilian public health system are not framed around the opposition between an organic and a psychogenic approach to the etiology of and treatment for autism. Rather, social and political contexts play a more important role in framing the dispute over the ontological status of autism. Herein we examine the contours of such debate, focusing on the social and political aspects of the current controversies around autism in Brazil. We suggest that due to the Brazilian specific social and historical context these controversies cannot be easily reduced to diverging theoretical models, etiological accounts or therapeutic approaches, but instead can be better understood through a close examination of the arguments and mutual accusations that each side of the political debate deploys. We draw from discussions in the field of disability studies to shed light on the social and political aspects of disability, and argue that the main cause of dissent in the Brazilian case is the role assigned to identity politics in the different clinical and political projects for people with autism in Brazil. Identity politics and beyond In a provocative argument against the usefulness of an identity-based understanding of disability, Davis criticizes essentialist notions of identity in an effort to move toward a postmodern subject position, where disability is above all an unstable category that complicates identity claims (Davis 2013). His critique is centered mostly around the destabilization of a number of categories we have known concerning the body, especially after new technological and genetic developments in medicine and scientific research. According to him, rather than try to fix the unstable nature of disability, disability groups should abandon an identity model based on exclusivity and embrace the fact that ‘‘the power behind the concept is that disability presents us with a malleable view of the human body and identity’’ (Davis 2013, p. 273). Yet Davis recognizes that the centrality of identity politics in the disability movement cannot be ignored, especially in the first wave of political and academic movement around disability. At that moment, disability identities had to be ‘‘hypostasized, normalized and turned positive’’ against negative societal definitions (Davis 2013, p. 261). Siebers (2013) also recognizes the current distrust of identity, but attributes such rejection to a certain view of identity that associates it with lack, pathology, dependence, and a minority status. Siebers takes issue with ‘‘those who believe that identity politics either springs from disability or disables people for viable political action’’(2013, p. 283) Footnote 2 continued psychoanalytic approach to autism, other important scholars such as Frances Tustin, Anna Freud, Melanie Klein, D. W. Winnicott, Margaret Mahler and, more recently, Jacques Lacan, have also contributed to the development of psychoanalytic theories about autism. (See also Nadesan 2005). 3 This is especially the case in important Brazilian states, such as Rio de Janeiro, Minas Gerais, and Sa˜o Paulo. 123 Cult Med Psychiatry and suggests that identity is ‘‘an epistemological construction that contains a broad array of theories about navigating social environments’’ (2013, p. 283). For Siebers a disability-based identity is above all an inherently political category that is potentially able to offer social critiques, rather than an entity with definite contours, fixed in time and exclusively biological. He writes that disability needs to be thought not in terms of a defective body, but of complex embodiment in its multiple intersections with other critical identities such as race, gender, sexuality, and class. The reification of identity categories is just one of the issues raised against the use of identity within the political and academic movement around disability. These authors seem to take for granted that social
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