Cult Med Psychiatry DOI 10.1007/s11013-015-9448-5 ORIGINAL PAPER

The changing face of autism in Brazil Clarice Rios1 • Barbara Costa Andrada1

 Springer Science+Business Media New York 2015

Abstract At the end of 2012, after intensive lobbying by parent activist associations, 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  Public policies  Disability  Mental health  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

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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 ´ nico de Sau´de (Brazilian Unified Health System— dissent within the Sistema U 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

´ nico de Sau´de (Brazilian Unified Health System—SUS) is organized regionally through The Sistema U 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).

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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

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et al. 2010; Ortega 2009; Ortega and Choudhury 2011). Yet, although psychoanalysis 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.

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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 actors will somehow be able to forge such identities and positively manipulate them for political purposes. In reality, disability identities and political movements surrounding them do not follow a single formula; rather, they are dependent on different factors such as the kind of impairment involved, and the social, cultural, and historical conditions in which they emerge. The distinction between impairment and disability has had a crucial influence in the way that the debates around disability identities have been organized (Campbell 2009; Shakespeare 2006). Overall, disability scholars and activists connect impairment with medical institutions and medically defined conditions, and think of disability as the socially constructed disadvantage based upon such impairment. Disability activists have worked hard to distance the disability identity from a focus on impairment because medical practices are seen to reinforce an individualized and deficit focused form of identity. The medical perspective is criticized for setting standards of ‘‘normality’’ for the body–mind, as it deals with impairment simply as something to be fixed or cured in the individual body. Disability in this case is reduced to impairment, and dealt with only at the individual level. To counter medicalized and individualized accounts of disability, also referred to as the medical model of disability, these activists and scholars put forward a social constructionist approach to disability, also known as the social model of disability. According to social model perspective, disability is the result of an oppressive social and cultural environment that turns impairment into a negative by creating barriers to access (Shakespeare 2006). Although the very distinction between impairment and disability has been criticized over the years (Anastasiou and Kauffman 2013; Campbell 2009; Shakespeare 2006), it had an important role in denouncing the historical oppression and exclusion of people with disabilities. It also led many scholars and activists to ignore or dismiss impairment as an important, though not exclusive, aspect of the construction of disability identity (Wendell 2013). On the other hand, regardless of all the problems with the medical model of disability, a disability identity focused exclusively on a specific impairment is in fact quite problematic. According to Davis’ and Siebers’ critiques, the nature and the boundaries of such impairments are not easily defined, and a bounded and exclusive identity is a concept difficult to defend to in a postmodern world. Yet, whether based on impairment or not, bounded or not, identity has been, and still is, a central political force within the disability rights movement. The case of autism presents interesting challenges to an identity-based conception of disability and to the traditional dichotomy between impairment and

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disability. Political movements about this category have polarized into what Hart calls a ‘‘caricatured, but commonly articulated’’ debate, opposing on one side ‘‘parents of ‘low-functioning’ children who consider autism a disorder that should be remedied, treated, cured or ‘defeated’’’ (autism-as-disorder view), and on the other side what he calls autism-as-difference view—‘‘a band of articulate ‘highfunctioning’ autistic self-advocates who see autism as one among many types of human difference […] which should be respected, even celebrated, but certainly not ‘cured’ or muted through medical or behavioral treatments’’ (2014, pp. 289–290). The autism-as-difference view is also known as the neurodiversity movement, and constructs an identity based on what Judy Singer (1999) has called ‘‘neurological self-awareness’’ and a rejection of psychological interpretations. This movement has fiercely criticized the medical model of disability, more specifically in regards to the idea of cure (Fein 2012) and to the ethical limits of certain treatments (Dawson 2004). On the side of the autism-as-disorder view, we find parents who are also aligned with an organic conception of autism, but favor various interventions to ameliorate or even cure autism. These parents also reject psychological interpretations of autism, especially those traditionally associated with psychoanalysis in the 1950s and 1960s, which are said to blame parents (Friend 2014). One source of controversy in this debate refers to the very people who align around autism as an identity marker. As discussed above, in the first group, there are mostly parents, not self-advocates, of the so-called ‘‘low-functioning’’ children, whereas in the second group there are mostly ‘‘high-functioning’’ autistic selfadvocates. This situation led parents to criticize autistic self-advocates of not representing the whole spectrum (Ortega 2009). In fact, as Nadesan points out, autism self-advocates construct their identity around a deep structure model of autism that ‘‘presupposes an ontological divergence between non-autistic people and autistic people’’ and that attributes to each group ‘‘a certain ontological homogeneity’’ (Nadesan 2005, pp. 208–209). Still according to such logic, distinctions such as ‘‘low-’’ or ‘‘high-functioning’’ are seen as variations of degree and not of any significant ontological difference (Ortega 2009). Parents, on the other hand, are not autistic themselves; they might not see their children as being autistic, but instead as having autism (Weintraub 2005). Yet, they also create a specific identity related to autism that of ‘‘parents of children with autism.’’ For example, in her ethnography of parent activist associations in the state of Rio de Janeiro, Nunes shows how in their journey into political activism, these parents give a new meaning to their particular experiences with their children, and adopt a shared identity of ‘‘parents of children with autism’’ (Nunes 2014). Another aspect of their dissent refers to the general goal of these political movements—the parents of ‘‘low-functioning’’ children are mostly interested in treatment and/or cure, and therefore aligned with a medical model of disability, whereas ‘‘high-functioning’’ self-advocates are more interested in being accepted with their idiosyncrasies. Hart questions such polarization by showing that parents can use autism therapies to achieve neurodiverse ends, as they use them to create ‘‘a technical infrastructure to support autistic personhood’’ (Hart 2014, p. 284). As a consequence of this polarization, the relationship between impairment and disability is also poorly problematized. Seen exclusively from the perspective of the

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neurodiversity movement, it would be easy to define disability as consequence of the oppressive demands from neurotypicals to make autistic people as ‘‘normal’’ as possible. But can we really assert that the difficulties faced by people with autism result simply from lack of social acceptance? Impairment, on the other hand, carries negative connotations because it is usually understood in terms of biological or physical ‘‘defect’’ or ‘‘lack.’’ In reality, to the extent that autistic impairments refer to embodied interactions in sociocultural contexts, they are not simply biologically determined, nor totally socially produced. In fact, that is also true to other forms of disability and several disability scholars have criticized the dualism accompanying the theoretical distinction between disability and impairment. For them, disability is ‘‘the result of negative interactions between a person with an impairment and his or her social environment’’ and therefore a ‘‘profoundly relational category’’ (Ginsburg and Rapp 2013, p. 16; see also Carlson 2010 and Shakespeare 2006, 2013). Brazilian mental health professionals and Brazilian parent activists also have ideas about autism that do not fall easily into dichotomies such as impairment/ disability and medical/social model of disability. In fact, the controversies between the political movement about autism in Brazil (led by parents of autistic people), and mental health professionals, complicate these dichotomies even further. These professionals equate disability to impairment, and reject the category altogether. The Portuguese word for disability, deficieˆncia (literally translated as ‘‘deficiency’’), definitely contributes to such rejection. Professionals also reject autism as an identity marker, because for them identities based on psychiatric diagnoses have traditionally been associated with stigma. Instead, they often use the category ‘‘people with severe mental suffering’’ to refer to a broader group of mental health service users which include not only people with autism, but also people with schizophrenia and people with substance abuse disorders, among others. Most of these professionals have been heavily influenced by another important political movement, the Psychiatric Reform, which represented a critique of a model of psychiatry centered in institutionalization and social exclusion. The Psychiatric Reform led to the development of a mental health policy focused on social inclusion and on furthering autonomy and self-determination among people with mental disorders. Interestingly, although these professionals include psychologists and psychiatrists, they do not adhere to an illness model focused on rehabilitation or cure. Instead, their approach follows closely the principles of the social model of disability, to the extent that it shifts the focus from the individual impairment to the social environment and the negative interactions that lead to social exclusion and institutionalization. Yet, they are largely unaware of the field of disability studies, which is still rather unknown in Brazil outside some small circles of disability activism. Parent activists, on the other hand, insist on adopting an identity-based model of disability to further their children’s access to treatment and social inclusion. Although they make neurobiological claims about autism, their main focus is not cure. Although they make neurobiological claims about autism, their main focus is not cure, nor the defense of autism as a lifestyle. Their antagonism toward the mental health sector has certainly turned an important part of their activism into demands for early intervention and specialized treatment, but they also fight the social exclusion and stigma associated with autism. In the following discussion, we

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show that the antagonism between the mental health network and parent activists is deeply embedded into the local and historical context and cannot be understood according to the classic polarized perspective on the social and medical model of disability, or the impairment/disability dichotomy.

Methods The ideas presented in this article combine ethnographic data collected over a period of two years from bibliographic and document research as well as participant observation in public hearings, lectures, and seminars offered by both parent associations and mental health professionals. As far as the bibliographic and document research is concerned, we avoided extensive reference to books about autism that merely reviewed foreign sources. Instead we privileged official documents and publications that address the Brazilian context and discuss public policies for autism, disability, and mental disorders. We chose to focus on documents and key stakeholders that express ideas and opinions representative of the social actors depicted here. For the same reason, the notions of ‘‘autism-as-mentalsuffering’’ and ‘‘autism-as-disability’’ are also discussed as native categories, not as models clearly articulated by social actors to account for autism in Brazil. Another important part of the ethnographic work was conducted through participant observation in a variety of events. We privileged those events that had a political focus because our main goal was to track the debate about autism involving political activism and the development and implementation of public policies. Among the many events we observed there are two public hearings at the Legislative Assembly of Rio de Janeiro; a meeting organized by parents of autistic children to form an advocacy group; a number of seminars and conferences that addressed public policies and public services related not only to autism but mental disorders and disability in general; and meetings of a large forum for professionals from the mental health network organized by the State Secretary of Health of Rio de Janeiro. During these events, in addition to attending lectures, roundtables, and other discussion forums, we had the opportunity to talk with several professionals and parents of children with autism. Some of them are key stakeholders in this contention around public policies and services for autism, and therefore are addressed by their names in this article. Finally, we have been monitoring online social network discussions and actions of a number of groups and stakeholders involved in this debate. This material is part of a larger ethnographic project conducted by these two authors that also involves extended participant observation in three institutions: a parent association that acts as a service provider for children with autism in a lowincome area of Rio de Janeiro; a Centro de Atenc¸a˜o Psicossocial Infanto-juvenil (Center for Psychosocial Attention for Children and Youth—CAPSis); and a public institution specializing in projects of social inclusion for people with disabilities. The last two entities are located in the center of a large industrial city in the state of Rio de Janeiro. The interviews and observations made in these institutional settings provided insights for the discussion developed in this article, but were not included as an explicit source of data.

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Autism as mental suffering: pathology in a social context Before we advance this argument, it is necessary to look at the role of social ´ nico de movements and political activism in the implementation of the Sistema U Sau´de (Brazilian Unified Health System—SUS). The creation of SUS was part of a larger movement known as the Health (or Sanitary) Reform that took place in the 1980s with the decline of Brazilian military regime. The Health Reform resulted from the activism of many different social actors that associated the demand for health care services with political demands for a democratic regime. The adoption of the 1988 Constitution consolidated such demands by defining health as a right of all Brazilian citizens and a duty of the state.4 This move imposed radical changes on ´ nico de Sau´de (Brazilian Unified Health System— the health sector, and Sistema U SUS) was created two years later with the goal of providing universal health coverage for all Brazilian citizens. Its implementation has been a slow and ongoing process, and in spite of some advances, SUS has faced major challenges related to funding, coordination of services and governmental instances, and the prevailing biomedical model of health practice (Lobato and Burlandy 2000). In regards to this last issue, it is important to note that given its political underpinnings, the Health Reform also put forward a quite progressive notion of health, one that entails attending to human needs in a broader sense. In practice, the curative, individual, and hospital-centered model of health care has proved difficult to overcome (Lobato and Burlandy 2000). Yet a tension between a purely biomedical model and one that takes into account the social and political aspects of the health-disease process has marked the history of SUS (Carvalho et al. 2007). The political activism related to guaranteeing universal right to health care has shaped many of the country’s discourses and practices of citizenship since the 1990s (Biehl 2005) and had an impact on the way the health networks were structured. That was particularly the case with the Rede de Atenc¸a˜o Psicossocial (Network for Psychosocial Attention—RAP). RAP is a well-established network of public services that resulted from a long and complex transformation in the mental health sector, known as the Brazilian Psychiatric Reform. This widespread movement started in the 1970s, but gained force and visibility during the 1980s with the process of re-democratizing the country. Although mostly led by mental health workers, this movement also included some participation from psychiatric patients and their family members (Amarante 1995, 2007; Goulart 2007). The Brazilian Psychiatric Reform was heavily inspired by the Italian model, which had Franco Basaglia as one of its leading figures. Putting forward a deeply political idea of deinstitutionalization, the movement campaigned for the replacement of psychiatric institutions with community-based treatments involving the family. The social reintegration of former patients of psychiatric institutions should take into account the socioeconomic roots of their condition, and aim at turning them into full citizens. Instead of denying the existence of mental illness, they intended to 4

According to Article 196 of Brazilian Constitution, ‘‘Health is a right of every individual and duty of the state, guaranteed by social and economic policies that seek to reduce the risk of disease and other injuries, and by universal and equal access to services designed to promote, protect, and recover health’’ (Brasil 1988).

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demedicalize and destigmatize the concept of madness (Goulart 2007). According to Biehl, ‘‘a new mental health concept was in the making: debiologize pathology and sociologize suffering’’ (2005, p. 133, emphasis in the original). In order to avoid a medical concept of illness and health, mental health professionals came up with the concept of ‘‘citizens burdened by mental suffering’’ (Biehl 2005, p. 133). Due to its deep commitment to human rights, the psychiatry Basaglia proposed privileged the socially situated experience of suffering, rather than diagnostic and therapeutic specificity. The real target of the Italian (and Brazilian) Psychiatric Reform was not mental illness, but the asylum and its harmful effects on patients. Mental health professionals have used the term ‘‘mental suffering’’ to describe the subjective dimension of this experience, and did not exclude social and economic conditions as possible causes or aggravators for such suffering. This concept became central not only in the field of public mental health, but also in Brazilian public health system as a whole. It has the double advantage of being all-inclusive, incorporating all people that identify themselves as experiencing mental suffering, and of not privileging one diagnostic condition over the others. As we shall see, that turned out to be a major issue for parent activist associations, who focused a good part of their political demands on guaranteeing specialized treatment for their children at SUS. At the beginning of the Psychiatric Reform though, autism was not a specific concern in the mental health agenda, and parent associations were not fully organized as political forces yet. In the early 2000s, new public policies were developed to incorporate populations historically excluded from the scope of the Psychiatric Reform movement, namely children and adolescents, and alcohol and drug addicts (Brasil 2002; Teno´rio 2007). Autism first became a concern in the mental health agenda once it was included in public policies directed at children and adolescents (Couto 2004; Couto et al. 2008; Rizzini 2008). In 2002, the Centros de Atenc¸a˜o Psicossocial Infanto-juvenil (Centers for Psychosocial Attention for Children and Youth—CAPSis) were created to assist children and adolescents suffering from persistent and severe mental disorders. Although CAPSis are part of a larger network, Rede de Atenc¸a˜o Psicossocial (Network for Psychosocial Attention—RAP), they became the main reference of mental health services for this specific population.5 However, as far as public policies in mental health were concerned, children with autism became part of a loosely defined group of abnormal and deviant children and adolescents (Couto 2004; Rizzini 2008). In a talk given at the Third National Conference of Mental Health in 2001,6 Maria Cristina Ventura Couto, a 5

According to the legislation that created the CAPSis, they are defined as territory based services for psychosocial attention of children and adolescents. Each CAPSi is designed to serve a population of 200,000 inhabitants and has a multidisciplinary team consisting of 1 physician (psychiatrist, neurologist or pediatrician with training in mental health), 1 nurse, 4 health professionals (psychologist, social worker, nurse, occupational therapist, speech therapist, teacher or other related professionals), and 5 technicians (nursing assistant, administrative technician, or craftsman). The assistance provided by CAPSis includes individual and group activities, family care, and development of inter-sectoral actions, especially with the areas of social services, education, and justice (Brasil 2002). In practice, not all of these services are available due to a number of difficulties related to funding and administrative challenges.

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The talk was later written as an article (Couto 2004). Couto was a key stakeholder in the development of public policies directed at children with autism. In this section we quote extensively from this article,

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psychoanalyst who played a major role in developing the policies that regulated the creation of CAPSis, reports on a research conducted in the state of Rio de Janeiro to identify and evaluate the available services for children and adolescents in the public health system at that time. The children described by Couto in her talk were, for the most part, poor and socially abandoned, left at ‘‘shelters for the disabled’’7 (Couto 2004, p. 2; also Biehl 2005; Rizzini 2004). Their social destiny, once they became adults, was often in psychiatric hospitals. Alternatively, those who were not abandoned by their families could be found at philanthropic institutions for intellectually disabled children.8 Two major philanthropic associations formed a widespread network of pedagogical services throughout the country: the Associac¸a˜o de Pais e Amigos dos Excepcionais (Association of Parents and Friends of the Exceptional—APAE) and the Pestalozzi Association9 (Lanna Jr. 2010). Her depiction of potential users of the CAPSis’ services brought together a diverse group that included children with intellectual disabilities and those perceived simply as crianc¸as loucas (mad children) under the broad category of ‘‘socially marginalized subjects.’’ In the early 2000s, the Rede de Atenc¸a˜o Psicossocial (Network for Psychosocial Attention—RAP) did not offer effective alternatives to deinstitutionalize and assist these children. And, according to Couto (2004), since the pedagogical services available in the philanthropic network adopted a developmental approach, they understood these children to be in a position of deficit with respect to an idealized norm. Still according to this perspective, endorsed by Couto and many mental health professionals from RAP, offering mental health treatment based on diagnostic classifications means both denying the singularity of each child and reinforcing their social exclusion. Following this rationale, the public policies developed to assist children and youth at RAP favored a broad and abstract definition of social Footnote 6 continued but the ideas presented are informed by direct conversations with her, and by lectures she gave on this topic at different occasions. She was also one of the main organizers of the first National Conference of CAPSi mentioned in the beginning of this article. 7

In fact, these shelters are philanthropic institutions, supported mostly by donations from civil society and/or state funding. The inspection of services and oversight of accounts are virtually nonexistent. These institutions should act as provisional shelters for a specific population (children and adolescents with disabilities in situations of abandonment), but in practice they act as total institutions: they are, in fact, permanent asylums for a mixed population of children, adolescents and adults—with and without disabilities (Couto 2004; 2008; Rizzini 2008; Rizzini and Almeida 2011). According to Couto, ‘‘in general, this system has the entrance door, but no exit door’’ (2008, p. 9). This is the same kind of institution described by Joa˜o Biehl in his book ‘‘Vita—Life in a Zone of Abandonment’’ (2005).

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The official terminology about disability adopted in Brazil follows the person-first language (pessoa com deficieˆncia). This lexicon has been modified throughout the years, but some terms such as ‘deficiente’ (disabled) or ‘pessoa deficiente’ (disabled person) can still be found in literature. In this paper we use both terminologies, with a preference for person-first language. However, when quoting older terminology, we keep the term used by the author.

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These associations, founded during the first half of the twentieth century, are still, for the most part, the only service providers available for the vast majority of lower-income children with disability in many parts of the country. Since the 1990s this scenario has been changing, with the creation of a growing number of parent associations that act as service providers for children with autism exclusively (Mello et al. 2013).

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exclusion10 with no focus on the specific kinds of marginalization faced by children with autism and their parents. In a recent public hearing organized by the Assembleia Legislativa do Rio de Janeiro (Legislative Assembly of Rio de Janeiro—ALERJ) to discuss the treatment of children with autism in CAPSis, mental health professionals from RAP voiced the same kind of arguments: This service (CAPSi) welcomes all … and not by prioritizing a given diagnosis. We do not welcome a child into treatment based on a diagnosis. We base our work on the degree of mental suffering of this child … on the degree of mental suffering of the family mainly … and the difficulties that this family faces in including their child so that she can be a part of social life just like everyone else. I am personally totally against a center with specialized treatment for autism. Because I believe that a specialized center is the direct opposite of social inclusion. … In the cases we have at the CAPSi, many times you only have autism. But other times you have autism and other issues. Then, the more you specialize, the more you exclude the child and the family. (Public hearing at ALERJ, 2014). A certain perception of disability is deployed in this discourse. For these mental health professionals in the RAP, because treating these children based on a psychiatric diagnosis means denying their condition as singular subjects in complex social contexts, addressing autism as a disability only reinforces social exclusion. According to these professionals, limiting their understanding of the child to her diagnosis is also reducing her to a position of deficit, where she is evaluated solely in relation to a developmental ideal that she might never reach. We noted a similar suspicion toward using autism, a psychiatric diagnosis, as the defining characteristic of the public served by the Centros de Atenc¸a˜o Psicossocial Infanto-juvenil (Centers for Psychosocial Attention for Children and Youth— CAPSis), in some informal conversations with other professionals from the mental health network. A common concern was the risk of treating as autistic those children who showed symptoms of autism due to life circumstances other than an individualized organic problem. These children might live in conditions of severe stress, due to social and economic hardships and violent domestic environments that could be playing a major role in the development of such symptoms. The concern with these ‘‘false positives’’ was part of a larger criticism of the medicalization of childhood, and these professionals worried about describing and treating nonmedical problems as medical problems (Conrad 2007). Many mental health professionals from RAP fear that this process might lead to misdiagnoses and overdiagnoses.11 As we will show in the next section, parents on the other hand are 10

Among the socially excluded experiencing mental suffering, the Centros de Atenc¸a˜o Psicossocial Infanto-juvenil (Centers for Psychosocial Attention for children and youth—CAPSis) also welcomes adolescents with a history of alcohol and substance abuse, those suffering domestic violence or living in the streets, and other kinds of suffering related to their social and economic condition.

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This concern is not restricted to autism. Professionals from the field of mental health and education have been debating the process of medicalization in Brazil regarding other childhood disorders, especially ADHD. Their concerns are not unfounded. For example, a recent survey showed that consume of Ritalin in Brazil has grown 775 % in the last 10 years (Barros 2014).

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mostly worried about ‘‘false negatives’’—in other words, that autism is not being properly diagnosed and treated due to lack of expertise and information. The rejection of a diagnostic-based approach to treatment reflects the main philosophy of the Psychiatric Reform and the ideas of Franco Basaglia, but it is also consonant with a psychoanalytic approach. According to Russo, it is impossible to discuss the Brazilian Psychiatric Reform without taking into account the influence of psychoanalysis in the field of psychiatry in Brazil, because ‘‘in most cases psychoanalysts were responsible for the introduction of progressive reforms within psychiatric institutions’’ (1997, p. 18). Due to their participation in the Brazilian Psychiatric Reform, psychoanalysts still hold key positions in the Network for Psychosocial Attention and in the supervision of the therapeutic work conducted by CAPSis (Russo 1997), but it would be inaccurate to affirm that CAPSis openly adopt a psychoanalytic approach. The incorporation of psychoanalysis in the process of Psychiatric Reform might seem odd at first, since Franco Basaglia was not very keen on psychoanalysis. Like Basaglia, psychoanalysts also reject a model of treatment based on specific diagnoses, but their clinical efforts are mostly focused on the singularity and idiosyncrasies of each child, understood in the context of their psychic structure and their particular life history. Nevertheless, very much like the Argentinian psychoanalysts Lakoff described, Brazilian psychoanalysts adapted their practice to a public service setting, incorporated ‘‘the role of social and political conditions in the development of illness (…) to their reflection,’’ and ‘‘began to envision psychoanalysis as a possible tool for social change’’ (Lakoff 2005, p. 75). Because discourses and practices of citizenship took primacy over the adoption of any specific therapeutic approach in the creation of CAPSis, psychoanalysts were able to consolidate their hegemony in the therapeutic practices of CAPSis of important Brazilian states without much resistance. While parent associations lobbied intensely for specialized treatment, a debate about whether CAPSis should offer psychoanalytic treatment ensued. In 2012, a number of psychoanalytic associations, NGOs, and university professors throughout the country got together to form the ‘‘Psychoanalysis, Autism and Public Health Movement.’’ In their manifesto, which is presented as a letter of principles, they reclaim the right to be at least one of the treatment alternatives at CAPSis. According to the manifesto, the aim of the movement is ‘‘to promote and affirm the place of psychoanalytic practices and their ethical position vis-a`-vis the current public policies concerning the treatment of people with autism and their families’’ (Manifesto 2013). Stressing the ‘‘complexity’’ of autism spectrum disorders, the document calls attention to the dangers of ‘‘dogmatic reductionism’’ in the mental health sector, which causes the ‘‘complexity of mental suffering’’ to be ignored in favor of hegemonic therapeutic approaches (Manifesto 2013). Overall, psychoanalysts have an ambiguous attitude toward autism in the context of the public mental health network. On the one hand, in spite of their general theories about the human psyche, they recognize autism as a diagnostic entity, characterize it in terms of an affective-relational disorder (Block and Cavalvante 2014; Lima 2014), and adopt a general approach to deal with it that is defended in this manifesto. On the other hand, they refuse to consider their psychoanalytic expertise as specialized

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because that approach is not specific to a given diagnosis, but instead is designed to deal with the individual sufferer and the singularities of each case. Nevertheless, parent associations question the efficacy of psychoanalytic treatment for autism. In their demands for specialized treatment, they stress the importance of the adoption of ‘‘evidence-based approaches’’ to autism at SUS. As of the early 2000s, parent associations became important social actors and as a consequence the political debate over autism at SUS has gained new contours. From mental suffering to disability The approval of the Federal Law 12.764 in December of 2012, defining autism as a ‘‘disability for all legal purposes’’ was more than a change in the legal status of people with autism in Brazil. It marked a different way of conceiving autism, developed over a long period of time parallel to the debates that led to the creation of the CAPSis. In fact, the political movement that led to the approval of the law has shaped the notion of autism-as-disability in stark opposition to the conception of autism-as-mental-suffering. Although there are certainly individual and group differences as far as parent activism is concerned, they have acted as a fairly homogeneous group during the period that preceded the approval of the law. We will then treat them as such in this discussion, pointing out differences and divergences when they exist. Such political movement started in the 1980s, with the creation of the first association founded and operated by parents of children with autism, the Associac¸a˜o de Amigos do Autista (Association of Friends of Autistics—AMA) in Sa˜o Paulo.12 AMA-Sa˜o Paulo was initially run entirely by parents and acted as a service provider in a period when there was previously no specialized treatment available for children with autism in Brazil. According to Block and Cavalcante, the AMA imported and adapted knowledge—models of educational and vocational rehabilitation—from the principal centers of autism treatment in the United States and Europe. They sought to structure the environment and tasks of daily living, enhancing independence, methods of communication, and strategies of inclusion in sports and leisure. (2012) Through the 1990s this model of association proliferated across the country, creating local chapters of the original AMA. Yet, the AMA-Sa˜o Paulo is still the largest and best structured in the country. The first national level association focused exclusively on lobbying and awareness-raising, the Associac¸a˜o Brasileira de Autismo (Brazilian Association of Autism—ABRA), was created in 1988, bringing together representatives from AMAs of different parts of the country. It was only in early 2000s that other advocacy associations were created, acting at the local and/or national level.13 In the 12

Since Sa˜o Paulo is the largest city in Brazil, the importance and significance of this association has been enormous. 13

To name a few—Associac¸a˜o Brasileira para Ac¸a˜o por Direitos das Pessoas com Autismo (Brazilian Association for Action for the Rights of People with Autism—ABRAC ¸ A), Movimento Orgulho Autista (Autistic Pride Movement—MOAB), Associac¸a˜o em Defesa de Autismo (Association in Defense of

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last five years, political activism was leveraged by parents’ increasing participation in online communities.14 Thus, although the first parent associations were created with the sole goal of providing services, they set up the organizational basis for other advocacy-focused associations to emerge (Nunes 2014). Contrary to the arguments of mental health professionals based on the ideals of the Psychiatric Reform, the focus on a psychiatric diagnosis has worked toward the social inclusion of a historically excluded population, and not the opposite. Yet, as parent associations try to turn their political demands into public policies, they have been faced with the challenge of defining this specific population, and how social inclusion is supposed to happen for them. In other words, parents’ political mobilization to guarantee their children’s right to health and education also puts forward a certain idea of what autism is and what kinds of assistance the state should offer for this population. Following the international trend, they have favored neurobiological accounts of autism15 and the adoption of behavioral therapies.16 But rather than solving the problem, it raises yet other controversies. The first issue relates to the diagnostic process. In spite of the large literature describing autism in neurobiological terms, the diagnosis is still clinical (Walsh et al. 2011). In Brazil, as in many parts of the world, the lack of public and professional awareness, and specialized human resources capable of detecting early signs of autism pose great challenges for the diagnostic process (Paula et al. 2011a, b; Elsabbagh et al. 2012). During our fieldwork, we often heard parent activists in public events sharing stories about their long journey in search of a diagnosis. According to them, before they reached a diagnosis for their children, many health professionals, from pediatricians to psychologists, questioned their perceptions about their own child, suggesting that they were exaggerating and that every child is different. For these parents, autism is largely underdiagnosed in Brazil and their personal stories attest to the lack of awareness and expertise to deal with this public health issue. In this context, describing autism as a neurobiological disorder contributes to the perception of autism as an objective entity, existing outside its Footnote 13 continued Autism—ADEFA), Associac¸a˜o de Pais de Autistas e Deficientes Mentais (Autistic and Mentally Disabled Parent Association—APADEM) and Mundo Azul (Blue World). While these associations differ in size and scope of their activities, they are all similar in regards to their main goals—advocate for the rights of people with autism and their families, lobbying for the approval of laws at the municipal, state and federal level and making sure that these laws are translated into programs and services to assist people with autism. 14 A number of online communities created and run by people with high-functioning autism are also emerging, but their political activism is still very limited. They act mostly as virtual support groups. 15 For example, according to an IP flyer produced by a parent advocacy group in Rio de Janeiro, ‘‘autism is a neurobiological disorder that interferes with the typical development of an individual, affecting each child in a unique way. But, since it is difficult to diagnose, it is common to mistake an autistic person for someone with a mental disorder.’’. 16 Parents’ political demands are not restricted to specialized treatment. Inclusive education is another major source of controversy. Parent activism has focused on guaranteeing specialized educational services for their children. Given the diversity of children in the autistic spectrum, there has been disagreement about whether that should happen in the regular school system or in special schools. Nevertheless, in this article we focus on the conflicts between parent advocacy movement and the mental health sector and will not deal with the controversies related to education.

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unique manifestation in a particular child (Rosenberg 2006; Verhoeff 2012), to be discovered and treated by health professionals. As already mentioned, many mental health professionals from RAP fear that focus on autism as an objective entity might contribute to a larger process of medicalization of childhood. The second issue relates mainly to treatment. A major complaint among parents against the CAPSis is that their children with autism are exposed to other potentially violent users of this service, namely people with schizophrenia and people with substance abuse disorder. They also complain about the kind of therapeutic treatment offered by CAPSis, which, according to many parents, amounts to distributing medication and/or simply letting the child do whatever they want (Nunes 2014). Most parent activists have been adamant in their demands for specialized treatment in specialized centers.17 Institutions that offer services for people with autism in Brazil use a number of different autism therapies. According to a survey conducted by Associac¸a˜o Brasileira de Autismo (Brazilian Association of Autism—ABRA) among various kinds of institution (public and private), the most widely used method in Brazil is TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children), as that was the method originally adopted by AMA in Sa˜o Paulo and other parts of the country, followed by PECS (Picture Exchange Communication System) and ABA (Applied Behavior Analysis) (Mello et al. 2013). But when it comes to political activism parents are not very specific in regards to treatment, preferring to simply stress the importance of adopting ‘‘evidence-based methodologies’’.18 According to Mello and colleagues, the scientific method should determine what counts as ‘‘evidence.’’ Yet, in a clear reference to psychoanalytic research methods, the authors criticize many service providers for using individual case studies to justify the adoption of a given methodology (Mello et al. 2013). In that sense, rather than expressing a consensus regarding what specific methodologies should be adopted at SUS, the evidence-based rhetoric has been used to criticize and debunk psychoanalytical approaches. Destabilizing old dichotomies In a talk given at the opening session of the above-mentioned National Conference of CAPSis, Benilton Bezerra Ju´nior—a well-known psychoanalyst and key figure in the Brazilian Psychiatric Reform—argued that, as far as autism is concerned, there were actually similarities between the ethical and political goals of their work and those professed by the disability rights movement. Bezerra Ju´nior is acquainted with the disability studies literature and wanted to call their attention to more positive 17

Services and human resources are still too scarce to provide specialized treatment for all people with autism throughout Brazil. Recently many parent associations were persuaded by this argument and decided to accept CAPSis as a possible service provider, as long as professionals working there receive proper ‘‘specialized training.’’ A great schism within the movement ensued, and a number of parents are accusing these associations of being ‘‘pro CAPSi’’ and ‘‘against people with autism.’’. 18 Following a similar trend, an important parent association just made available in their website a guideline on ‘‘Inclusive Education based on Scientific Evidence.’’ (Comunidade Aprender Crianc¸a 2014. See: http://autismoerealidade.org/noticias/cartilha-da-inclusao-escolar/ Accessed: September, 2014).

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meanings of the term than deficieˆncia (deficiency), the Portuguese term for disability. Many mental health professionals in the audience, especially psychoanalysts, reacted with disbelief. This literature is still largely unknown outside the field of disability, and for mental health professionals, this term was immediately associated with the old practices and discourses that kept people with autism at the margins of social life before the Psychiatric Reform. This episode also hints at the difficulty of adopting a polarized perspective on the social and medical model of disability in the context of Brazilian public health system as far as autism is concerned. Bezerra Ju´nior is right to say that there are ethical and political similarities that bring both parent activists and mental health workers close to a social model of disability, but there are also important differences that cannot be understood according to such a polarized perspective. A second related issue refers to the different strategies used to achieve the similar ethical and political goals Bezerra Ju´nior delineated. In this case, it is important to examine the political possibilities afforded by the parent activist movement, a political movement based on a disability identity, and by the Psychiatric Reform, a political movement that rejects diagnostic-based identities as a strategy for political change. In regards to the first issue, mental health professionals reject the term ‘‘disability’’ altogether because they associate it with a medicalized model of disability. In fact, they reject the very possibility of using a disability- or diagnosisbased identity to achieve these ethical and political goals. As far as parent activists are concerned, it would be inaccurate to assume that parent advocacy groups adhere to a medical model of disability simply because they focus on their children’s impairments to demand specialized treatment. Above all, their political movement encapsulates demands for recognition of the long-neglected population of people with autism in Brazil. As such, their movement shares important similarities with the disability rights movement and the increased sensitivity about identity that characterizes it. Their demands for recognition also express parents’ generalized perception that in spite of their best hopes in the positive effects of early screening and intervention, their children might never be cured and will face several challenges throughout their lives. Many parent activists already face the challenge of parenting an autistic adolescent or adult and worry about what will happen when they can no longer care for their child (Nunes 2014). For them autism is a chronic condition that needs to be handled not just through specialized treatment, but with the support of all the social benefits guaranteed for people with disability in Brazilian welfare state. The federal law that defined autism as a disability was approved with the support of members of the disability movement (Nogueira 2012, 2013). In that regard, the alliance with the disability rights movement in Brazil proved to be advantageous in two ways. First, the movement has been steadily growing in size and political influence since the 1980s, but in 2008 its visibility and importance was leveraged by the ratification of the 2006 UN Convention on the Rights of Persons with Disabilities as an amendment to the Brazilian Constitution (Lanna Jr. 2010). Second, it put parent activists in touch with a larger and stronger political movement that has been attuned with the social model of disability for a longer period of time. One parent association in particular, Associac¸a˜o Brasileira para Ac¸a˜o por Direitos

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das Pessoas com Autismo (Brazilian Association for Action for the Rights of People with Autism—ABRAC¸A), has openly embraced the perspective of the disability movement, advocating for ‘‘public policies that do not violate human rights and favor the inclusion of people with autism’’ (ABRAC ¸ A 2014). Inspired by a wellknown slogan of the disability activism—‘‘Nothing about us without us’’—they recently launched a campaign on the Internet to encourage people with autism to advocate for themselves: ‘‘I am autistic, I have my own voice’’ (Sou autista, tenho minha voz). In spite of such initiatives, disability activists have questioned parent associations for speaking on behalf of their children (Nunes 2014). While self-advocacy is certainly a way of empowering oppressed subjects, it implies an independent and self-sufficient subject capable of speaking on his or her own behalf (Kittay 2001; Kittay and Carlson 2010). The specific case of autism poses a number of challenges to this imperative because a significant portion of those who are being advocated for are children, not independent adults, and not all people who fall under the autism spectrum are capable of speaking for themselves. Despite initial criticisms, Brazilian parent activists have been able to get past these challenges by framing their demands around a generalized discourse of citizenship. In spite of their great emphasis on demands for specialized treatment, the legal recognition of autism as a disability and the alliance with the disability rights movement in Brazil also granted them rights in important areas such as education and social security. On the other hand, mental health professionals who work at CAPSis and adhere to the ideals of the Psychiatric Reform expect children with autism and their families to enact their identity as citizens without embracing a shared identity around autism. In fact, Brazilian mental health policy is essentially based on the Caracas Declaration (Mateus et al. 2008; WHO-AIMS 2007) and as such it places a great emphasis on guaranteeing civil rights for people with mental disorders. In reality, discourses and practices around individual rights have mostly translated into denouncing human rights violations by mental health facilities and shelters such as those described by Couto (2004).19 Human rights violations have been a central concern for Brazilian mental health professionals since the beginning of the political movement that led to the Psychiatric Reform.20 Overall, the Psychiatric Reform represented a major shift in the legal status of people with psychiatric disorders. The Federal Law that regulated the Reform in 2001 set limits to involuntary admissions and established a number of basic rights to further autonomy and self-determination among people with mental disorders (Brasil 2001). But the movement failed to engage these people and their families in the social and political participation envisioned by the Reform. In spite of a quite 19

A number of cases of human rights violation came into public in early 2000 s. One of them involved the death of a person with autism in a specialized clinic in Minas Gerais, in 2003 (Croˆnica Autista, N.d.). 20 The Brazilian Psychiatric Reform was possible due to another political movement that took place during the re-democratization period in Brazil, the so-called Anti-asylum Movement (Movimento Antimanicomial). Composed of mental health professionals, intellectuals and left-wing militants, and also patients and their families, this movement represented both a critique of psychiatric institutionalization in general and more specifically of the psychiatric establishment’s collaboration with military dictatorship. (Amarante 1995).

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progressive political discourse on the importance of the ‘‘agency of service users’’ (literally, protagonismo dos usua´rios21), the social and political participation of service users and their families has been limited to isolated initiatives. In the specific case of autism and users of CAPSis, we were unable to find any parent association politically organized and articulated to defend treatment for autism at CAPSis.

Conclusion In this article, we argued that the recent controversies around autism in Brazil need to be examined within the context of a larger debate on the relationship between health, rights, and citizenship. We used insights from the field of disability studies to think through the social and political underpinnings of defining autism as a form of mental suffering or as a disability in this specific sociocultural context. We have shown that while parent activists express a great concern about early intervention and specialized evidence-based treatment for their children, their perspective cannot be easily reduced to the medical model of disability. Brazilian sociocultural context and its specific historical developments have contributed to shape their perspective and to complicate the boundaries between a medical and social model of disability in this case. First, because parents’ demands for specialized treatment represent a response to the historical gap that led children with autism to be left at shelters and/or institutionalized as psychiatric patients. But contrary to mental health professionals, they do not recognize the Psychiatric Reform, or the Centros de Atenc¸a˜o Psicossocial Infanto-Juvenil (Centers for Psychosocial Attention for Children and Youth—CAPSi), as an effective response to this problem. Secondly, these parents managed to bring the discussion about autism into the field of disability in Brazil right when the social and political rights of people with disabilities are most debated. While that certainly represented a political maneuver to gain visibility and support to their cause, it also exposed them to rather progressive ideas from the field of disability activism such as neurodiversity. Thus, autism-as-disability cannot be simply reduced to a medicalized and biologized way of conceiving autism, but instead becomes a catalyst to struggles for recognition, rights, and justice. We also examined the strategies these different social actors use to mobilize political action. Brazilian parent activists organize their political movement based on a disability identity. Although it might be difficult to reify such identity simply as an individual and biologically determined impairment, asserting autism as a somehow self-evident diagnostic entity has given enough cohesion to this group of parents to act as a strong political force. Such identity can eventually be re-signified and turned positive, as the neurodiversity movement demonstrates, and Brazilian parent activists seem to welcome this possibility. On the other hand, mental health professionals aligned with the Psychiatric Reform reject diagnostic- or disability21

Protagonismo dos usua´rios is an expression used by professionals identified with the Psychiatric Reform to designate the role that users of mental health services and their families should play in designing their therapeutic process and the public policies in mental health in general. In other words, the ‘‘agency of service users’’ reflects the development of their autonomy and self-determination as citizens.

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based identities by evoking a more diffuse and generalized identity, that of a ‘‘citizen burdened by mental suffering’’ (Biehl 2005, p. 133). In practice the most important political discourses and actions mobilized by this concept are related to human rights violations in psychiatric hospitals and shelters. Although some important advances were made in that area, the concept of mental suffering fell short of mobilizing a strong and coordinated group to extend their scope of political action beyond that.

References ABRAC ¸A 2014 Sou Autista, Tenho Minha Voz. (Manifesto). http://abraca.autismobrasil.org/sou-autista-tenho-aminha-voz/, accessed: September 2014. Amarante, Paulo 2007 Sau´de Mental e Atenc¸a˜o Psicossocial. Rio de Janeiro: Ed. Fiocruz. Amarante, Paulo, ed. 1995 Loucos Pela VidaA Trajeto´ria da Reforma Psiquia´trica no Brasil. Rio de Janeiro: SDE/ENSP. Anastasiou, Dimitris, and James Kauffman 2013 The Social Model of Disability: Dichotomy between Impairment and Disability. Journal of Medicine and Philosophy 38: 441–459. Barros, Denise B. 2014 Os usos e sentidos do metilfenidato: entre o tratamento e o aprimoramento. Tese (Doutorado em Sau´de Coletiva). Rio de Janeiro: Universidade do Estado do Rio Janeiro. Biehl, Joa˜o 2005 Vita: Life in a Zone of Social Abandonment. Berkley: University of California Press. Block, Pamela, and Fa´tima Cavalcante 2012 Autism in Brazil from Advocacy and Self-advocacy Perspectives: A Preliminary Research Report. http://www.autismaroundtheglobe.org/countries/Brazil.asp, accessed July 2014. 2014 Historical Perceptions of Autism in Brazil: Professional Treatment, Family Advocacy, and Autistic Pride, 1943–2010. In Disability Histories. Susan Burch and Michael Rembis, eds., pp. 77–97. Chicago: University of Illinois Press. Brasil 1988 Constituic¸a˜o da Repu´blica Federativa do Brasil. Brası´lia: Dia´rio Oficial da Unia˜o, 5 de outubro de 1998. 2001 Lei n8 10.216, de 6 de abril de 2001—Dispo˜e sobre a protec¸a˜o e os direitos das pessoas portadoras de transtornos mentais e redireciona o modelo assistencial em sau´de mental. Brası´lia: Dia´rio Oficial da Unia˜o, 06 de abril de 2001. 2002 Portaria GM n8 336, de 19 de fevereiro de 2002Estabelece as modalidades CAPS I, II E III. Brası´lia: Ministe´rio da Sau´de. 2012 Lei n8 12.764, de 27 de dezembro de 2012Institui a polı´tica nacional de protec¸a˜o dos direitos da pessoa com transtorno do espectro autista e altera o §38 do art. 98 da Lei n8 8.112, de 11 de dezembro de 1990. Brası´lia: Dia´rio Oficial da Unia˜o, 27 de dezembro de 2012. Campbell, Fiona K. 2009 Contours of Ableism: the Production of Disability and Abledness. Palgrave Macmillan, 2009. Carlson, Licia 2010 The Faces of Intellectual Disability: Philosophical Reflections. Bloomington: Indiana University Press. Carvalho, Antoˆnio Ivo, Marcia Faria Westphal, and Vera Lucia G.P. Lima 2007 Health Promotion in Brazil. Promotion & Education 14(7):7–12. Comunidade Aprender Crianc¸a. 2014 Cartilha da Inclusa˜o Escolar: inclusa˜o baseada em evideˆncias cientı´ficas. Ribeira˜o Preto: Ed. Instituto Glia.

123

Cult Med Psychiatry Conrad, Peter 2007 The Medicalization of Society: on the Transformation of Human Conditions into Treatable Disorders. Baltimore: the John Hopkins University Press. Couto, Maria Cristina Ventura 2004 Por uma polı´tica Pu´blica de Sau´de Mental para Crianc¸as e Adolescentes. In A Crianc¸a e a Sau´de Mentalenlaces entre a clı´nica e a polı´tica. Taˆnia Ferreira, org. Belo Horizonte: Auteˆntica/FHCFUMEC. Couto, Maria Cristina Ventura, Cristiane S. Duarte, and Pedro Gabriel G. Delgado 2008 A Sau´de Mental Infantil na Sau´de Pu´blica Brasileirasituac¸a˜o e desafios. Revista Brasileira de Psiquiatria 30(4):390–398. Croˆnica Autista N.d. Croˆnica Autista. Um apanhado do noticia´rio sobre autismo e autistas. http://www.cronicaautista. blogger.com.br/2003_10_01_archive.html. Accessed August 2014. Davis, Lennard 2013 The End of Identity Politics: on Disability as an Unstable Category. In The Disability Studies Reader. 4th Edition. Lennard J Davis, ed. New York: Routledge. Dawson, Michelle 2004 The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA Industry. Avaliable at http://www.sentex.net/*nexus23/naa_aba.html, accessed August 2014. Elsabbagh, Mayada, Gauri Divan, Yun-Joo Koh, Young Shin Kim, Shuaib Kauchali, Carlos Marcı´n, Cecilia Montiel-Nava, Vikram Patel, Cristiane S. Paula, Chongying Wang, Mohammad Taghi Yasamy, and Eric Fombonne 2012 Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Research 5:160–179 Eyal, Gil, Brendan Hart, Emine Onculer, Neta Oren, and Natasha Rossi 2010 The Autism Matrixthe Social Origins of the Autistim Epidemic. Cambridge: Polity Press. Fein, Elizabeth 2012 The Machine Within: an Ethnography of Asperger’s Syndrome, Biomedicine, and the Paradoxes of Identity and Technology in the Late Modern United States. Dissertation (Doctoral in Comparative Human Development). Chicago: University of Chicago. Friend, John M 2014 The Biopolitics of Policy-Making: Medical Activism in the Century of the Brain. New Political Science 36(1): 32–51. Ginsburg, Faye, and Rayna Rapp 2013 Disability Worlds. Annual Review of Anthropology 42(4.1–4.16): 15-33. Goulart, Maria Stella B. 2007 As Raı´zes Italianas do Movimento Antimanicomial. Sa˜o Paulo: Casa do Psico´logo. Hart, Brendan 2014 Autism Parents & NeurodiversityRadical Translation, Joint Embodiment and the Prosthetic Environment. BioSocieties 9(3): 284–303. Kittay, Eva Feder 2001 When Caring is Just and Justice is Caring: Justice and Mental Retardation. Public Culture 13(3): 557–579. Kittay, Eva Feder, and Licia Carlson, eds. 2010 Cognitive Disability and Its Challenge to Moral Philosophy. Oxford: Wiley-Blackwell. Lakoff, Andrew 2005 Pharmaceutical Reason: Knowledge and Value in Global Psychiatry. Cambridge: Cambridge University Press. Lanna Jr., Ma´rio Cle´ber Martins, comp. 2010 Histo´ria do Movimento Polı´tico das Pessoas com Deficieˆncia no Brasil. Brası´lia: Secretaria de Direitos Humanos/Secretaria Nacional de Promoc¸a˜o dos Direitos da Pessoa com Deficieˆncia. Lima, Rossano C 2014 A Construc¸a˜o Histo´rica do Autismo. Cieˆncias Humanas e Sociais em Revista 36(1): 109–123. Lobato, Lenaura, and Luciene Burlandy 2000 The Context and Process of Health Care Reform In Brazil. In Reshaping Health Care in Latin Americaa comparative analysis of health care reform in Argentina, Brazil and Mexico. Sandra Fleury, Susana Belmartino and Enis Baris. Ottawa: International Development Research Centre.

123

Cult Med Psychiatry Manifesto 2013 Manifesto do Movimento Psicana´lise, Autismo e Sau´de Pu´blica. http://www.sedes.org.br/site/ sites/default/files/manifesto_movimento_psicanalise_autismo_saudepublica.pdf, accessed August 2013. Mateus, Mario D., Jair J. Mari, Pedro Gabriel G. Delgado, Naomar Almeida- Filho, Thomas Barrett, Jeronimo Gerolin, Samuel Goihman, Denise Razzouk, Jorge Rodriguez, Renata Weber, Sergio B Andreoli, and Shekhar Saxena 2008 The mental health system in Brazil: Policies and future challenges. International Journal of Mental Health Systems 2(12) Mello, Ana Maria S. Ros de, Maria Ame´rica Andrade, Helena Chen Ho, and Ineˆs de Souza 2013 Retratos do Autismo no Brasil. Sa˜o Paulo: AMA. Nadesan, Majia Holmer 2005 Constructing Autism: Unravelling the ‘Truth’ and Understanding the Social. New York: Routledge. Nogueira, Geraldo 2012 Autismo: Conhecer e Agir. http://www.oabrj.org.br/artigo/2968-autismo-conhecer-e-agir— geraldo-nogueira, accessed August 2013. 2013 Autismo e DeficieˆnciaLei n8 12.764/2012. Reac¸a˜oRevista Nacional de Reabilitac¸a˜o 16(91): 25-26. Nunes, Fernanda Cristina Ferreira 2014 Autuac¸a˜o Polı´tica de Grupos de Pais de Autistas no Rio de Janeiroperspectivas para o campo da sau´de. Dissertac¸a˜o (mestrado em Sau´de Coletiva). Rio de Janeiro: Universidade do Estado do Rio Janeiro. Paula, Cristiane S, Eric Fombone, Carlos Gadia, Robert Tuchman, and Michael Rosanoff 2011 Autism in BrazilPerspectives from Science and Society. Revista da Associac¸a˜o Me´dica Brasileira 57(1): 2–5. Paula, Cristiane S, Sabrina H Ribeiro, Eric Fombone, and Marcos T Mercadante 2011 Brief Report: Prevalence of Pervasive Developmental Disorder in Brazila Pilot Study. Journal of Autism and Developmental Disorders 41: 1738–1742. Ortega, Francisco 2009 Deficieˆncia, Autismo e Neurodiversidade. Cieˆncia e Sau´de Coletiva 14: 67–77. Ortega, Francisco, and Suparna Choudhury 2011 ‘Wired up Differently’: Autism, Adolescence and the Politics of Neurological Identities. Subjectivity 4(3): 323–345. Rizzini, Irene, coord. 2008 Do Confinamento ao Acolhimento: institucionalizac¸a˜o de crianc¸as e adolescentes com deficieˆnciadesafios e caminhos. Relato´rio de Pesquisa. Rio de Janeiro: CIESPI. Rizzini, Irene, and Neli C Almeida 2011 A Institucionalizac¸a˜o de Crianc¸as e Adolescentes com Deficieˆncia: anotac¸o˜es para uma agenda de polı´tica pu´blica. Revista Sau´de & Direitos Humanos 7(7): 159–177. Rosenberg, Charles 2006 Contested boundaries. Psychiatry, disease, and diagnosis. Perspectives in Biology and Medicine 49(3): 407-424. Russo, Jane 1997 Os Treˆs Sujeitos da Psiquiatria. Cadernos do IPUB 8: 12–21. Shakespeare, Tom 2006 Disability Rights and Wrongs. New York: Routledge. Shakespeare, Tom 2013 The Social Model of Disability. In The Disability Studies Reader. 4th Edition. Lennard J Davis, ed. New York: Routledge. Siebers, Tobin 2013 Disability and the Theory of Complex Embodiment: for Identity Politics in a New Register. In The Disability Studies Reader. 4th Edition. Lennard J Davis, ed. New York: Routledge. Singer, Judy 1999 Why can’t you be normal for once in your life?’ From a ‘problem with no name’ to the emergence of a new category of difference. In: Corker M, French S, editors. Disability discourse. Buckingham: Open University Press; 1999. p. 59-67.

123

Cult Med Psychiatry Teno´rio, Fernando 2007 Questo˜es para uma Atualizac¸a˜o da Agenda da Reforma Psiquia´trica. In Sau´de Mental e Sau´de Pu´blicaquesto˜es para a agenda da Reforma Psiquia´trica. Maria Cristina Ventura Couto and Renata Gomes Martinez, orgs. Rio de Janeiro: NUPPSAM/IPUB/UFRJ. Verhoeff, Berend 2012 What is this thing called autism? A critical analysis of the tenacious search for autism’s essence. BioSocieties 7(4): 410–432 Walsh, Pat, Mayada Elsabbagh, Patrick Bolton, and Ilina Singh 2011 In Search of Biomarkers for Autism: Scientific, Social and Ethical Challenges. Nature Reviews Neuroscience 12: 603–612. Weintraub, Kit 2005 Letter to the NY Times from Kit Weintraub. The Schafer Autism Report. http://www.sarnet.org/ ltr/weintraub1-05.htm. Accessed August 2013. Wendell, Susan 2013 Unhealthy Disabled: Treating Chronic Illnesses as Disabilities. In The Disability Studies Reader. 4th Edition. Lennard J Davis, ed. New York: Routledge. WHO-AIMS 2007 Report on Mental Health System in Brazil, WHO and Ministry of Health, Brası´lia, Brazil.

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The changing face of autism in Brazil.

At the end of 2012, after intensive lobbying by parent activist associations, a federal law recognized autism as a "disability for all legal purposes"...
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