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 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
Public policies
Disability
Mental health

Identity politics

& Clarice Rios

clarice.r@gmail.com

Barbara Costa Andrada

barbarafcosta@hotmail.com
1
Institute for Social Medicine, State University of Rio de Janeiro, Rua São 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 Atenção
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 Atenção 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 à Pessoa com Deficiência (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 Único de Saúde (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 Único de Saúde (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 Atenção Psicossocial (Network
of Psychosocial Attention—RAP) interacts and should work in conjunction with other networks and
health care programs such as the Programa Saúde da Famı́lia (Family Health Program—PSF) and the
Rede de Cuidados à Pessoa com Deficiência (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

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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 São
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 ‘high-
functioning’ 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 interpre-
tations 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 self-
advocates. 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, deficiência (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-mental-
suffering’’ 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 low-
income area of Rio de Janeiro; a Centro de Atenção 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

movements and political activism in the implementation of the Sistema Único de
Saúde (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
the health sector, and Sistema Único de Saúde (Brazilian Unified Health System—
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 Atenção 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 replace-
ment 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; Tenório 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 Atenção 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 Atenção 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.
6
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 Associação
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 crianças loucas (mad children) under the broad category of
‘‘socially marginalized subjects.’’ In the early 2000s, the Rede de Atenção
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 João Biehl in his book ‘‘Vita—Life in a Zone of Abandonment’’ (2005).
8
The official terminology about disability adopted in Brazil follows the person-first language (pessoa
com deficiência). 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.
9
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 Atenção 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 non-
medical 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 Atenção 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.
11
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-à-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, psycho-
analysts 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 Associação
de Amigos do Autista (Association of Friends of Autistics—AMA) in São Paulo.12
AMA-São 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-São Paulo is still the
largest and best structured in the country.
The first national level association focused exclusively on lobbying and
awareness-raising, the Associação 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 São Paulo is the largest city in Brazil, the importance and significance of this association has
been enormous.
13
To name a few—Associação Brasileira para Ação por Direitos das Pessoas com Autismo (Brazilian
Association for Action for the Rights of People with Autism—ABRAÇA), Movimento Orgulho Autista
(Autistic Pride Movement—MOAB), Associação 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), Associação 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 Associação
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 São
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 methodolo-
gies 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 Júnior—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 Júnior 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 Criança 2014.
See: http://autismoerealidade.org/noticias/cartilha-da-inclusao-escolar/ Accessed: September, 2014).

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meanings of the term than deficiência (deficiency), the Portuguese term for
disability. Many mental health professionals in the audience, especially psycho-
analysts, 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 Júnior 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 Júnior 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 diagnosis-
based 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, Associação Brasileira para Ação por Direitos

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das Pessoas com Autismo (Brazilian Association for Action for the Rights of People
with Autism—ABRAÇA), 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’’ (ABRAÇA 2014). Inspired by a well-
known 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 (Crônica 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 usuários21), 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 Atenção 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 neurodi-
versity. 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 disability-
21
Protagonismo dos usuários 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.

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