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.
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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 Família (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).
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 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).
This is especially the case in important Brazilian states, such as Rio de Janeiro, Minas Gerais, and São Paulo.
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).
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.
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, 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.
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).
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.
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).
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.
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).
Since São Paulo is the largest city in Brazil, the importance and significance of this association has been enormous.
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 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.
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.
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.”.
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.
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.”.
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).
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.).
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).
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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Rios, C., Costa Andrada, B. The changing face of autism in Brazil. Cult Med Psychiatry 39, 213–234 (2015). https://doi.org/10.1007/s11013-015-9448-5
- Public policies
- Mental health
- Identity politics