Autism in Brazil from advocacy and self-advocacy perspectives: A preliminary research report
In Brazil, autism has historically been classified as a psychiatric condition – a psychosis – and just recently has been included in the category of “disability.” Autism is being seen differently according to two traditions with specific historical backgrounds –mental health and rehabilitation– each one with its own point of view. The understanding of autism as psychosis or as disability is now a polemic issue in this country, and depending on the definition and the “pathology” model in use, different treatments are provided. Until the 1980s, autism and other psychiatric diagnoses were entirely the venue of psychiatrists and psychoanalysts, to be treated through medication or psychoanalysis, as the professional saw fit. Special “Children’s Pavilions” within psychiatric institutions were early attempts at treatment, though many devolved into custodial care as the “children” became adults. Recently, there is new legislation for people with mental illness or disability in Brazil. There is specific recent legislation to ensure autistic citizens the rights to appropriate education, treatment, and social inclusion, although, it does not fully encompass the complex philosophical and ideological background associated with this issue. The tendency in Brazil is to provide public policies to support the inclusion of people with disability in general in the work force, with less emphasis per area of disability.
Health care reforms in Brazil over the past two decades have made medical and psychosocial care and non-institutionalized approaches much more accessible, but general practitioners and community health workers may not have the expertise necessary to identify autism, and many Brazilians in remote areas still lack access to specialists. The monumental 482-page History of the Movement of People with Disability in Brazil (2010) has but a few passing mentions of autism. Recently, a movement of families and self advocates, with the support and collaboration of specialists, has sought to expand policy definitions of disability to provide autistics with the civil rights and protections available to “disability” groups.
To fill this need, parent advocacy organizations formed and became fundamental sources of information for professionals as well as parents. The first parent organization, the Association of Friends of Autistics (AMA), began in São Paulo in the 1980s. This organization formed in a time of political turmoil and flourished despite a lack of government support. The end of the military dictatorship coincided with movements to deinstitutionalize long-term psychiatric residents. This led some parents to protest deinstitutionalization, due to the lack of community-based services. The AMA, organized to respond to the needs of autistic children and their families, is one of the Brazilian alternative approaches that have emerged to address the failure of governmental and medical establishments to provide community-based services for autistic children. It is an example of how parents can lead the way, promoting debates between professionals and policy-makers and creating its own alternatives to education and treatment. Nowadays, there are treatment perspectives related to health reforms and rehabilitation innovations associated with technologies and accessibility.
There were tensions between professionally driven vs. parent-driven models. It was difficult for professionals to cede authority to parents, especially when long-held theories and systems of autism treatment were being criticized as lacking any evidence base. The AMA created a national network of parents and professionals who viewed autism as a cognitive and developmental disability rather than only as psychiatric dysfunction, and promoted national and international encounters in which professionals with different backgrounds, including psychiatry and psychoanalysis, could learn new perspectives and approaches. 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.
By organizing regular educational events about current scientific research, the AMA used the knowledge they gathered from abroad to start their own unofficial “autism school without walls.” They used the scientific events to increase the organization’s sustainability, and become an authoritative resource for parents and professionals, with the aim of diversifying treatment strategies in Brazil. Parent leaders direct the flow of information and the development of services with its specialized team workers. This is not a charity-based model. Neither is it a professional-focused model, as it exists in the mental health or rehabilitation public systems. It is a multi-varied model that incorporates medical, educational, social, and cultural components. It is a rights-based approach. The parents advocate for their children’s right to education and services that are not being provided by government and medical professionals. They created their own institutions to make up for the lack and, with the help of specialists who share similar perspectives, they have been applying a new system for education and treatment that grows each day in Brazil.
In the first decades of the 21st century, parents remain dissatisfied with what the government is providing for their children. Despite health care reforms, there is still a consistent lack of investment by the Brazilian government in ensuring appropriate services for autistic children and adults. A new generation of organizations has been formed, including: Mão Amiga (Friend’s Hand) and Associação em Defesa de Autismo (ADEFA, Association in Defense of Autism). These groups are trying to succeed in discussing policy change on the municipal, state, and federal levels. In Brazil, policy debates still need to include different perspectives and points of view.
Although autistic self-advocacy and a discourse on neurodiversity is starting to emerge in Brazil, organized groups of autistic self-advocates are rare. Unlike the United States, there do not appear to be sharp divisions between parents of young children and adult self-advocates. Although there are heated public debates about traditional vs. alternative treatments from the mental health and rehabilitation area, that division reflects field differences. Like the passionate and often hostile discourse between different constituencies in the United States, Brazilians are also engaging in escalated conflicts over different philosophies and approaches to autism, especially considering the varied practices evident in this country. The parent groups do put a steady pressure on professionals to replace outdated approaches and to promote more evidence-based approaches. If sometimes it is possible to have a sense of unity and common cause between parents, autistic self advocates, professionals, and researchers, what is still stronger in Brazil is the differences and the lack of consensus of what is really good for autistic persons. So, it is necessary to enlarge the knowledge of how other types of potentially divisive social difference are approached (or strategically avoided) in Brazil in the area of autism.
More research is needed. How do gender, class, and race intersect with the experience of autism in Brazil? How do they influence diagnosis and access to services? We are seeking sponsorship to conduct a thorough examination of Brazilian autism organizations, advocacy and self advocacy movements. We seek to identify and interview twenty-first century leaders and activists. Children who are receiving services in the newest generation of autism organizations are coming of age. What will happen as these Brazilian children, “higher functioning” due to improved diagnosis, education and treatment, are the first generation to grow up knowing they are autistic? Many have had inclusive educations and are currently trying to enter the workforce. What are their experiences in school and in their careers? Will they reach out to each other both nationally and internationally? How will they change the next generation of autism discourse in Brazil?
School of Health Technology and Management, Stony Brook University
Mestrado Profissional em Psicanálise, Saúde e Sociedade Universidade Veiga de Almeida
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.