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” 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.

This is a preview of subscription content, access via your institution.


  1. 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 Família (Family Health Program—PSF) and the Rede de Cuidados à Pessoa com Deficiência (Network of Care to the Person with DisabilityRCPD), as well as other sectors of public services (for example, programs in the area of education and social service).

  2. 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 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. 3.

    This is especially the case in important Brazilian states, such as Rio de Janeiro, Minas Gerais, and São Paulo.

  4. 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).

  5. 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. 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, 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. 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. 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. 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).

  10. 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. 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).

  12. 12.

    Since São Paulo is the largest city in Brazil, the importance and significance of this association has been enormous.

  13. 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 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. 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. 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. 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.

  17. 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. 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: Accessed: September, 2014).

  19. 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. 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).

  21. 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.


  1. ABRAÇA 2014 Sou Autista, Tenho Minha Voz. (Manifesto)., accessed: September 2014.

  2. Amarante, Paulo 2007 Saúde Mental e Atenção Psicossocial. Rio de Janeiro: Ed. Fiocruz.

  3. Amarante, Paulo, ed. 1995 Loucos Pela VidaA trajetória da reforma psiquiátrica no Brasil. Rio de Janeiro: SDE/ENSP.

    Google Scholar 

  4. Anastasiou, Dimitris, and Kauffman, James 2013 The Social Model of Disability: dichotomy between impairment and disability. Journal of Medicine and Philosophy, 38: 441–459.

    Article  Google Scholar 

  5. Barros, Denise B. 2014 Os usos e sentidos do metilfenidato: entre o tratamento e o aprimoramento. Tese (Doutorado em Saúde Coletiva). Rio de Janeiro: Universidade do Estado do Rio Janeiro.

  6. Biehl, João 2005 Vita: Life in a Zone of Social Abandonment. Berkley: University of California Press.

    Google Scholar 

  7. Block, Pamela, and Fátima Cavalcante 2012 Autism in Brazil from Advocacy and Self-advocacy Perspectives: A Preliminary Research Report., accessed July 2014.

  8. Block, Pamela, and Fátima Cavalcante 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.

  9. Brasil 1988 Constituição da República Federativa do Brasil. Brasília: Diário Oficial da União, 5 de outubro de 1998.

  10. Brasil 2001 Lei nº 10.216, de 6 de abril de 2001—Dispõe sobre a proteção e os direitos das pessoas portadoras de transtornos mentais e redireciona o modelo assistencial em saúde mental. Brasília: Diário Oficial da União, 06 de abril de 2001.

  11. Brasil 2002 Portaria GM nº 336, de 19 de fevereiro de 2002Estabelece as modalidades CAPS I, II E III. Brasília: Ministério da Saúde.

  12. Brasil 2012 Lei nº 12.764, de 27 de dezembro de 2012Institui a política nacional de proteção dos direitos da pessoa com transtorno do espectro autista e altera o §3º do art. 98 da Lei nº 8.112, de 11 de dezembro de 1990. Brasília: Diário Oficial da União, 27 de dezembro de 2012.

  13. Campbell, Fiona K. 2009 Contours of Ableism: the Production of Disability and Abledness. Palgrave Macmillan, 2009.

  14. Carlson, Licia 2010 The faces of intellectual disability: philosophical reflections. Bloomington: Indiana University Press.

    Google Scholar 

  15. Carvalho, Antônio Ivo, Marcia Faria Westphal, and Vera Lucia G.P. Lima 2007 Health Promotion in Brazil. Promotion & Education 14(7):7–12.

  16. Comunidade Aprender Criança. 2014 Cartilha da Inclusão Escolar: inclusão baseada em evidências científicas. Ribeirão Preto: Ed. Instituto Glia.

  17. Conrad, Peter 2007 The Medicalization of Society: on the Transformation of Human Conditions into Treatable Disorders. Baltimore: the John Hopkins University Press.

  18. Couto, Maria Cristina Ventura 2004 Por uma política Pública de Saúde Mental para Crianças e Adolescentes. In A Criança e a Saúde Mentalenlaces entre a clínica e a política. Tânia Ferreira, org. Belo Horizonte: Autêntica/FHC-FUMEC.

  19. Couto, Maria Cristina Ventura, Cristiane S. Duarte, and Pedro Gabriel G. Delgado 2008 A Saúde Mental Infantil na Saúde Pública Brasileirasituação e desafios. Revista Brasileira de Psiquiatria 30(4):390–398.

  20. Crônica Autista N.d. Crônica Autista. Um apanhado do noticiário sobre autismo e autistas. Accessed August 2014.

  21. Davis, Lennard 2013 The End of Identity Politics: on disability as an unstable category. In The Disability Studies Reader. 4th ed. Lennard J. Davis, ed. New York: Routledge.

    Google Scholar 

  22. Dawson, Michelle 2004 The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA Industry. Avaliable at, accessed August 2014.

  23. Elsabbagh, Mayada, Gauri Divan, Yun-Joo Koh, Young Shin Kim, Shuaib Kauchali, Carlos Marcín, 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

  24. Eyal, Gil, Brendan Hart, Emine Onculer, Neta Oren, and Natasha Rossi 2010 The Autism Matrix—the Social Origins of the Autistim Epidemic. Cambridge: Polity Press.

    Google Scholar 

  25. 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.

  26. Friend, John M. 2014 The Biopolitics of Policy-Making: Medical Activism in the Century of the Brain. New Political Science 36(1): 32–51

    Article  Google Scholar 

  27. Ginsburg, Faye, and Rayna Rapp 2013 Disability Worlds. Annual Review of Anthropology 42(4.1–4.16): 15-33.

  28. Goulart, Maria Stella B. 2007 As Raízes Italianas do Movimento Antimanicomial. São Paulo: Casa do Psicólogo.

    Google Scholar 

  29. Hart, Brendan 2014 Autism Parents & Neurodiversity – radical translation, joint embodiment and the prosthetic environment. BioSocieties 9(3): 284-303.

    Article  Google Scholar 

  30. Kittay, Eva Feder 2001 When Caring Is Just and Justice Is Caring: Justice and Mental Retardation. Public Culture 13(3): 557-579

    Article  Google Scholar 

  31. Kittay, Eva Feder, and Licia Carlson, eds. 2010 Cognitive Disability and Its Challenge to Moral Philosophy. Oxford: Wiley-Blackwell.

    Google Scholar 

  32. Lakoff, Andrew 2005 Pharmaceutical Reason: knowledge and value in global psychiatry. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  33. Lanna Jr., Mário Cléber Martins, comp. 2010 História do Movimento Político das Pessoas com Deficiência no Brasil. Brasília: Secretaria de Direitos Humanos/Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência.

  34. Lima, Rossano C. 2014 A Construção Histórica do Autismo. Ciências Humanas e Sociais em Revista 36(1): 109-123

    Google Scholar 

  35. 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.

  36. Manifesto 2013 Manifesto do Movimento Psicanálise, Autismo e Saúde Pública., accessed August 2013.

  37. 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)

  38. Mello, Ana Maria S. Ros de, Maria América Andrade, Helena Chen Ho, and Inês de Souza 2013 Retratos do Autismo no Brasil. São Paulo: AMA.

  39. Nadesan, Majia Holmer 2005 Constructing Autism: unravelling the ‘truth’ and understanding the social. New York: Routledge.

    Google Scholar 

  40. Nogueira, Geraldo 2012 Autismo: Conhecer e Agir.—geraldo-nogueira, accessed August 2013.

  41. Nogueira, Geraldo 2013 Autismo e DeficiênciaLei nº 12.764/2012. ReaçãoRevista Nacional de Reabilitação 16(91): 25-26.

  42. Nunes, Fernanda Cristina Ferreira 2014 Autuação Política de Grupos de Pais de Autistas no Rio de Janeiroperspectivas para o campo da saúde. Dissertação (mestrado em Saúde Coletiva). Rio de Janeiro: Universidade do Estado do Rio Janeiro.

  43. Paula, Cristiane S., Eric Fombone, Carlos Gadia, Robert Tuchman, and Michael Rosanoff 2011a Autism in Brazilperspectives from science and society. Revista da Associação Médica Brasileira 57(1): 2-5.

    Article  Google Scholar 

  44. Paula, Cristiane S., Sabrina H. Ribeiro, Eric Fombone, Marcos T. Mercadante 2011b Brief Report: Prevalence of Pervasive Developmental Disorder in Brazil—a pilot study. Journal of Autism and Developmental Disorders 41:1738-1742.

    Article  Google Scholar 

  45. Ortega, Francisco 2009 Deficiência, Autismo e Neurodiversidade. Ciência e Saúde Coletiva 14: 67-77.

    Article  Google Scholar 

  46. Ortega, Francisco, and Suparna Choudhury 2011 ‘Wired up differently’: Autism, adolescence and the politics of neurological identities. Subjectivity 4(3): 323-345.

    Article  Google Scholar 

  47. Rizzini, Irene, coord. 2008 Do Confinamento ao Acolhimento: institucionalização de crianças e adolescentes com deficiênciadesafios e caminhos. Relatório de Pesquisa. Rio de Janeiro: CIESPI.

  48. Rizzini, Irene, and Neli C. Almeida 2011 A Institucionalização de Crianças e Adolescentes com Deficiência: anotações para uma agenda de política pública. Revista Saúde & Direitos Humanos 7(7):159-177.

    Google Scholar 

  49. Rosenberg, Charles 2006 Contested boundaries. Psychiatry, disease, and diagnosis. Perspectives in Biology and Medicine 49(3): 407-424.

  50. Russo, Jane 1997 Os Três Sujeitos da Psiquiatria. Cadernos do IPUB 8: 12-21.

    Google Scholar 

  51. Shakespeare, Tom 2006 Disability Rights and Wrongs. New York: Routledge.

    Google Scholar 

  52. Shakespeare, Tom 2013 The Social Model of Disability. In The Disability Studies Reader. 4th ed. Lennard J. Davis, ed. New York: Routledge.

    Google Scholar 

  53. Siebers, Tobin 2013 Disability and the Theory of Complex Embodiment: for identity politics in a new register. In The Disability Studies Reader. 4th ed. Lennard J. Davis, ed. New York: Routledge.

    Google Scholar 

  54. 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.

  55. Tenório, Fernando 2007 Questões para uma Atualização da Agenda da Reforma Psiquiátrica. In Saúde Mental e Saúde Públicaquestões para a agenda da Reforma Psiquiátrica. Maria Cristina Ventura Couto and Renata Gomes Martinez, orgs. Rio de Janeiro: NUPPSAM/IPUB/UFRJ.

  56. 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

  57. 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

    Article  Google Scholar 

  58. Weintraub, Kit 2005 Letter to the NY Times from Kit Weintraub. The Schafer Autism Report. Accessed August 2013.

  59. Wendell, Susan 2013 Unhealthy Disabled: treating chronic illnesses as disabilities. In The Disability Studies Reader. 4th ed. Lennard J. Davis, ed. New York: Routledge.

    Google Scholar 

  60. WHO-AIMS 2007 Report on Mental Health System in Brazil, WHO and Ministry of Health, Brasília, Brazil.

Download references

Author information



Corresponding author

Correspondence to Clarice Rios.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Rios, C., Costa Andrada, B. The changing face of autism in Brazil. Cult Med Psychiatry 39, 213–234 (2015).

Download citation


  • Autism
  • Public policies
  • Disability
  • Mental health
  • Identity politics