Children with Autism in a Brazilian Context

by

Bárbara Costa Andrada, Clarice Rios

• LAST REVIEWED: 27 June 2018
• LAST MODIFIED: 27 June 2018
• DOI: 10.1093/obo/9780199791231-0203

Introduction

Talking about children with autism in a Brazilian context means, above all, telling a story about how a foreign concept, with its own historical trajectory abroad, becomes a widely spread, albeit highly contested, framework to organize various types of interventions, family arrangements, and public policies. This obviously does not mean that autism did not exist in Brazil prior to the diagnosis of autism becoming a public concern. Instead, it means, among other things, that the previous service structure and local ways of defining and dealing with conditions that are currently referred to as autism, need to be examined before we can talk about children with autism in Brazil. In other words, it is necessary to describe the institutional and epistemic context in which autism became a health and education-related concern for children in Brazil. Also important is to reflect on the cross-cultural translation, validation, and use of foreign theories, instruments, and therapeutic practices, and the many specific contexts for which this expertise is called. In this sense, a common trait among many of the sources here is that, in one way or another, they perform the task of turning a foreign diagnosis, with all of the expert knowledge and practices that accompany it, into a local reality. Another part of the process of situating children with autism in the Brazilian context is to consider the interface between autism as a health and education-related issue, and the broader social, economic, and political context that define Brazil as a nation-state. In a country where health is a universal right for all citizens, demanding public policies directed toward children with autism also demands their social and political recognition. Finally, the demand for social and political rights is made not by children with autism themselves, but instead by their parents and caregivers on their behalf. Therefore, it is also equally important to consider the lives and needs of parents and caregivers, including their hopes and concerns regarding their children and how their lives are entangled in such a way that autism should be more accurately considered a family issue, rather than an individual condition.

General Overview

The academic work on children with autism in Brazil can be divided into two major types—those focusing on epidemiological data about autism and those that explore the social and cultural issues that have followed the increasing visibility that autism has gained in recent years in Brazil. The articles Paula, et al. 2011a; Paula, et al. 2011b; and Teixeira, et al. 2010 fit into the first group. Paula, et al. 2011a and Teixeira, et al. 2010 give a more general overview of the challenges involved in gathering epidemiological data and providing services for children with autism, while Paula, et al. 2011b present a pilot study made to establish the prevalence of Pervasive Developmental Disorder (PDD) in Brazil. Arantes and Katz 2016, on the other hand, discusses what has become a source of major controversy concerning autism in recent years in Brazil—the approval of a law that establishes autism as a disability for legal purposes (see Brazil 2012, under Laws and Official Documents). The conceptual conundrums generated by this legal landmark can be better understood in the context of the increasing antagonism between parent activists and mental health professionals in the public health system. These mental health professionals usually reject the disability approach to autism based on its historical relation to the rehabilitation tradition by privileging a non-diagnostic specific approach to autism in mental health services, further defining autism more broadly as a kind of “severe mental suffering” (see also Rios and Costa Andrada 2015, under Public Policies, Rights, and Activism). Ortega, et al. 2016 describes this controversy by bringing research data collected through social network and Brazilian printed media on social representations about autism (see also Ortega, et al. 2013, and Rios, et al. 2015, under Diagnosis Processes and Social Conceptions on Autism). Fein and Rios 2016 is a report of an international workshop held in Rio de Janeiro, where autism in a Brazilian context was cross-culturally discussed. More specific themes related to children with autism, such as education, family, diagnostic process, services and interventions, public policies, and advocacy are addressed in the following sections.

• Arantes, Ricardo Lugon, and Ilana Katz. “Autismo, o campo das deficiências e as RAPS.” In O Capsi e o Desafio da Gestão Em Rede. Edited by Edith Lauridsen and Cristina Lykouropoulos, 25–31. São Paulo, Brazil: Hucitec, 2016.

  This chapter discusses the challenges of the public mental health sector after the approval of law 12.764/2012 (Brazil 2012, under Laws and Official Documents). The authors examine the epistemological change of legally understanding “autism as a disability” to this sector. By building conceptual bridges between its rationale and the social model of disability, the authors show some convergences regarding the assistance of children with autism. In Portuguese.

• Fein, Elizabeth, and Clarice Rios. “Autism Spectrum Disorders in Global, Local and Personal Perspective: A Conference Report.” Somatosphere (Online) (11 May 2016).

  This post written by the organizers of an international workshop on autism spectrum disorder (ASD) held in Rio de Janeiro in 2015 describes the overall event with a brief description of each participant’s presentation. The event gathered mostly Brazilian and North American scholars seeking to establish a cross-cultural conversation about ASD. A book bringing together chapters by the participants is in the process of being published.

• Ortega, Francisco, Rafaela Zorzanelli, and Clarice Rios. “The Biopolitics of Autism in Brazil.” In Re-Thinking Autism: Diagnosis, Identity and Equality. Edited by Katherine Runswick-Cole, Rebecca Mallet, and Sami Timimi, 67–89. London and Philadelphia: Jessica Kingsley, 2016.

  This chapter of a book on critical autism studies focuses on three different instances of public negotiation of the category—the “autism wars” within mental health policies and services after autism was legally defined as a disability in 2012; representations of autism in printed media in Brazil; and the role of laypeople in the public negotiation of autism in virtual social networks in Brazil.

• Paula, Cristiane, Eric Fombonne, Carlos Gadia, Robert Tuchman, and Michael Rosanoff. “Autism in Brazil—Perspectives from Science and Society.” Revista da Associação Médica Brasileira 57.1 (2011a): 2–5.

  This editorial presents the main debates of the 2010 Brazilian Meeting for Autism Research, a GAPH (Global Autism Public Health Initiative) action in Brazil, and identifies the challenges and barriers to autism research and services. The authors recommend that future research should focus on improving issues related to public health, particularly a population-based Brazilian prevalence study of ASD to properly inform public policies.

• Paula, Cristiane, Sabrina Ribeiro, Eric Fombonne, and Marcos Mercadante. “Brief Report: Prevalence of Pervasive Developmental Disorder in Brazil—A Pilot Study.” Journal of Autism and Developmental Disorders 41.12 (2011b):1738–1742.

  DOI: 10.1007/s10803-011-1200-6

  Focusing on a three-phase pilot study in a typical town in Southeast Brazil, the authors discuss the preliminary results of the prevalence of Pervasive Developmental Disorder (PDD) in Brazil. This is the first and only study in Brazil to rely on direct evaluation of children instead of case record reviews to determine eligibility. Authors found a PDD prevalence of 27.2/10,000 (95 percent CI: 17.6–36.8). Available online through purchase.

• Teixeira, Maria Cristina, Tatiana Mecca, Renata Velloso, et al. “Brazilian Scientific Output on Autism Spectrum Disorders.” Revista da Associação Médica Brasileira 56.5 (2010): 607–661.

  DOI: 10.1590/S0104-42302010000500026

  This article is a systematic review of the Brazilian scientific literature on ASD between 2002 and 2009. The profile of Brazilian scientific production on autism encompasses mostly theses and dissertations, with a minority of articles in high-impact-factor journals. Authors also emphasize the need for more studies, mainly due the lack of epidemiological studies on population-based samples, and the need for validation studies concerning early diagnosis and screening instruments.