Autism in Brazil

Looking at the historical panorama, researchers Francisco Ortega, Rafaela Zorzanelli and Clarice Rios say that autism in Brazil represents a scenario of "wars" that are inserted in the definition of what autism is, in mental health policies and in media narratives. The authors also point out that, historically, psychoanalysis has lost ground, while behavioural approaches have become the main ones in the field.^[1] In 2022, the Ministry of Health described autism as "a disorder characterised by the alteration of the individual's neurodevelopmental functions, interfering with the capacity for communication, language, social interaction and behaviour", with an emphasis on early diagnosis and "development of stimuli".^[2]

Numbers from Abra in 1997 estimated 600,000 people with "classic autism" in Brazil.^[3] In February 2011, the first autism epidemiology study in Latin America was published,^[4][5] with data from 2010, led by child psychiatrist Marcos Tomanik Mercadante. The study were based on a pilot project with a sample of 20,000 people^[6] in a neighbourhood in the São Paulo city of Atibaia,^[7] and measured the prevalence of one case of autism for every 368 children aged between 7 and 12.^[4][5] In the following years, different estimates of autism in Brazil were presented based on figures from the US Centers for Disease Control and Prevention (CDC). In 2014, it was estimated that there were 2 million autistic Brazilians,^[8] while by 2023 the number had risen to almost 6 million.^[9]

In 2019, in order to cover the gap in the number of autistic people in Brazil, Law 13.861/19 was sanctioned, which aimed to provide official data on the country. For this reason, the 2022 Brazilian census was the first to contain information on autism.^[10]

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According to historian Bruna Alves Lopes, there were few records of autism in Brazil until the 1980s. In the 1940s, when the work of psychiatrist Leo Kanner introduced autism as an independent diagnosis, Brazil already had a significant influence of psychoanalysis in child care. The psychoanalytic field began to penetrate the country in the 1920s and achieved hegemony within psychiatry itself by the mid-1950s.^[11] At the same time, the idea that the cause of autism was a lack of bonding between the parents (especially mothers) and the child emerged with Kanner in 1948, but it was psychoanalyst Bruno Bettelheim who developed it throughout the 1950s and 1960s.^[12][13]

In Brazil, the first journalistic publications related autism were made up of stories translated by news agencies from countries such as the United States and the United Kingdom and characterised the diagnosis as a disease. Some of them were influenced by a psychoanalytic bias, considering autistic children as belonging to cold and distant parents, while others addressed it as one of the symptoms of schizophrenia. Bettelheim's thinking had a significant influence on the journalistic content of these periods, with rare exceptions that cited Kanner's work and even behaviourist approaches. Most of them don't mention relevant and positive roles in relation to the families of autistic people.^[11]

At the same time, the professionals of autism was aligned with child psychiatry and child disability. In 1956, the Associação Paulista de Psiquiatria Infantil e Higiene Mental was created, and in 1965 the Associação Brasileira de Deficiência Mental. In the city of Porto Alegre, the Comunidade Terapêutica Leo Kanner was set up in 1963.^[14] For a large part of the population, autistic care took place in non-specialised institutions, such as the Pestalozzi Society, founded in 1932, and the Associação de Pais e Amigos dos Excepcionais (APAE), with units all over the country, and organised in 1962.^[11]

In the 1970s, discussions about autism in Brazil have grown, culminating years later in the formation of a community. In June 1970, the Centro de Estudos da Casa de Saúde Dr. Eiras, in Rio de Janeiro, held a debate on the diagnosis based on a film. Similar events began to take place over the years in institutions across the country, such as round tables based on films about autism, lectures, congresses and courses promoted by national and international professionals in psychiatry and other fields of knowledge, as well as the publication of the first national research on autism. Journalistic publications from this period began to mention the family's contribution to autism treatment more frequently. In 1978, Casa Azul was founded in Rio de Janeiro, probably the first organisation to offer exclusive therapeutic care for autistic children in Brazil. In the same year and in the same city, the Casarão Special Education Centre was also founded by a mother of an autistic child.^[11]

Autism as a movement began to consolidate in Brazil in the 1980s. It was during this period that family members, especially mothers, dissatisfied with the psychoanalytic blame they received for their children's disorder, began to advocacy to gain access to health services. Especially in large capitals such as São Paulo, Rio de Janeiro and Brasília, family members began to write letters to major newspapers such as Jornal do Brasil and draw the attention of public authorities to the cause of autism.^[11]

In April 1980, Rede Globo transmitted in TV the film Son-Rise: A Miracle of Love, which was a ratings success and prompted to rerun it several times throughout the decade. Some family members went so far as to claim that the film was a milestone for autism awareness in the decade.^[11] The film, however, highlights a therapeutic programme Son-Rise, which over the years has been shown to be ineffective in the treatment of autism.^[15][16]

The first legalised autism association in Brazil was the Associação de Amigos do Autista (AMA), founded in 1983^[17] by Marisa Fúria and Ana Maria Ros de Melo^[11] and formed by clients of doctor Raymond Rosenberg, who shared the anguish of not having more in-depth information about their children's diagnosis and treatment. The first meetings took place in Rosenberg's office and, shortly afterwards, the organisation had a school operating in the backyard of a Baptist church.^[18][19] There are also reports from family activists about autism associations without legal registration already existed in cities such as Belo Horizonte and Rio de Janeiro.^[20]

From the second decade of the 1980s onwards, the pioneering autism organisations had the common characteristic of striving for internationalisation and also for spreading the word about autism on national territory. The AMA got the support of actor Antônio Fagundes, who recorded a national TV commercial about the diagnosis for free in 1987. During this period, family activists travelled to foreign countries to learn about new forms of treatment and search for resources. The parents had several reference researchers. One of them was Bernard Rimland. In addition, the work of Ole Ivar Lovaas with Applied Behaviour Analysis also began to be disseminated.^[20][19][11] Originally, the autism movement was concentrated around mothers and fathers of autistic people, a trend that continued over the decades.^[21] Other phefirstna also began to contribute to the development of the autism scene in Brazil during the creation of the New Republic, such as the creation of the Sistema Único de Saúde (SUS) with the Brazilian Constitution of 1988 and psychiatric reform.^[22]

In 1988, the Associação Brasileira de Autismo (Abra) was founded in Belo Horizonte, with small organisations from other Brazilian states initially joining with the aim of consolidating a movement with national representation. Under this same unifying character, the Associação Terapêutica Educacional para Crianças Autistas (Asteca) promoted the First National Autism Congress in 1989 together with other organisations^[20][11] (with an audience of around 1,300 people).^[23] That year, there were already 23 autism associations in the country. In 1991, the second edition of the congress was attended by more than 2000 people, national speakers and international figures such as the psychiatrist and psychoanalyst René Diatkine and Eric Schopler, creator of the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) programme. During the event, Schopler, based on the research of the time, criticised the use of psychoanalysis to treat autism. The AMA implemented TEACCH over the following years, under the supervision of foreign professionals.^[20][11]

In addition to autism associations, family members began producing various materials to raise awareness of autism. In Rio, the Association of Parents of Autistic People in Rio de Janeiro (Aparj) launched Autismo em Revista in 1989, the first publication of its kind in Brazil. In addition, there was frequent dissemination of translated foreign articles and books, as well as talks to help families. During this period, the paediatrician Christian Gauderer launched the book Autismo, década de 80, a frequent reference for researchers and parents at the time. The AMA, in turn, began to have centres in various Brazilian states in all regions.^[20][11]

In the global history of autism, the 1990s were characterised by changes in the classification of autism diagnoses,^[24] and the central role of the internet in activism^[11] and, in Brazil, the period was marked by the development of educational policies.^[25] During Itamar Franco's presidency, special education was restructured, which coincided with the Salamanca Declaration.^[26] The pioneering organisations continued their activities, sometimes with financial problems and sometimes with new members joining. In this context, the AMA won that year's UNESCO Human Rights Prize in 1998, handed over by president Fernando Henrique Cardoso.^[18][27]

On 13 December 1998, a discussion list about autism was launched on Yahoo!.^[28] It was the most influential space for virtual interaction in Brazil about autism, where parents shared stories and doubts about the diagnosis.^[29] One of the characteristics of these virtual interactions, according to historian Bruna Alves Lopes, was solidarity between mothers, interaction with people from all over the country and a new characterisation of autism activism, despite the precariousness of the internet connection at the time, marked by dial-up connections.^[11] The group remained active and productive for years, even distributing information materials about autism. In 2006, members of the group even launched a translated version of an ABA training manual^[30] and some of its members founded various associations throughout Brazil, including the Associação de Familiares e Amigos da Gente Autista (Afaga).^[31]

On 18 June 2005, Autism Pride Day, family activists of autistic people in the Federal District held an information blitz about autism on the BR-040/050 highway.^[32] This group would later become the organisation Movimento Orgulho Autista Brasil (MOAB).^[33] Through MOAB, it was the first time that the topic of neurodiversity entered the discussions on autism in Brazil.^[34] In 2008, in Fortaleza, the Associação Brasileira para a Ação por Direitos das Pessoas com Autismo (Abraça) was founded by those in charge of the Casa da Esperança therapeutic institution with the collaboration of activists from other organisations, such as MOAB and Afaga.^[35][36]

At the end of 2009, a group of relatives of autistic people, belonging to organisations such as Moab, began to liaise with federal deputies and senators in Brasilia.^[37] According to Berenice Piana, the activist Ulisses Batista was in communication with Cristovam Buarque, asking for a public hearing on autism. She, in turn, met Paulo Paim, who was responsible for directing the Human Rights Commission to hold a hearing. The event took place on 24 November 2009, and has developed over the years into a public policy. The text of the law began to be written with the participation of various activists. According to Piana, the text was ready by March 2010, and thus filed. It was approved by the committee in 2011 and went to the plenary in June of that year.

On 27 December 2012, during Dilma Rousseff's government, the National Policy for the Protection of the Rights of People with Autism Spectrum Disorders was instituted, whereby autistic people were classified as people with disabilities.^[38] The policy also became known as the Berenice Piana Law, at the suggestion of then-senator Paulo Paim.^[11] The legislation had a significant impact on autism in Brazil and on the greater discussion of the disorder in the country.^[39][40] However, the legislation also caused controversy due to the president's vetoes of sections relating to special education and the granting of special hours to civil servants with autistic children.^[41] In addition, the treatment of autistic people in Psychosocial Care Centres, an agenda defended by some associations and movements, was the target of disagreements from other activists. The issue even became part of public hearings in the following years in the Chamber of Deputies.^[42]

During the 2010s, the participation of people diagnosed with autism in activism grew, with the emergence of blogs, video channels and books written by autistic people and organizations formed by autistics. Topics such as autism in women, sexuality and inclusion in the labour became more frequent.^[43][44] In 2016, Abraça promoted the 1st Brazilian Meeting of Autistic People, an unprecedented event in Fortaleza organised and dedicated solely to autistic people^[45] and, at the same time, the association became the first autism organisation in the country with an autistic president, Fernanda Santana.^[44] Solo activism by family members of autistic people has also grown, with the rise of names such as journalist Andréa Werner^[46] and television presenter Marcos Mion.^[47][48]

In the 2020s, autism legislation in Brazil began to expand beyond the federal level, with states such as Rio Grande do Sul^[49] and Pará promoting state policies aimed at autism.^[50] Different states in the country independently also began to pass legislation extending the validity period of autism reports, with activists justifying that the process of updating reports was exhausting and pointless, given that autism is a disorder without a cure.^[51][52] In 2021, the autism report debate gained national visibility with a bill aimed at all permanent disabilities.^[53] In 2023, the federal government sanctioned the Hidden Disabilities Sunflower of identification for people with hidden disabilities.^[54]

In 2021, autistic university students began to create autistic collectives at public universities across Brazil. The movement's first exponents were collectives at the University of São Paulo (USP) and the State University of Campinas (Unicamp).^[55][56] The following year, people involved with the autistic collectives got together with other activists and founded the Associação Nacional para Inclusão das Pessoas Autistas (Ania/BR).^[57]