ASD in Brazil: Working Towards “Ordem e Progresso”
In Brazil, about 1.5 million people are diagnosed with Autism Spectrum Disorder (ASD). Although the national motto is “Ordem e progresso”, order and progress, the country has a long way to go in order to fulfill this motto, especially in the ASD community. For much of its history, Brazil classified ASD as a psychiatric condition. It was not until recently that it was categorized as a disability. Throughout history and up until the 1980s, psychiatrists used psychoanalysis and medications as the primary mode of treatment for those with ASD.
However, several healthcare reforms and laws have been passed in the last two decades. In 2012, after much lobbying by parents and activists, a federal law was signed that deemed autism a disability, which also helped change its legal status so that those with ASD could receive benefits. Theoretically, this law also provided individuals with ASD access to health care and jobs, protection from abuse, and earlier diagnoses. However, due to parents’ insistence on their children being schooled with children without disabilities to develop social skills, all children with a disability were taught in integrated classrooms but also had to receive a specialized education outside of the classroom. While this sounded feasible, the education and health care systems lacked the funding and resources to facilitate this and moreover, only the wealthy Brazilian families could afford additional education outside of the classroom. These integrated classrooms included those with a range of disabilities and were in the hands of one teacher who had to teach students who all required very different levels of attention and methods of teaching. Facilities such as the Associação Mantenedora de Mães Especiais (Special Mothers Keeping Association) help support individuals with many disabilities but are continuously met with a lack of funding and resources to continue operating.
Probably the most important organization for supporting Brazilians with ASD is the Associação de Amigos do Autista (AMA, Association of Friends of Autistics), Brazil’s first autism awareness organization. It was founded in 1983 in São Paulo when ASD was considered a mental illness. The association offers speech therapy, counseling, education, fitness classes, and skill development classes to children ages 12 and below and focuses on a low child to trainer/educator ratio, usually around four children per educator. The AMA has been able to successfully promote the idea of ASD as a cognitive and developmental disability rather than a psychiatric dysfunction. They collected knowledge about research, treatment, and rehabilitation from the US and Europe and worked to integrate it into their Brazilian model. They have been able to provide these services for free because of increased government assistance, which provides 80% of their budget. However, this funding is still not enough for resources such as food, equipment, and training of professionals. Other organizations such as Mão Amiga (Friend’s Hand) and Associação em Defesa de Autismo (ADEFA, Association in Defense of Autism) have been lobbying for policy change at all levels of government.
One of the biggest struggles today in Brazil has been the early identification of ASD. Many mothers notice signs of ASD in their children at around 23.6 months, similar to other countries, yet a diagnosis only occurs around 60 months, which is about a 3-year delay. The path to a diagnosis is a long and hard one and many mothers encounter negative experiences with healthcare professionals which discourage them from expressing their concerns about their children.
Many organizations fighting for those with disabilities have also become increasingly worried since the election of far-right politician, retired military officer, and now President Jair Bolsonaro, who has been known to target those with disabilities in his rollback of equal access to jobs and benefits programs for low-income disabled workers, all of which violates U.N. Conventions for the safeguarding of those with disabilities. His presidency could push Brazil back in terms of progress for those with ASD and other disabilities and access to funding for awareness campaigns and facilities to educate and care for people with ASD.
Brazil has certainly come a long way in terms of health care reforms and the increased presence of resources for families and individuals with ASD. Of course, many challenges remain, such as early identification of ASD, education of the general population, lack of organized groups of self-advocates and conversation about neurodiversity, and providing resources for those from all socioeconomic and ethnic backgrounds in the country. The current government could be threatening to this progress of breaking down the stigma around disabilities such as ASD, but we hope that Brazilians continue to fight for equal rights and treatment of all their citizens so that they can truly become a nation of "ordem e progresso.”
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