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Treatment Pending: Legally Obligated to Treat Autism, Brazil Lacks Resources

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Although Brazilians have the right to education, as illustrated by this artwork on a São Paulo building, it is still out of reach for many—including, too often, people with autism. Image by Amanda Michelle Gordon. Brazil, 2018.

Although Brazilians have the right to education, as illustrated by this artwork on a São Paulo building, it is still out of reach for many—including, too often, people with autism. Image by Amanda Michelle Gordon. Brazil, 2018.

SAO PAULO, Brazil—Heverson Correia de Freitas, 36 years old, sits on the stairs of his Osasco, São Paulo home, swaying back and forth silently glancing at the walls or the floor, never truly making eye contact with those in the room. These are but a few of the telltale signs of autism, and in terms of the spectrum, his case is severe.

For people like Correia de Freitas affected by this developmental disorder in Brazil, the key problem is access to assistance. While the country is legally bound to secure these rights, there aren’t enough resources. Under a 2012 law, people living on the spectrum have the right to lead a dignified life, protection from abuse, access to health care, jobs, education, social assistance, and an early Autism Spectrum Disorder diagnosis. But what’s written in ink may not reflect reality.

According to Renata Flores Tibyriçá, a government lawyer who specializes in rights for the elderly and disabled, all children with a disability—not just those on the spectrum—are to be taught with their peers, mainstreamed in a classroom with children without any disabilities. Parents of children with ASD and other disabilities fought for integrated classrooms to give their children an opportunity to develop social skills. Disabled students are also supposed to receive additional specialized education outside of the classroom. It sounds like progress, but public education and health care institutions lack the resources to make this happen—and only the wealthiest Brazilians can afford private school options.

Within a single classroom designated for those with disabilities, an average of 14-20 children can be left to the care of a single teacher. That might be considered reasonable in a normal classroom setting, but in classrooms with students with many different disabilities, teaching large numbers of students proves challenging. “When you have to be trained in everything, you’re specialized in nothing,” Tibyriçá said, noting that it is impossible to expect one person to give all students the one-on-one attention they may require. Students with ASD, for example, have very different needs than vision-impaired students.

Resources to help families in Brazil are scarce, too. Only the Associacao Mantenedora de Maes Especiais (Special Mothers Keeping Association)—a facility that cares for individuals with any disability, not just ASD—has offered support to Correia de Freitas's family, according to his mother, Sonia Correia de Freitas. The center gives many families hope, but she said that AMME has come close to shutting its doors 3 times. She saw her son—who is the most seriously impacted on the spectrum among his peers, but has been going to the center for 16 years—improve right away at AMME. “He loves going to school, and he had learned to speak some small sentences,” she said.

Undoubtedly, the Association of Friends of Autistics (AMA), the country’s first autism awareness organization, is one of the most important organizations helping families coping with autism in Brazil. Founded in 1983, it dates back to a period when autism was regarded as a mental illness.

“It was a very difficult start,” said Ana Maria S. Ros de Mello, founder and current superintendent of AMA, who is trying to launch a movement for autism in Brazil. AMA supports research and works to deliver a dignified life for autistics, offering speech therapy, education, counseling, physical fitness, and skill development, to children aged 12 and below, with a relatively low ratio of children to trainers—as few as 4 children per educator.

AMA is able to provide these services at no cost because of the laws and agreements with the government—but current events, including the recent presidential election of far-right candidate Jair Bolsonaro, could threaten that funding. “We depend on the government, and in an election year, everything is uncertain,” Ros de Mello explained.

The government provides 80% of AMA’s budget, but even today that is insufficient. Expenses like food for the children in their programs, maintenance of property and equipment, and training depend upon additional donations and merchandise sales.

In Barretos, approximately 300 miles north of São Paulo, there are 48 confirmed ASD cases in children. Maria Alice Duarte Pereira, the Municipal Bureau of Education of Barretos’s pedagogical coordinator, is trying hard to uphold the rights of kids with ASD. Within the district, an autistic student receives the benefits both of peer development achieved only through the standard classroom setting and of one-on-one guidance from an additional teacher who assists the child.

This is a direct result of advocacy efforts, according to Pereira, but size may be a factor as well; Barretos (population 111,884) is far less populated than São Paulo, a city of more than 10 million.

In contrast to other institutions where people are convinced that those with a mental disability are unable to learn, disabled people in Barretos have a chance to develop skills to help them enter the workforce. Still, said, Pereira “Things can always be better,” as there aren’t enough ASD specialists, and some are not as skilled as they should or could be. Rather than relying on the government to solve the shortage problem, Pereira believes that universities should play a larger role by offering the public affordable training programs.

A shortage of people trained to handle the autistic population is common in Brazil. The training can be costly, and money, especially for those in the working class, can’t be set aside for education on ASD, preventing any real solutions. Educating the public however may be an uphill battle, as the general population has no real grasp on the issue of ASD.

To spread awareness and gain support from the public, advocates like Estevão Vadasz, a childhood psychiatrist who oversees the treatment of over 3,000 individuals on the spectrum, want to see a campaign akin to the country’s response to the AIDs epidemic in the 1980s. At that time, Brazil’s government created programs and distributed grants to prevent the virus from spending. Such an effort, Vadasz conceded, would cost millions in US dollars—a stretch in the current political and economic climates.