Autism in Brazil Part I

by Leila Couceiro

Published April 22, 2009 @ 09:54AM PT

[Ed. this is part of the International Perspectives series.]

You may have seen that old movie Change of Habit, where Elvis Presley "cures" an autistic girl just by holding her tenderly. In that 1969 flick, Elvis was a doctor who believed the child was withdrawn because she had been neglected by her parents. Growing up in Brazil in the 70's and 80's, we watched several repeats of that movie on TV. So that false stereotype is the image of autism that first comes to mind for many people of my generation. In a country where psychoanalysis is still very popular, it is not an easy feat to spread awareness that autism is not caused by bad parenting, but by genetic, biological factors. Still, starting in the 1990's, parents of autistic children have made tremendous progress by creating associations and foundations throughout the country, in order to provide information for the public and even treatment--from ABA and TEACCH to residential options for severely affected adults.

The Federal Government has just started to promote some awareness by recently creating an agency in Defense of People with Special Needs (CORDE) under the Human Rights Secretary. However, there are hardly any governmental programs devoted to autism treatment, except for a few psychiatric facilities and State grants given to parents' associations that offer clinics for people with autism and other disabilities. The most influential of these associations is AMA-Sao Paulo (the acronym in Portuguese reads like the word "LOVES" and it stands for Association of Friends of the Autistic), located in Brazil's largest city (population: 19 million).

AMA currently offers free therapy for 150 autistic children and teens, mostly ABA- and TEACCH-based, and residential placements. A new branch that will focus on therapy and job training for the severely autistic is slated to open this year. The waiting list in their clinics has people from all over the country and is over one-year long. There are only 50,000 people officially diagnosed with autism in Brazil at the moment, but specialists consider this number grossly underestimated, and that is due to a lack of national studies on incidence/prevalence of the disorder, plus insufficient reporting and awareness from doctors that see autistic kids nationwide. If actual autism rates don't seem to vary from one country to the other, Brazil could have more than 1 million autistics, given that the total population is now over 183 million people.

That's one of the reasons why AMA established a partnership with the Sao Paulo School of Medicine where they promote autism education for Med students specializing in Psychiatry. "We have many doctors in the largest cities that are updated in the latest autism studies, but the majority is still lacking knowledge on the disorder and its diagnosis", says Ana Maria Serrajordia de Melo, who founded AMA in 1983, when she realized there were not enough resources available to treat and educate her severely autistic son (now 30 years old). As a naval engineer, she had no previous experience in the autism field, but she got educated, even taking courses abroad, and joined forces with other parents who were also trying to improve the situation of autism families in Brazil.

But as much as AMA-Sao Paulo is doing a great job, it can't serve thousands of cases nationwide. The situation is more critical for families with severely autistic adults who are not accepted in public institutions and who can't afford--or live very far away from00the few private residential facilities available. Rio de Janeiro, the second largest city in the country, has just opened its first county clinic for autism, trying to give autistic people a more differentiated treatment than what they were getting in the public psychiatric hospitals. In the state of Bahia, a very strong parents association fought tooth and nail and was recently able to change the State legislation and ensure treatment for autistic people either in public institutions or private clinics contracted by the State.

Public schools in Brazil have typically very little Special Education resources, but two national charitable, non-profit organizations, Pestalozzi and APAE, have schools for people with intellectual disabilities. Inclusion in mainstream classrooms is a fairly new concept encouraged by the federal government, first by law in 1996, and then through a program that started in 2003 to train teachers and educators in 114 cities. According to psychologist and professor Jose Raimundo Facion, who advocates inclusion, "Brazil's legislation on special ed is good, but the government still doesn't provide enough resources for the schools to make sure that the child will receive adequate education."