September 2023, study by Famivita with more than 2,500 participants between April 12 and 18, 2023: Bringing more information and visibility to Autism Spectrum Disorder (ASD) is one of the greatest challenges in contemporary Brazil, involving this neurological condition. ASD is a disorder with main characteristics including difficulties in social interaction, verbal and physical impairments, and restricted and repetitive behavior patterns. According to the World Health Organization (WHO), approximately 70 million people worldwide have ASD.

Typically, the disorder persists into adolescence and adulthood, and in many cases, its signs become apparent during the first five years of life. It is important to remember that the earlier parents observe and identify these characteristics and seek help, the better. This is because several studies have shown that early intervention, started before the age of three, leads to more significant results in the development of children with autism.

Since the disorder manifests in different ways in each child, therapy recommendations usually vary. However, the various alterations in neurological processes—such as changes in growth, chemical reactions, and neuron connections—are common to all autistic individuals, and although there is no cure, it is worth emphasizing that it can be alleviated with treatments involving areas such as behavior, communication, and pedagogy, among others. Regarding the topic, in our latest study 83% of people said they were aware of this important information, namely that the signs of autism can be observed from early childhood.

Did you know that the signs of autism can be observed from early childhood?

  • Especially those aged 25 to 29 years responded positively about knowing that the signs of autism can be observed in childhood, with 86%.
  • Next came those in the age group 40 to 44 years, with 88%.
  • Among women, 84% said they were aware of this, and for men, 69% responded positively.
  • 85% of women trying to get pregnant claimed to have this information.

Scarce data

In Brazil, there is a gap when it comes to more accurate data relating to autism. For example, to this day, there is only one prevalence study in the country, conducted in 2011 in Atibaia (SP), showing 1 autistic person for every 367 inhabitants (or 27.2 per 10,000). The work was led by physician and researcher Marcos Tomanik Mercadante [1960-2011], a child and adolescent psychiatrist and autism reference in the country, and took place in a neighborhood of 20,000 inhabitants in the city. It is worth noting that this was a pilot study, meaning a sort of small-scale test of the proposed procedures, materials, and methods.

On the other hand, it is estimated that each year in the United States, about 50,000 young people with ASD reach adulthood at age 18. In Brazil, there are also no figures on adults with autism. The average age of diagnosis in the US is 4 years old, according to a 2018 study in 11 states. In Brazil, a study, also a pilot, carried out only in the city of São Paulo (SP), also in 2018, found the average age of autism diagnosis at 4 years and 11 and a half months (4.97), but there was a wide variation noted, so further research in this regard is necessary.

To improve this context of knowledge about ASD in Brazil, the IBGE 2022 Census included, for the first time, autism in its statistics, aiming to map how many people live with the disorder and how many might have it but have not yet been diagnosed. The data is yet to be published. Currently, the estimate is that 2 million people in the country have autism, and in our study 61% of participants reported being aware of this.

Did you know that there are more than two million autistic people in Brazil?

  • The information about the existence of 2 million autistic people in Brazil is particularly well known among the age groups 35 to 39 years and 40 to 44 years, at 65%.
  • Among women, 63% said they were aware of this, while among men, 43% reported knowing this figure in the country.
  • Especially in the age group 25 to 29 years, 71% noted that they know someone with autism.

Knowledge is power

The expectation is that the more information and awareness about ASD, the more investments and research will be conducted, more accurate diagnoses will be made, more well-prepared and humanized doctors will be involved in this scenario, and more teachers and schools will be able to receive autistic people, which means greater quality of life for those with Autism Spectrum Disorder. Our study also showed that 66% of people know at least one person with autism, with 54% among men and 67% among women.

It is important to mention that it was only in the 1990s that the idea of “spectrum” gained traction in the scientific community—thanks to the work of English psychiatrist Lorna Wing [1928–2014]. She was the first to argue that different forms of autism should not be reduced to a single parameter. However, the actual change in terminology occurred only in 2013, with the publication of the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association (DSM-5). In it, the various disorders in the “autism family” were brought together under the umbrella of the autism spectrum.

Thus, so-called "classic autism” began to share space with disorders previously categorized separately, such as Asperger’s Syndrome. Names like Asperger, in fact, are no longer officially used, but many people diagnosed with mild autism still use the term to identify themselves.

Ranking of states where participants know the number of autistic people in Brazil
  • 1.Piauí
  • 2.Tocantins
  • 3.Roraima
  • 4. Pará
  • 5.Mato Grosso
  • 6.Espírito Santo
  • 7.Pernambuco
  • 8.Rio de Janeiro
  • 9.Alagoas
  • 10.Amazonas
  • 11.Minas Gerais
  • 12.Santa Catarina
  • 13.Ceará
  • 14.Goiás
  • 15.São Paulo
  • 16.Bahia
  • 17.Maranhão
  • 18.Rio Grande do Sul
  • 19.Acre
  • 20.Paraíba
  • 21.Sergipe
  • 22.Mato Grosso do Sul
  • 23.Amapá
  • 24.Paraná
  • 25.Distrito Federal
  • 26.Rio Grande do Norte
  • 27.Rondônia