For the first time in history, the Brazilian Institute of Geography and Statistics (IBGE) counted the number of people diagnosed with Autism Spectrum Disorder (ASD) in the country. Data from the 2022 Census, released this Friday (23), reveal that 2.4 million Brazilians – the equivalent of 1.2% of the population – have been diagnosed with autism.
In Rio Grande do Norte, there are 37,625 people (1.1% of the population), with a higher prevalence among boys aged 5 to 9, an age group in which the percentage reaches 4.2%. In Natal, the state capital, the rate reaches 1.4% of the population — the highest among municipalities in Rio Grande do Norte with more than 100,000 inhabitants.
The release of the numbers is considered a historic advance by experts, as it reveals the prevalence of ASD among Brazilians, but also highlights important gaps in the structuring of public policies.
For neuropsychologist Samantha Maranhão, a specialist in the care of people with autism and coordinator of health education activities at the Santos Dumont Institute (ISD), statistical visibility establishes a new level of responsibility for the government. “Having this data in a systematized form is a historic gain for us to think about public policies and plan care actions. But, at the same time, it shows how much progress we still need to make in structuring services,” she says.
Samantha emphasizes that early diagnosis has progressed, but many families still have a long way to go before they can receive specialized care, especially due to the high demand for new cases identified. “The biggest challenge is meeting this high demand without creating waiting lists or delaying concrete actions to provide services; whether in healthcare, education, or in all the settings in which autistic people want to be involved. There is still a long time between seeking help and actually receiving help,” she says.
IBGE data also indicate that, in Rio Grande do Norte, the prevalence of the diagnosis is significantly higher among men (1.5%) than among women (0.8%), a pattern observed worldwide.
Another worrying number is the age range: among boys aged 0 to 4, the prevalence is 3%; among those aged 5 to 9, it rises to 4.2%. After the age of 20, the rate drops to less than 1%, which suggests a combination of underdiagnosis in adulthood and social invisibility.
The neuropsychologist also draws attention to school enrollment rates, which fall drastically with advancing age: while between 6 and 14 years old the majority of autistic children from Rio Grande do Norte are in school (more than 91%), among adults aged 25 or over the rate is less than 7%.
“When we look at the adult population, it is probably a population that is receiving a late diagnosis and unfortunately did not have access to education, to a quality health system, to provide support during this phase of childhood and adolescence, so they ended up growing up without education and with incomplete elementary education”, observes Samantha.
With the inclusion of ASD in the Census, as provided for in Law No. 13,861/2019, Brazil joins the group of countries that officially monitor the prevalence of the disorder. For the ISD specialist, the change paves the way for the formulation of evidence-based public policies, but requires more than numbers. “We need to look at our reality, based on our data and the profile of our population. Now, we will be able to look at this demand with data that is real and Brazilian,” she concludes.
Reception and care line
The Santos Dumont Institute maintains a line of care focused on the multidisciplinary care of children diagnosed with Autism Spectrum Disorder. Currently, only children who live in the municipality of Macaíba, where the ISD units operate, are monitored by the service, which operates through screening carried out once a year.
In addition, the ISD offers group health education activities aimed at parents and caregivers of children undergoing diagnostic investigation or already diagnosed with ASD, who live in any of the municipalities in the 7th Health Region (Extremoz, Macaíba, Natal, Parnamirim and São Gonçalo do Amarante). The goal of the groups is to provide educational moments so that they can provide daily stimulation with their children, in addition to bringing family members closer to the system and health professionals.
During the activities, tips are shared on topics such as nutrition, daytime and nighttime potty training, and communication in daily life. In addition, professionals provide guidance on how to deal with emotions and difficult phases, as well as aggression, on encouraging autonomy and independence, first aid, school and social inclusion, medication, and other topics.
Autism
According to the World Health Organization (WHO), Autism Spectrum Disorder (ASD) “refers to a series of conditions characterized by some degree of impairment in social behavior, communication and language, and by a narrow range of interests and activities that are unique to the individual and performed repetitively”.
About ISD
The Santos Dumont Institute (ISD) is a Social Organization linked to the Ministry of Education (MEC) and includes the Edmond and Lily Safra International Neuroscience Institute and the Anita Garibaldi Center for Health Education and Research, both in Macaíba. ISD's mission is to promote education for life, forming citizens through integrated teaching, research and extension actions, in addition to contributing to a fairer and more humane transformation of Brazilian social reality.
