Listen to this story:
In December 2020, Waldecy Rodrigues, professor of economics at Universidade Federal do Tocantins in Palmas, Brazil, emailed me with an invitation to work on a project about public policies pertaining to autism in Brazil. I had never thought about autism through the lens of policy planning. I am a scientist, not a policymaker. But he told me that my experience conducting systematic reviews would be necessary to start the project.
After reviewing the literature, though, I was surprised to find few relevant publications to draw on. Almost all the publications about autism and education, health services and advocacy were in and about English-speaking countries.
As it turns out, almost all countries lack sociodemographic data about their autistic citizens. As a result, we know little about how the experiences of autistic people vary with age, ethnicity, race, educational levels, familial structure, income and more within our borders — data that are crucial to providing specialized services and creating effective policies.
But I believe that by learning from the challenges and successes of other nations that capture better data, Brazil could become a leader in planning for the needs of autistic individuals.
The dearth of data in Brazil and in most other countries results from a lack of dedicated infrastructure: There is no governmental entity that specializes in autism and no centralized system for collecting administrative data.
One of the few exceptions is the United States, which has a robust system for capturing administrative data to plan policies and services to support the autistic community. The U.S. Centers for Disease Control and Prevention (CDC) regularly surveils autism prevalence. The U.S. Department of Health and Human Services has an Interagency Autism Coordinating Committee that supports systematic research across institutions. Individual states, such as Pennsylvania, perform their own administrative censuses to collect sociodemographic data about the autistic community. Each of these entities partners in different ways with advocacy groups.
To better understand how these and other groups in the U.S. structure their data systems, and the role of the state with respect to its autistic citizens, since September 2021, Rodrigues and I have been carrying out exploratory research under the sponsorship of the Fulbright Commission and in partnership with Lindsay Shea at the A.J. Drexel Autism Institute in Philadelphia, Pennsylvania. Our findings could help Brazil and other low- to middle-income countries begin to collect sociodemographic data on autistic people and provide specialized autism services. This partnership could also lead to discoveries to help the U.S. better monitor and serve families from all sociodemographic backgrounds.
So far, we have analyzed the institutional framework in the U.S., including advocacy groups, such as Autism Speaks, that are mostly philanthropic in aim; research groups such as the International Society for Autism Research; and public health entities such as CDC, which are focused on researching and providing services for autistic people.
How do we transfer and adapt successful practices and institutions from the U.S. to Brazil? Should Brazil follow the same steps as the U.S. — it has taken more than 20 years and the passage of new laws to ensure autistic people in the U.S. have services and to establish advocacy groups and philanthropic organizations to support autism research — or is there a way to accelerate this process?
We argue that the best path forward involves three steps. The first step should be defining the limits of what is possible in Brazil — which institutions are needed and could be established to collect sociodemographic data, and what budget is available. This step also includes identifying which processes are suitable for Brazilian culture and which require adaptation.
The second step should be to identify the main stakeholders to develop a strategic plan. We propose that there should be three main stakeholders involved in these processes: advocacy groups, agencies specializing in services for autism, and the academic community focused on research about autism. In alignment with public health models for autism detection, intervention and policy, we assert that the infrastructure we create for collecting and utilizing sociodemographic data about autism in Brazil should be developed across these stakeholders simultaneously.
The third step is to ensure that autistic people and their families participate in the process to avoid any unilateral top-down policy planning, which occurs too often and fails to put at the center of any decision the voices and lived experiences of the people affected by those decisions.
As one of the largest countries in the world, Brazil urgently needs to take these steps to develop smart infrastructure, policy and planning to serve what appears to be a growing number of autistic people, as autism prevalence increases globally. Without this progress, our communities lack the information needed to advance solutions to improve quality of life and outcomes for autistic people.
Wainesten Camargo da Silva is a Ph.D. candidate at the Universidade Federal do Tocantins (UFT) in Palmas, Brazil. Waldecy Rodrigues, professor of economics at UFT, and Lindsay Shea, director of the Policy and Analytics Center at the A.J. Drexel Autism Institute in Philadelphia, Pennsylvania, also contributed to this article.
Cite this article: https://doi.org/10.53053/ICHG6728