Weinstein Camargo da Silva
PhD CandidateUniversidade Federal do Tocantins
In December 2020, I received an email from Waldecy Rodrigues, professor of economics at the Federal University of Tocantins in Palmas, Brazil, inviting me to participate in a project on public policy on autism in Brazil. I never thought of autism through the lens of policy making. I am a scientist, not a policy maker. However, he told me that he would need experience doing systematic reviews to start a project.
However, when I searched the literature, I was surprised to find few relevant publications. Almost all publications on autism and education, health services and advocacy were about English-speaking countries.
After all, almost all countries lack sociodemographic data on their autistic citizens. As a result, little is known about how the experiences of people with autism differ within national borders, including age, ethnicity, race, education level, family structure and income. These data are essential for providing professional services and creating effective policies.
However, by learning from the challenges and successes of other countries collecting better data, I believe Brazil can become a leader in planning tailored to the needs of individuals with autism.
T.The lack of data in Brazil and most other countries is due to the lack of dedicated infrastructure. There is no government agency dedicated to autism and no centralized system for collecting administrative data.
One of the few exceptions is the United States, which has robust systems for obtaining administrative data to plan policies and services to support the autistic community. The US Centers for Disease Control and Prevention (CDC) regularly monitors the prevalence of autism. The U.S. Department of Health and Human Services has an Interagency Autism Coordinating Committee that supports systematic interagency research. Individual states, such as Pennsylvania, conduct their own administrative surveys to collect sociodemographic data on autism communities. Each of these entities is affiliated with advocacy groups in different ways.
To better understand how these and other groups in the United States are building data systems, and the state’s role with respect to citizens with autism, Rodriguez and I have been working with Fulbright since September 2021. An exploratory study has been conducted under the auspices of the committee. In collaboration with Lindsay Shea of the AJ Drexel Institute for Autism in Philadelphia, PA. to help you start offering autism-specific services. The partnership could also lead to discoveries that will help the United States better monitor and serve families of all sociodemographic backgrounds.
So far, we have analyzed the institutional framework of the United States. This includes support groups that are primarily charitable, such as Autism Speaks. Research groups such as the International Association for Autism Research. And public health agencies such as the CDC are focused on researching and serving people with autism.
H.How can we transfer and adapt successful practices and institutions from the United States to Brazil? Should Brazil follow the same procedures as the United States? New legislation passed? Or is there a way? How to speed up this process?
We argue that the best path forward requires three steps. The first step is to define the limits of what is possible in Brazil. What institutions are needed and could be established to collect sociodemographic data, and what is the available budget? This step also includes identifying processes that are suitable for Brazilian culture and those that need adaptation.
The second step is to identify key stakeholders for developing a strategic plan. We propose that there are three primary stakeholders of her who are involved in these processes. Advocacy groups, agencies dedicated to autism services, and academic communities focused on autism research. The infrastructure we create to collect and utilize socio-demographic data on autism in Brazil, in line with the public health model for autism detection, intervention, and policy, will benefit these stakeholders. argue that it should be developed concurrently between
The third step is to get people with autism and their families involved in the process and avoid unilateral top-down policy making. those decisions.
As one of the world’s largest countries, Brazil has a growing global prevalence of autism, so it needs smart infrastructure, policies and plans to accommodate the growing number of people with autism. These measures are urgently needed to develop Without this progress, our community lacks the information needed to advance solutions to improve quality of life and outcomes for people with autism.
Wainesten Camargo da Silva holds a Ph.D. He is a candidate at the Federal University of Tocantins (UFT) in Palmas, Brazil. His Waldecy Rodrigues, professor of economics at UFT, and Lindsay Shea, director of the Policy and Analytics Center at the AJ Drexel Autism Institute in Philadelphia, PA, also contributed to this article.
Citing this article: https://doi.org/10.53053/ICHG6728
