Why Does Racial Self-Identification Matter in Autism Research?
This question stayed with me after my first meeting with the leadership team of the Steinkopf Institute, based in Brasília, the capital of Brazil, which coordinates MAPA – Mapeamento da População Autista no Brasil, the first national initiative to build a sociodemographic profile of autistic children in Brazil. The study collects data on race, gender, geography, income, and access to public services and support policies.
Our partnership began with a methodological challenge: how could the team cultivate epistemological awareness among research volunteers so they could critically interpret the data's racial dimensions? Although race was included in the survey, the leadership observed that volunteers often treated it as a demographic variable rather than its historical and structural significance in Brazilian society. In the summer of 2025, I joined the team as a volunteer consultant to design a racial literacy training. The Center for African Education (CAE) Travel Grant from Teachers College supported this work, allowing me to apply my background as a Black Brazilian educator and M.Ed. graduate in Instructional Technology and Media to the project.
Early on, I saw that a training focused only on the sociocultural history of race in Brazil would not be enough. A literature review, drawing from educational psychology, critical race studies, and disability research, grounded a collaboratively designed curriculum that encouraged volunteers to examine their assumptions about race and disability. The training aimed to help nearly 20 volunteers from diverse backgrounds develop critical perspectives for interpreting the data. The internship was in person at the Institute, with remote sessions for alignment. Semi-structured interviews with the project’s core team further shaped the training, which emphasized reflection on how researchers' scientific assumptions shape knowledge production.
At first, I viewed the internship as an opportunity to apply my instructional design background. Still, it soon became intertwined with the start of my doctoral studies in Curriculum and Teaching. The ethical and methodological tensions I faced led me to question how research practices relate to power and positionality. As I began doctoral research on race, gender, and curriculum in Brazilian public education, I kept returning to issues that surfaced during the internship. Rather than naming race in research, I began to reflect on how it is shaped by context and epistemic perspective. My early coursework invited further reflection on how Afro-Amerindian-diasporic ways of knowing influence my subjectivity as a Black Brazilian woman and researcher. While my research does not focus on disability studies, the field experience offered practical lessons about how research methods and theories are lived and adapted, and the ways a researcher’s position can shape what becomes visible in knowledge production.
Looking ahead, I plan to build on this work by integrating the racial literacy curriculum and the reflections developed in Brasília into future research and teaching. My experience with MAPA has encouraged me to stay attentive to the complexities of identity and knowledge production within African and Diasporic education. I expect to keep drawing on these lessons as I refine my dissertation and seek opportunities to foster critical dialogue in academic and community settings.