The Scholarly Neglect of Black Autistic Adults in Autism Research

Abstract

Black autistic individuals, regardless of age, have not been centered in autism research. Instead, they often exist on the margins—on the periphery of autism research. In fact, Black autistic adults are largely absent from the literature. Most participants in autism research are majority-white autistic individuals and families. In this conceptual article, we use intersectionality and Dis/ability Studies and Critical Race Theory theories to contextualize Black autistic adults' experiences. Second, we argue that systemic disparities and methodological concerns are two contributors to the scholarly neglect of Black autistic adults in autism research. Third, we provide guidelines to support researchers in moving from neglect to inclusive research with Black autistic adults. Community brief Why is this topic important? The experiences of Black autistic adults are not well represented in research. The lack of cultural responsiveness in autism research ignores the nuanced experiences of Black autistic adults, which limits the ability to understand their experiences and effectively meet their needs. What is the purpose of this article? The purpose of this article is to highlight the void in autism research concerning Black autistic adults. This article is a call to action for research that is inclusive of Black autistic adults. Specifically, we (1) use intersectionality and Dis/ability Studies and Critical Race Theory theories to contextualize Black autistic adults' experiences, (2) describe the systemic disparities (e.g., health care) that contribute to the scholarly neglect of Black autistic adults, and (3) provide guidelines to support researchers in moving from neglect to inclusive research with Black autistic adults. What personal or professional perspectives do the authors bring to this topic? The first author identifies as a white, non-binary, doctoral student in Applied Developmental Science and Special Education. The second author identifies as a Black, cisgender female, Assistant Professor of Special Education. The third author identifies as a white, non-binary, autistic autism researcher. The fourth author identifies as a Black, cisgender male, doctoral student in Educational Equity. The fifth author identifies as a black, cisgender female, doctoral student in Educational Equity. The sixth author identifies as a Black, cisgender female, dual-licensed special education teacher, and doctoral student in Educational Equity. Although none of the authors embody the lived experience of being both Black and autistic, our research team is committed to supporting and advocating for Black autistic individuals through our ongoing professional development and dedication to strength-based, and identity-centered research. What is already known about this topic? Although we know about disparities in Black autistic children, little research has focused on the experiences of Black autistic adults. Most of what we know about autistic adults is based on the experiences of white participants. What do the authors recommend? First, we recommend that researchers work to understand how their own perspectives, values, and experiences shape their research (e.g., cultural reciprocity). Second, we recommend that researchers intentionally include the perspectives and experiences of Black autistic adults. This can include collaborating on research with Black autistic scholars and highlighting autistic and Black autistic led research. Finally, we advocate for systemic changes in institutions of higher education (e.g., reduce barriers to admission) and in communities (e.g., culturally responsive supports) to better address the inequities that impact the representation of Black autistic adults in autism research. How will these recommendations help autistic adults now or in the future? These recommendations will prepare researchers with strategies to effectively build partnerships with Black autistic adults in ways that honor their knowledge and contributions to the field. As a result, Black autistic adults will have more representation in autism research, both as participants and as leading scholars in the field. We hope that more inclusive representation of Black autistic adults will lead to more culturally responsive approaches in adult autism research.

Cite this

Kayla M. Malone, Jamie N. Pearson, K. M. Palazzo, Lonnie D. Manns, Amelia Q. Rivera, DeVoshia L. Mason Martin (2022). The Scholarly Neglect of Black Autistic Adults in Autism Research. Autism in Adulthood. https://doi.org/10.1089/aut.2021.0086

@article{m2022the,
  title  = {The Scholarly Neglect of Black Autistic Adults in Autism Research},
  author = {Malone, Kayla M. and Pearson, Jamie N. and Palazzo, K. M. and Manns, Lonnie D. and Rivera, Amelia Q. and Martin, DeVoshia L. Mason},
  year   = {2022},
  journal = {Autism in Adulthood},
  doi    = {10.1089/aut.2021.0086}
}

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