Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production

Abstract

There has been a focus on autistic-led and participatory research in autism research, but minimal discussion about whether the field is hospitable to autistic involvement. While the focus on participatory and/or autistic-led research is abundantly welcome, a wider conversation should also happen about how autistic people are treated in the process of knowledge creation. As such, I present a critical reflection on my experiences of academia as an autistic autism researcher. I open by questioning whether I am an academic, an activist, or an advocate before discussing my journey through academia, and my exposure to dehumanizing, objectifying, and violent accounts of autism. I highlight how the construction of objectivity has resulted in a failure to question the validity of these dehumanizing accounts of autism, which are regarded as “scientifically-sound” by virtue of their perceived “objectivity.” Furthermore, I discuss how the idea of objectivity is used to side-line autistic expertise in disingenuous ways, especially when this knowledge challenges the status-quo. Despite claiming to be value-free, these dehumanizing accounts of autism embody social and cultural values, with a complete lack of transparency or acknowledgment. I then discuss how these dehumanizing accounts and theories—entangled in values—reverberate into autistic people's lives and come to be ways of constituting us. Following this, I discuss the rationality of the anger autistic people feel when encountering these accounts, and instead of urging people to distance themselves from these emotions, I discuss the value of “leaning-in” as a radical act of dissent in the face of research-based violence. I then make a call to action urging all those who write or speak about autism to engage reflexively with how their values shape their understanding and construction of autistic people. Lastly, I conclude by answering my opening question: I have emerged as an advocate, activist, and academic. For me, belonging to the autistic community, acknowledging our marginalization, and recognizing our suffering within society means that hope for a better and just future has always, and will always underpin my work.

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“Autism Research is in Crisis”: A mixed method study of researcher’s constructions of autistic people and autism research

“…Additionally, there has been a history of the relegation of first-hand accounts as biased or inaccurate by the nature of the fact that autistic people wrote them (Botha, 2021).…”

A Critical Realist Approach on Autism: Ontological and Epistemological Implications for Knowledge Production in Autism Research

“…The pursuit of a philosophy of autism is, therefore, a question of framework. As Collier (1994) highlights, it is important to consider the metatheoretical aspects of the work of scientists who are explicitly interested in their discipline which they often “ do not need to make explicit and may not even suspect that they use .” This pursuit is not concerned with how thorough someone has been in their attempt to do autism research, and indeed the idea that strict adherence to methodology is what produces good research can in itself be harmful ( Botha, 2021a ). Instead, it is about the underlying meaning behind those attempts and how they might frame research findings.…”