Investigating the Language Surrounding Autism

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From physics at MIT, to a career in cyber security, and then to studying human society, Helene Grogan is a scientist advocating for autism awareness through her research in the Department of Sociology. She now focuses her efforts on investigating the language and implications of the term “autism prevention” in a government forum. Her work is imperative for self-advocacy of marginalized groups in the political realm. 

In Grogan’s early 40’s she received a formal diagnosis of autism. “The definition of what autism means clinically and socially has changed drastically over the years, which created a challenge for women and non-binary people to receive a diagnosis early in their life.”  

This social challenge is what inspired Grogan to continue her academic career and investigate biopolitics, the regulation and ‘optimization’ of life based on biological traits. One aspect of her research is studying the language surrounding autism in established groups. “How is autism described? Who becomes an expert? What are the roles of the government, self-advocates, family members, and the general public?” She tackles the issues of power, knowledge, and interaction between groups.  

Grogan’s work is imperative for marginalized groups because her research highlights the self-advocacy lost in government forums, specifically the Interagency Autism Coordinating Committee (IACC). Established in 2000 and expanded in 2006, the IACC is a United States federal advisory panel in the Department of Health and Human Services. The primary objective of the IACC is to advise on autism research and support in federal and state agencies. The IACC committee includes federal employees, parents, and self-advocates; however, not all voices are held equal in the meetings.  

“Over the 10 years I studied, the government IACC’s language surrounding autism shifted,” explains Grogan. The IACC’s language has changed over time, beginning with autism “prevention,” shifting to the ethical challenges of the ideology behind “prevention,” and lastly modifying the language of their goals but not the original purpose of the committee. These conflicting conceptions of autism led to conflicting biological citizenship, the relationship between politics, identity, and biology, claims concerning the value of “prevention.”  

Grogan has meticulously analyzed the IACC meeting transcripts, focusing on the often-conflicting ways in which self-advocates and parents interpreted autism. She examined transcripts spanning 10 years, which quickly became overwhelming given their broad scope. To address this challenge, she used a targeted investigation technique to search for discussions related to “autism prevention,” and read through those to understand how conflicting concepts of autism influenced the committee’s approach to the so-called “epidemic.”  

From these transcript snips, she is able to read targeted sections that are related to her research question: “How did this change in prevention language happen, and what role did autistic self-advocates play?” A major finding of her work highlighted the raising concerns of ethics and eugenics. “Ignoring these concerns greatly undermines the experience of self-advocates. When are we going to pay attention to the perspectives of the people who are being talked about and not being talked to?” 

Grogan emphasizes, “Even though the language of the committee changed, the standing goals still implied that autism is an epidemic, a spread of a disease, and by viewing autism as a disease, it positions it as something dangerous, invasive, and harmful.”  

This process highlights the importance of language in biological citizenship claims, as well as the persistence of the State’s view of disability as unacceptable and in need of correction. Her research emphasizes a common issue in the disability community with many self-advocates losing their voice. “The government has created this space that tends to sideline self-advocates, even though they are the heart of the conversation,” says Grogan. 

Grogan is continuously fascinated and surprised by her research. Learning about autism and its influence on her life has opened up an endless area of discovery. She now appreciates her own ability to look at her experience and view the world in a unique way.  Her story started at MIT with a physics degree in the early 90s, but she discovered she didn’t love that field. She then worked in cyber security until her late 40s, when she faced a career burn-out. She finally landed as a graduate student in Sociology, where she can study a topic that pushes for self-advocacy in the political dimension. She finds her unconventional path rewarding—she is finally able to put what she has been feeling her entire life into words and make a difference in the community.  

Grogan is working on a manuscript, “Prevention of What? Competing Biology Citizenship Claims and the Biopolitics of Autism Prevention,” that she will soon submit for publication. She was awarded the NSF Graduate Research Fellowship in recognition of her previous experience and promise as a researcher.  

Written by Alexa Hershberger, PhD student in Organismic & Evolutionary Biology, as part of the Graduate School's Public Writing Fellows Program.