Bioethics Blogs

Disease or Diversity: Learning from Autism

by Jillybeth Burgado

The following post is part of a special series emerging from Contemporary Issues in Neuroethics, a graduate-level course out of Emory University’s Center for Ethics. Jillybeth is a senior undergraduate double majoring in neuroscience and behavioral biology and religion. She hopes to pursue a PhD in neuroscience after working as a research assistant after graduation.

Chipmunka Publishing 

The idea that variation in behaviors arises through natural differences in our genome was popularized in the 1990s and termed “neurodiversity.” Led in large part by autism spectrum disorder (autism) activists, this movement challenged the established notions of autism as a disease that needed to be eradicated, championing the acceptance of a wide array of neural differences in the population. Rejecting terms such as “normal,” proponents of neurodiversity questioned common messaging and goals of research organizations (e.g. autism is not something that needs to be eradicated or “cured”). In this post, I briefly summarize the neuroethical concerns of ground-breaking neuroscience research, with particular focus on autism diagnostic research. I will then introduce a less well-known movement, Mad Pride, and discuss how we can apply some of the concepts and lessons from the autism and neurodiversity movements to understand and evaluate the claims of those involved with Mad Pride.

Autism is a developmental disorder characterized by challenges with social interactions as well as with verbal and nonverbal communication (Walsh et al., 2011). Importantly, autistic phenotypes are quite diverse, making diagnosing individuals a difficult task. Patients are typically diagnosed by psychiatrists who employ screening tools, such as the Modified Checklist of Autism in Toddler (M-CHAT), and psychological interviews and exams that evaluate the development of speech, social, and intellectual behaviors.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.