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Lumen Scholar traces the history of mental illness guide

The Diagnostic and Statistical Manual of Mental Disorders is the nation’s most recognized resource for classifying conditions like depression and anxiety, but through five editions and half a century, its self-professed raison d'être continues to evolve. Elon University senior Kelsey O’Connell set out to learn “why,” and more importantly, she wanted to pinpoint “how.”

Elon University senior Kelsey O'Connell (right) with her Lumen Prize mentor, Associate Professor Rebecca Pope-Ruark

How do psychiatrists, social workers and researchers join together to produce a single book that sorts and categorizes all possible mental health diagnoses, an effort that will impact millions of people for years to come? And why is such a manual needed in the first place?

When it comes to the American Psychiatric Association’s “Diagnostic and Statistical Manual of Mental Disorders,” an exhaustive guide to classifying and identifying conditions such as schizophrenia and mood disorders, the answers to those two questions - both of which have shifted over the past half century - hold a potential key to understanding public attitudes toward mental illness in the United States.

And the first place to look for answers is in the opening pages of the manual itself.

Elon University senior Kelsey O’Connell has spent two years studying the evolution of the “Diagnostic and Statistical Manual of Mental Disorders” forewords in its five editions to date. Her work has already been shared with the APA, and just this spring she traveled to Italy to present her findings at the Association of Business Communication’s Europe Symposium.

O’Connell’s journey is the latest to be featured on E-net this year in a series of profiles on Lumen Scholars in the Class of 2014.

“The DSM is so often compared to a ‘God’ text, the ‘Bible of psychiatry,’ because it influences so much,” she said. “I started to view the foreword as a ‘creation story’ of the manual.”

First published in 1952, the DSM was a response by the mental health community to the widespread post-traumatic stress disorders found in returning World War II veterans. Psychiatrists lacked the nomenclature to classify the disorder, and in a broader sense, concern was already developing that two doctors could independently diagnose the same patient with different conditions.

Common language for clinicians to communicate about patients and aid in the development of medications or therapies is another reason the American Psychiatric Association cites for creating and updating the manual.

In the foreword of the original manual, authors justified the guide’s existence and explained how standard language and criteria was crucial to advance the discipline. By the third edition, rather than explain the need for a manual, the authors of the DSM foreword began to use language that was technical in nature to justify the standardization of diagnoses based on symptoms.

O’Connell had a rare opportunity during her research to observe the way the latest edition of the manual took form before its publication in 2013. For the first time in the manual’s history, the American Psychiatric Association sought suggestions and input from all members of the mental health community, from providers to social service workers. It was a controversial move that led to strong disagreements with the finished product.

Most notably, the individual diagnosis of “Asperger syndrome” vanished from the manual, and was integrated into the new Autism Spectrum Disorders. O’Connell is quick to show how a previous diagnosis that no longer appears in the DSM has far-reaching implications. In the case of Asperger syndrome, the fear was that the change in language would change the coverage. Conditions not listed in the DSM typically aren’t covered by insurance.

“Once insurance says it won’t cover something,” she said, “they won’t cover it.”

But words can also have deeper meaning, O’Connell said. The DSM shapes public perception of any given trait or condition and, in initial editions, lent credence to the idea that some human characteristics - for instance, homosexuality - were medical diagnoses. For gays and lesbians, the characterization was a huge obstacle as they battled the stigma that sexual orientation could be treated or “fixed.”

The English major also cites personal experience with depression. As a middle school student, some friends and teachers failed to understand how depression is simply a medical diagnosis like any other condition that needs to be managed.

“Telling someone with depression to just ‘snap out of it’ is not OK,” O’Connell said. “It’s like telling someone with cancer just not to have cancer. It’s an illness. It’s not a choice and it’s not laziness.”

The Lumen Prize, awarded for the first time in 2008, provides selected students with a $15,000 scholarship to support and celebrate their academic and creative achievements. Lumen Scholars work closely with faculty mentors to pursue and complete their projects.

Efforts include course work, study abroad, research both on campus and abroad during the regular academic year and summers, internships locally and abroad, program development and creative productions and performances.

“Kelsey’s project followed the model of good qualitative research in which you don’t go into the project knowing exactly what you will look for, but instead use the research process to let the patterns emerge,” said Associate Professor Rebecca Pope-Ruark, O’Connell’s Lumen Prize mentor. “In doing so, we found the creation story angle that became the center of her work. Kelsey was always interested in the community creation and reactions to the DSM, so it was great to watch her develop her own theories about this text and its place in the psychiatric community.

“Her work into how the forewords of the DSM manuals constitute community creation stories is innovative and important, especially as our discipline begins to pay more and more attention to medical and health rhetorics.”

O’Connell praised for Pope-Ruark for helping to guide her through her research. “She’s great. She knows me well and does everything a mentor should do,” O’Connell said. “She’s very good at brainstorming and coming up with ideas on disseminating the research and is as interested in this as I am.”

Outside of her Lumen Prize work, O’Connell has been active with the Elon Mock Trial Team and the Sigma Tau Delta academic honor society. With graduation less than two months away, the native of Ashburn, Va., has been accepted into a graduate school program for publishing at Columbia University in New York City.

She’ll leave Elon University knowing her two years of undergraduate research has made a difference.

“The mental health care community did not ask me to do this study but I was still able to present this important information at conferences,” O’Connell said. “I can do rhetorical analysis, but in the end, if no one reads it, it’s not worth it.”

Eric Townsend,
4/13/2014 10:00 AM