For 35 years, alumna Lucy Jane Miller (PhD ’86) has channeled her time, energy and imagination into advancing our understanding of a much-misunderstood disorder that has long befuddled the medical and education communities.
Founder and executive director of the Colorado-based Sensory Processing Disorder Foundation, Miller is regarded as one of the country’s foremost experts on the perplexing condition. As her foundation’s website explains, sensory processing disorder, or SPD, “is a condition that exists when sensory signals don’t get organized into appropriate responses.” In other words, it’s a failure of the nervous system to convert messages from the senses into appropriate motor and behavioral responses. People with SPD may demonstrate motor clumsiness, behavioral problems, anxiety, depression and academic failure.
The DU community—and the public at large—will have the chance to learn more about SPD when Miller speaks at the Morgridge College of Education Alumni Board’s Winter Signature Event on Thursday, Jan. 26, in Ruffatto Hall. A reception begins at 6 p.m., with the presentation to follow at 6:45. (To RSVP, visit http://www.alumni.du.edu/lucymiller.)
Miller’s talk, “Sensory Processing Disorder: Persistence and Passion; Caring for Individuals With Challenges in Responding to Sensation,” will address her decades-long campaign to demystify SPD and to help the children and adults who confront it.
In addition to publishing extensively, supporting SPD-related research and developing assessment tools that help professionals identify the disorder, Miller has worked tirelessly to get SPD recognized as a distinct diagnostic entity. Too often, she says, the disorder is misdiagnosed as a behavior problem or identified as a subcategory of autism. True, people with autism almost always have sensory challenges, she notes, but plenty of people with SPD do not have autism.
Thanks to Miller’s efforts, SPD has been included in two diagnostic manuals. More important, she adds, it is under consideration for inclusion in the 2013 revision of the granddaddy of all references, the Diagnostic and Statistical Manual (DSM).
Should this happen, it will represent the breakthrough Miller has been pursuing for decades. Inclusion in the manual will introduce the disorder to physicians who may never have heard of it, thus reducing the chance of misdiagnosis. Too few health care professionals, Miller explains, know how to recognize, much less treat, sensory issues. A DSM listing also could lead to additional funding for research.
Miller traces her interest in sensory processing disorder to a transformative experience in her teenage years.
“When I was 16, I developed an eye disease,” she recalls, noting that, as the disease progressed, she lost her vision, learned to live with the disability and eventually, at age 20, benefited from transplant surgery that restored her sight. Along the way, she drew upon enhanced senses to help her navigate the world. She also learned a lot about how patients experience treatment.
During her hospitalization for the transplant procedure, her eyes generated a lot of interest among the treatment team. “People kept coming over and looking at my eyes—the doctors, nurses, therapists,” she says. “But nobody cared about me.”
Troubled by her stint as an object of curiosity and acutely aware of a new relationship with her senses, she redirected her career plans. “Instead of going into law,” she explains, “I went to (occupational therapy) school.”
During the course of her studies, she worked with A. Jean Ayres, a pioneer in sensory integration studies. Fascinated by Ayres’ contributions, Miller decided to focus her own studies on SPD. Since then, she and her foundation have partnered with researchers at some of the country’s leading institutions—including Harvard, Yale, the Massachusetts Institute of Technology and Duke. As a result, information about SPD has grown enormously.
“We now have brain-imaging research that shows that SPD kids are neurologically different,” she says.
Looking to the future, Miller hopes that growing awareness will do for SPD what increased exposure did for autism and post-traumatic stress disorder (PTSD). Just 15 years ago, the medical community knew little about PTSD, but after the disorder was added to the DSM, it became an ordinary word in day-to-day language. Today, physicians and researchers are developing new therapies that make a tangible difference in PTSD treatment.
“I’ve given my life to this disorder,” she says of SPD. And she hasn’t stopped giving yet.