Though they have been racing against the clock for the past eight years, doctors, psychologists and occupational therapists still need to do an estimated half-million dollars or more of research before January 2010 if they want to add sensory-processing disorder (SPD) as a recognized diagnosis or underlying condition to the next edition of the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-V) due in 2012.

The manual is the official diagnostic tool used in mental health practice. Because SPD is not on its pages, major grant monies for continuing research in the field are not available, and insurers often will not pay for treatment. Getting into the manual will open those doors. It also would put pediatric occupational therapy on a stronger footing financially.

It's not the Centennial Vision that's on Lucy Jane Miller's mind, however. The founder and director of the SPD Foundation would like to see decades of hard research pay off for the good of young patients who don't always get the treatment she believes could most help them.

The foundation has been working on this project for the past eight years. In January 2007, the organization sent its first-stage application to the DSM-V committee of the American Psychiatric Association. "It was a one-page application with 60 pages of index," Miller told ADVANCE recently. "We submitted a supplement [to the application] last March to bring the research up to date."

The application is being reviewed by the Disorders of Childhood and -Adolescence work committee of the DSM-V Task Force, a 10-member group of MDs and PhDs under the direction of Daniel Pine, MD. Pine is chief of several sections on child neuroscience and psychiatry for the National Institute of Mental Health Intramural Research Program.

In April, Pine wrote a "lengthy and extremely detailed" letter back, asking for a "significant number" of additional studies for which the committee would look. "A great deal of hard work obviously remains to be done, and the resources available to underwrite it are not currently sufficient," states the SPD Foundation Web site. "Nonetheless, we are encouraged that the committee is taking our application very seriously."

Michael B. First, MD, editor of the DSM-IV and a professor of clinical psychiatry at Columbia University, has noted four types of data that would be applicable to SPD:

• evidence that SPD describes a condition not adequately covered by an existing disorder,

• its diagnostic markers,

• evidence that supports treatment options,

• evidence that including SPD would not result in a high rate of false-positive diagnoses.

Miller, whose team has been researching the disorder since 1974, has plenty of studies available, though they are not necessarily focused on what the committee wants to see. Over the past few years, more of those have been coming in. In 2004, Miller, then a professor of pediatric OT and rehab at the University of Colorado Medical School, established the SPD Scientific Work Group, an interdisciplinary council of scientists who have been conducting research into the "etiology, neuropathology, signs and symptoms, treatment effectiveness, and developmental trajectories of SPD."

Two grants from the National Institutes of Health (NIH) have boosted the effort. One was an NIH Career Award for a randomized controlled study of the effectiveness of OT to treat SPD. "The second award," the Web site explains, "was an NIH planning grant to establish a group of advanced occupational therapists to develop a multi-site treatment effectiveness study. This group is known as the Sensory Integration Research Collaborative."

Miller is counting on two recent studies to demonstrate the independent existence of SPD. Hill Goldsmith, a professor at the University of Wisconsin, recently completed a large study of tactile and auditory defensiveness in toddler-aged twins. The study showed that both symptoms were associated with fearful, anxious temperament, and that the traits were moderately genetic.

Miller is meeting with Goldsmith this month to try to identify, by observation, which children in his many videos have sensory-processing problems.

The other issue has to do with the effects of SPD on behavior. "We need to show that these children will have functional impairments later on because of their SPD." Miller is hoping that research done by University of Massachusetts psychology professor Alice Carter over the past seven years with an SPD population in New Haven, CT, will make that evident.

E.J. Brown is editor of ADVANCE.

How You Can Help
The foundation is creating on-demand e-learning courses to help raise the money to finish its research. You can help create the courses by sending video clips of children that illustrate problems resulting from sensory challenges to Susanne Geiler at Susanne@SPDFoundation.net.

For more information on submitting videos, visit www.spdfoundation.net/advocacy.html.