The final push is under way to get sensory processing disorder (SPD) included in the newest Diagnostic and Statistical Manual (DSM-V), the book that classifies official mental health diagnoses for physicians and third-party payers.

It's been an uphill battle. Early next year the Sensory Processing Disorder Foundation (SPDF) needs to update its 2007 application, which is now under review by the DSM-V Task Force's Disorders of Childhood and Adolescence work committee, 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.

Thirteen months ago, the committee asked the foundation for a significant number of additional studies to close the science gap it feels exists between what the foundation knows about the disorder at this point and what it needs to know to make the manual. Basically, it's up to the applicants to show that SPD is a disorder in itself and not just a component of other mental health diagnoses. The SPD Foundation (SPDF), headquartered in Colorado, has been attempting to raise $500,000 to finish the necessary work.

According to Doris Fuller, outreach coordinator, the foundation established five research goals it calls "the big five" to answer questions the DSM-V Task Force still has about SPD. These were five studies that would be feasible for the non-profit organization to conduct in the time available before the committee completed its deliberations in 2010. 

Here's the status of The Big Five:

• Analysis of the data from Alice Carter's epidemiological studies of children in greater New Haven, CT. Carter was able to get an existing National Institutes of Health (NIH) grant expanded to analyze this data for the DSM initiative. She plans to have four clinical articles published by the time the foundation resubmits the application for diagnostic approval to the DSM committee in 2010. Of special interest, she has found that 16.5 percent of the children in her study had significant sensory symptoms. Further, her findings linked the sensory problems to functional problems, such as social-skill and academic deficits. This number is significantly higher than the 5 percent incidence of SPD that the SPDF's own pilot study of parent reports found; it indicates that SPD may be even more prevalent.

• Analysis of the data from Dr. H. Hill Goldsmith's longitudinal study of 2,500 twins born from 1992 through 2001 in Wisconsin. Conducted within the OT department of the University of Wisconsin, this analysis was the first study to explore whether twins identified with sensory symptoms but no other psychopathology can be discriminated from typically developing twins based on videotaped ratings of behaviors. Findings are expected to be published late in 2009 or early in 2010.

• Finishing the "gold-standard" performance assessment for evaluating sensory processing across all seven sensory systems. This scale that Lucy Jane Miller and Sarah A. Schoen started several years ago has been expanded to include over- and under-responsivity and sensory seeking. Findings on the sensory over-responsivity items in the scale were published last summer in the American Journal of Occupational Therapy (AJOT). Findings validating the three subtypes of sensory modulation disorder using the Sensory Processing Scale checklist are expected to be published later this year.

• Identifying "pure" case studies of children who meet the criteria for SPD and in whom other disorders have been ruled out. A team from the University of Colorado medical school has donated its time and facilities to providing comprehensive pediatric, psychiatric and psychological assessment of 5-10 individual cases. This work is in process.

• Identification of neurobiological markers that discriminate SPD from controls. Findings about typically developing children were published in Brain Science in January. Preliminary findings show that children with SPD integrate multisensory information differently than typically developing children. A paper has just been submitted for publication.

Education and Fundraising

SPDF is using two basic tools to spread knowledge of SPD and raise money for more research. The foundation has put together an e-learning "campus" and is about to offer its first online program, an introductory course in sensory processing taught by Lucy Jane Miller, PhD, OTR, the foremost SPD researcher in the U.S. Miller's course will cover an overview of sensory processing disorder as well as sensory over- and under-responsiveness and sensory seeking. It's $249 for standard tuition; foundation members receive a $50 discount.

For information or to register, go to www.spdfoundation.net/elearn/index.html.

SPDF also will hold its 9th International Symposium, Oct. 9-10 at the Westin Chicago North Shore hotel in Wheeling, IL. For information and registration, go to www.spdfoundation.net/symposiumchicago/index.html.

Sign the Petition

The foundation is also seeking 20,000 professionals and advocates to sign an online petition to the DSM-V Task Force supporting SPD's inclusion the DSM-V. So far there are more than 1,000 signers, divided into personal advocates and health care professionals, who are expected to provide more influence due to their medical backgrounds. To sign the petition, go to www.spdfoundation.net/petition.php.

E.J. Brown is editor of ADVANCE.