Vol. 21 • Issue 12 • Page 14
It has been almost 21 years since the December day in 1988 when one of occupational therapy's most revered educators and researchers, Alma Jean Ayres Baker, died in California. She was only 68 years old.
Ayres, always known simply as Jean, left thousands of sorrowing professional colleagues with the cornerstone of a theory grounded in neurodevelopment that would soon become one of their greatest triumphs-and biggest stumbling blocks-in the field of pediatrics.
Even Ayres admitted that she hadn't yet learned much of what there was to know about "sensory integration." But she believed that in order to fully develop both motor and cognitive skills, the human brain has to internally digest and route (process) continuing feedback from all the senses, particularly tactile, proprioceptive and vestibular. If some of that input goes missing or is misrouted, brain circuitry becomes mixed up; and that can slow gross- and fine-motor maturation and delay cognitive development as well. These problems can manifest in many ways, from clumsiness to dyslexia to poor math skills.
The American Medical Association refuted the idea totally. So did many occupational therapists. Ayres spent more than 20 years dealing with widespread rejection of her theory.
But 40 years after her work began, Ayres soon may be vindicated. Early in 2010 the American Psychiatric Association could very well accept sensory processing disorder into the fifth edition of its Diagnostic and Statistical Manual (DSM-V) of mental conditions as a "novel diagnostic entity" that deserves more study. The manual will be published in 2012, but all diagnoses for which there will be field trials had a deadline for submission this summer.
Inclusion in the DSM-V is a big step toward getting SPD recognized eventually as a stand-alone diagnosis that is not simply part of a syndrome or of another disorder. It's far from a done deal, but researchers are highly encouraged. And chief among them is Lucy Jane Miller, PhD, OTR, the foremost sensory processing researcher in the country for the past 30 years.
Miller is founder and executive director of the Sensory Processing Disorder Foundation, based outside Denver, the hub of the research effort, coordinating trials going on at major universities in the United States and Canada. The foundation connects a growing web of physicians, psychiatrists, special educators and occupational therapists who are turning Jean Ayres' beliefs into facts. Both the level and quantity of their research has been quietly bringing sensory processing disorder into the mainstream.
But the sensory integration issue is two pronged. Even if the DSM-V accepts sensory processing disorder as a condition that deserves more attention over the next decade, that will not necessarily justify sensory-based treatment modalities, the approaches clinicians use to treat the disorder. Just three years ago Aetna notified providers that it had no evidence that such approaches worked any better than others already out there on children with such symptoms. At the time, Blue Cross considered them "experimental."
Because SPD symptoms also exist in kids with other diagnoses, there are codes under which its use for those children can be, and often is, reimbursed, even by Aetna. And within the past three years, two other organizations have accepted sensory-based diagnostic taxonomies. The Interdisciplinary Council on Developmental and Learning Disorders (ICDL), founded by Floortime™ creator Dr. Stanley Greenspan, and Zero to Three, a non-profit cooperative of early childhood developmental experts and parents, do their own research and create their own standards.
But SPD's status with mainstream pediatricians has been tenuous. Unless they were involved with children with disabilities, these doctors knew little about SPD science, much of which is housed in the realm of behavioral medicine. Apparently that has changed.
This past summer researchers were happily surprised to find physicians testifying to both the existence of the disorder in their young patients and the effectivness of OT treatment techniques.
Late in July the DSM Task Force notified its applicants that if a new disorder wanted to be considered for field testing, the final report to the committee would have to be turned in early-in August instead of next January, as had been expected. So it was asking organizations due to submit their final research at the end of this year, to send it in, even if it was as yet unpublished. The SPDF sent an online survey by e-blast to occupational therapists and parents around the country to get it into the hands of physicians with whom they work or who provide direct primary care to children.
Some 423 complete responses came in from doctors in 44 states and 26 other countries within two weeks. Pediatricians represented 56 percent of the sample. Another 15 percent were psychiatrists and still another, family-practice doctors. About 14 percent were from specialties such as neurology or internal medicine.
Ninety-three percent of those respondents had heard of sensory processing disorder, and 47 percent said they were "very knowledgeable" about it, rating that knowledge as 4 to 5 on a 1-5 Likert scale. Only about a fourth said they had little or no knowledge of SPD.
After reading a list of symptoms that represented 11 different areas of sensory over- and under-responsiveness generally associated with SPD, 72 percent of the physicians indicated that they have had patients they would code with a primary diagnosis of sensory processing disorder who have no co-morbid diagnoses.
Most of the doctors reported over-responsiveness in some areas and under-responsiveness in others. Some 77 percent or more of respondents noted that their young patients over-responded to tactile and auditory stimuli, and to food tastes and textures. The most common under-responsive area was auditory.
Perhaps most interesting is that physicians identified many social and emotional problems in the kids they rated as having only an SPD diagnosis-things like emotional dysregulation, poor social participation, social avoidance and high anxiety, all of which correlated to impairments in such ADL as dressing, eating, tying shoes and toileting.
"It is definitely noteworthy that there was this much response in such a short time," the SPDF noted when it analyzed the data. "Perhaps the most important results from the survey relate to very strong physician consensus that the current DSM and International Classification of Diseases (ICD) do not have the appropriate diagnostic categories available for physicians to code patients exhibiting sensory processing disorder. When asked this question, 89 percent of physicians said current codes are not appropriate for their current SPD patients."
But what may electrify OTs is that more than two-thirds of the doctors surveyed said they have referred patients with SPD to occupational therapists; 65 percent rated the therapy at the highest--between 4 and 5 on the scale--for its effectiveness.
The research that Miller and her colleagues have produced is top notch. You can examine it at the SPD Foundation Web site at www.spdfoundation.net. One of the best testaments to it can be found in a communication the DSM-V Task Group sent the foundation last July, when it notified the SPDF that its preliminary scientific report submitted between last January and April "...received an in-depth evaluation (which is a testament to the amount and quality of the data)..." and is being considered for the new novel diagnostic category, a new feature beyond the "main body" that contains diagnoses that need more research. Sensory processing disorder is on this list.
Disorders published here are much more likely to receive further research funding and be noted positively by third-party payers.
The important task, in order to establish "sensory processing disorder" or SPD as a differential diagnosis, is to verify that it exists in people who have no other psychopathology. That has been difficult to prove. It is often associated with Tourette syndrome, autism spectrum disorders, ADHD and OCD. But Harvard Medical School professor and genetics researcher David Pauls, PhD, says that there are high-end cases of over-responsiveness that stand alone, without any co-morbidities.
At the Sensory Processing Disorder Foundation Symposium held in Boston last fall, he actually foreshadowed what doctors who took the survey this past summer said they are seeing in the clinic. "Research shows there are people with pretty extreme behaviors with no other psychiatric diagnoses," Pauls said, "and we don't know at this point what is causing them. There is a significant underlying biological deficit. They would benefit from intervention."
Pauls is head of Massachusetts General Hospital's psychiatric and neurodevelopmental genetics unit, set up in 2001 under the hospital's center for human genetic research and department of psychiatry. He is the lead researcher in a continuing, two-pronged study, a Genetic Linkage Study of Tourette Syndrome, and a Family Linkage Study of TS, ADHD and OCD. Sensory issues were part of the studies.
"It's quite clear that there won't be a single gene connected with [SPD]," he told his audience of practitioners and educators. "[But] there are probably some underlying genetic factors that are contributing to these behaviors."
The factors that indicate this have been consistent in several studies done recently using parent-interview measurements across related and non-related groups of children. One showed inheritability to be possibly as high as 40 percent.
The Mass General/Harvard family genetics study looked at 110 families with 318 first-degree relatives who participated in full psychiatric interviews and offered symptom-specific information. Many families had several of the diagnoses. Researchers used Miller's Sensory Over-responsiveness Scale: Inventory and Sensory Over-Responsiveness Scale: Assessment, which is administered directly by a clinician. The scale, still in a research edition and not widely available, includes all seven sensory domains.
The sensory factors definitely were co-related among relatives, with a significant finding. On another scale, the Short Sensory Profile, the correlation was even higher.
"There is evidence that [sensory over-responsiveness] is familial," Pauls said.
He even noted that animal studies at the Harlow Primate Center at the University of Wisconsin, where he collaborates with occupational therapist and primate researcher Dr. Mary Schneider, have also found heritability of sensory defensiveness in Rhesus monkeys.
As to his own work, the more co-morbidities study subjects had, of course, the more different they were on sensory measures. "Sensory response to stimulus is under some sort of genetic influence," he concluded. But it is not completely genetic.
What this means clinically is that non-genetic and non-pharmacological intervention should work on sensory defensiveness.
OTs have long known that it does.
E.J. Brown is editor of ADVANCE.