May 28, 2012— -- Woody Sims was a gifted boy. His mother said he began reading at a very early age, and he was a bright student in preschool.
To those around him, his development in his early years seemed normal. But in his college essay, Woody, now 18 years old, described a childhood experience marked by "deep fears of loud noises, cooked carrots and handwriting.
"I was over-stimulated, which meant I couldn't handle certain textures, and freaked out at loud noises," Woody wrote in his essay. "I also had problems managing tasks with multi-sensory inputs, like handwriting and catching a ball. These sensory problems meant that sports, driving, and concerts would all be things I couldn't ever do or see without a great deal of difficulty."
For Woody, the diagnosis of sensory processing disorder, or SPD for short, came very early, at age 4. His mother, Pam Sims, had arranged for him to be tested for his school's gifted program. It was the tester who informed her that he believed her son fit the bill for the disorder.
"We thought his physical development stuff was more related to his height," said Pam Sims, now 52, of Denver, Colo. "We didn't know anything about sensory processing disorder."
In a coincidence that Pam Sims calls a "luck of the draw," a center devoted to the research and treatment of this disorder happened to be located in Denver, where they live. It was here, at the STAR Center, that Woody engaged in sensory-based therapies aimed at improving his coordination and social and interactive therapies to help him deal with stimuli in his environment that he found harsh and jarring.
"It is amazing what it did for him," Pam Sims said. "As time went on, we had more treatments. We stopped when he was about 7 or 8 years old, as he had learned to regulate himself."
Stories like Woody's appear to support the existence of SPD -- and there are many such stories. Nevertheless, solid research confirming the existence of SPD is in far shorter supply, many in the medical community say. And on Monday, it would seem that new recommendations from the American Academy of Pediatrics have dealt another blow to the legitimacy of SPD. Specifically, the AAP recommends, "At this time, pediatricians should not use sensory processing disorder as a diagnosis."
The recommendations also suggest to pediatricians that they inform families that the evidence for sensory-based therapies is limited and that outcomes from these therapies should be monitored closely.
"I think the academy statement reinforces the decision that there is not enough information at this time to conclude that this is a distinct disorder," said Dr. Michelle Zimmer, a professor in the UC Department of Pediatrics and a lead author of the recommendations. "Moving forward, there needs to be a lot more research in this field."
Dr. Larry Desch, director of developmental pediatrics at Advocate Health Care and also a lead author on the recommendations, said that he did not anticipate that the recommendation would be well-received among parents and doctors who believe sensory processing disorder should have its own place as an official condition.
"I think they'll be unhappy, some of them," he said. "But I'm hoping it will lead to more research studies being done."
Dr. Lucy Miller, founder and executive director of the STAR Center Foundation, where Woody received treatment, said she, too, hopes the recommendations will lead to more research. But she said that there is no doubt in her mind that SPD is a distinct condition.
"There is an unbelievable amount of evidence not cited in [the recommendations]," Miller said, adding that much of the most recent research "just has not hit the mainstream pediatrics literature yet."
Miller agreed that more research is needed to further define the condition and those who suffer from it. But based on two studies that have looked at its prevalence, she estimated that 1 in 10 children may experience it to some degree -- maybe more.
But in light of the current research, SPD seems a tough sell.
"There is more that is anecdotal than anything else," Desch said. "There were a lot of problems with studies."
It probably doesn't help that the signs of SPD are a mixed bag. For some, it takes the form of an aversion to loud noises, rough textures in clothing and the taste and textures of certain foods. It is also said to manifest itself in what are known as "vestibular" effects -- poor balance, clumsiness and a delay in milestones such as learning to walk and talk. Some appear overstimulated by the world around them. Others are understimulated.
And then there is the treatment, part of which involves what is known as sensory integration therapy. This therapy is aimed at improving a child's ability to correctly process the stimulation he or she receives from surroundings. This usually means modifying the stimuli to which these children are exposed using swings, unstable platforms, weighted vests and a vast array of other equipment.
It is this therapy that the AAP recommendations singled out, encouraging pediatricians to "communicate with families about the limited data" on its use.
Critics of sensory integration therapy point out that the sensory issues targeted are signs of an underlying condition -- and that focusing on these symptoms ignores the larger problem, be it autism, ADHD or something else.
"Our concern is if children are being diagnosed with sensory processing disorder but we're really missing the big picture -- if it is something that is truly ADHD, autism or anxiety," Zimmer said. She added that if doctors focus solely on sensory integration therapy, "we're missing the other components of treatment that could help them."
But, Miller argued, the therapy has evolved drastically from its origins in the 1970s. She also said the AAP recommendation ignores the other, newer therapies for sensory processing disorder -- approaches that emphasize social participation and require that relationships and engagement be a priority of the treatment.
Still, the generally lukewarm assessment of the studies published to date suggests the broader medical community has not yet recognized the existence of this disorder as a standalone condition, and it is even less convinced of the legitimacy of its treatment. As a result, few insurance companies cover the therapies.
This can make this therapy an expensive proposition for parents. Pam Sims says Woody's treatment cost about $100 per hour and was not covered by the family's health insurance.
"I think that the cost prevents some people getting treatment they need," she said.
The insurance situation is just one of the things that proponents of sensory processing disorder hope to change. They have pushed for the inclusion of sensory processing disorder in the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5, expected to be released next year. The DSM is considered to be the authoritative compendium of psychiatric disorders, and a place in its pages would mean that sensory processing disorder would become an official diagnosis. By extension, sensory-integration therapies would get a much-needed boost in credibility.
Whether or not the AAP's policy statement will undermine those efforts remains to be seen. Miller said she has already been told that the DSM-5 will not list SPD as a new diagnosis. She believes that it will get a mention as a sub-criterion for autism spectrum disorder. But what she is holding out hope for now is that it will be included at the end of the manual, as a novel diagnosis in need of research.
Miller said that she does not believe that the AAP recommendation will necessarily hurt the chances that SPD will find its way in as a novel diagnosis. And she said that right now, she will take any additional placement SPD can get.
"We would be thrilled to see it represented in any way, which would be a foot in the door," she said. "Right now, it is very difficult to get funded by NIH, because it is not in the DSM. It's very difficult to get it into the DSM, because there is no funding for research. It's a catch-22."
Even the authors of the new AAP recommendations appear to agree that more solid research on SPD would be a welcome development. And Zimmer said that despite the fact that one of the new recommendations explicitly urges caution with sensory integration therapy, she does not feel that this means the approach has no place in treatment.
"Certainly I think sensory-based therapies can be helpful," she said. "But these treatments have to be done on an individualized basis. It should be one component of a more global treatment program."
She said parents should consult their pediatricians if they are considering sensory-based therapies, and they should set out a specific period of time with a specific goal in mind -- a measurable reduction in episodes involving behaviors associated with oversensitivity, for example. She said that parents should then monitor their child's progress to see if these goals are being met. If not, she said, treatment should be discontinued.
"I don't think the academy is suggesting that [sensory-based therapies] should stop," she said. "But they should be one small component of a larger treatment approach."
Dr. Richard Besser, ABC News' chief health and medical editor and a pediatrician himself, agreed.
"It is so important that parents talk with their child's doctor openly about treatment options," he said. "Sometimes, there are treatments that lack scientific evidence because they are new and innovative. As long as they are safe, it may be worth undertaking in particular situations. However, as studies are done, doctors need to be open with their patients to let them know the findings."