The Disorder Is Sensory; the Diagnosis, Elusive

Taken from the New York Times

DENVER — Almost every parent of young children has heard an anguished cry or two (or 200) something like:
Kevin Moloney for The New York Times

“This shirt is scratchy, this shirt is scratchy, get it off!”
“This oatmeal smells like poison, it’s poisonous!”
“My feet are hot, my feet are hot, my feet are boiling!”
Such bizarre, seemingly overblown reactions to everyday sensations can end in tears, parents know, or escalate into the sort of tantrum that brings neighbors to the door asking whether everything’s all right.
Usually, it is. The world for young children is still raw, an acid bath of strange sights, smells and sounds, and it can take time to get used to it.
Yet for decades some therapists have argued that there are youngsters who do not adjust at all, or at least not normally. They remain oversensitive, continually recoiling from the world, or undersensitive, banging into things, duck-walking through the day as if not entirely aware of their surroundings.
The problem, these therapists say, is in the brain, which is not properly integrating the onslaught of information coming through the senses, often causing anxiety, tantrums and problems in the classroom. Such difficulties, while common in children with developmental disorders like autism, also occur on their own in many otherwise healthy youngsters, they say.
No one has a standard diagnostic test for these sensory integration problems, nor any idea of what might be happening in the brain. Indeed, a diagnosis of such problems is not yet generally accepted. Nor is there evidence to guide treatment, which makes many doctors, if they have heard of sensory problems at all, skeptical of the diagnosis.
Yet in some urban and suburban school districts across the county, talk of sensory integration has become part of the special-needs vernacular, along with attention deficit disorder and developmental delays. Though reliable figures for diagnosis rates are not available, the number of parent groups devoted to sensory problems has more than tripled in the last few years, to 55 nationwide.
And now this subculture wants membership in mainstream medicine. This year, for the first time, therapists and researchers petitioned the American Psychiatric Association to include “sensory processing disorder” in its influential guidebook of disorders, the Diagnostic and Statistical Manual. Official recognition would bring desperately needed research, they say, as well as more complete coverage for treatment, which can run to more than $10,000 a year.
But many psychiatrists, pediatricians, family doctors and school officials fear that if validated, sensory processing disorder could become rampant — a vague diagnosis that could stick insurers and strapped school districts with enormous bills for unproven therapies. The decision is not expected for three or four years, but the controversy is well under way.
“There’s a real resistance to recognizing this, and you can see why, because you’re introducing a whole new vocabulary,” said Dr. Randi Hagerman, a developmental-behavioral pediatrician who is medical director of the MIND Institute at the University of California, Davis. Dr. Hagerman added, “Many of the behavioral difficulties that are being labeled today as anxiety or A.D.H.D., for instance, may be due to sensory disorders, and that forces you to rethink the treatments,” as well as diagnoses. Everyone seems to agree that sensory problems are real and disabling in children with diagnoses like autism or Fragile X Syndrome, a genetic disorder that causes social difficulties and learning delays.
Most youngsters with these diagnoses react strongly to certain sounds, textures or other sensations — or appear unusually numb to sensory stimulation. They may gag at the mere whiff of common smells, or cry out when touched. They may spin or flap their arms as if seeking stimulation (or, in some cases, to relieve pain). Children with attention deficit disorders, too, frequently appear to have unusual sensitivities.
A common treatment for sensory symptoms is occupational therapy. For these children the therapy typically involves activities and games, guided by a therapist, intended to make the youngsters more comfortable as they engage the sensations that disturb them — or more alert to those they usually do not notice.
It was a California occupational therapist and psychologist named A. Jean Ayres who, in a widely read 1972 book, first argued that sensory problems were more than symptoms of other disorders. They were the primary cause of many motor and behavioral problems, she argued, and far more common than doctors recognized.

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