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.

Fore more on this article
Taken from the New York Times

Published: December 17, 2008
The book is at least three years away from publication, but it is already stirring bitter debates over a new set of possible psychiatric disorders.

Brendan Smialowski for The New York Times
Dr. Darrel A. Regier is co-chairman of a panel compiling the latest Diagnostic and Statistical Manual of Mental Disorders.
A Growing List of Mental Ills

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Is compulsive shopping a mental problem? Do children who continually recoil from sights and sounds suffer from sensory problems — or just need extra attention? Should a fetish be considered a mental disorder, as many now are?
Panels of psychiatrists are hashing out just such questions, and their answers — to be published in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders — will have consequences for insurance reimbursement, research and individuals’ psychological identity for years to come.
The process has become such a contentious social and scientific exercise that for the first time the book’s publisher, the American Psychiatric Association, has required its contributors to sign a nondisclosure agreement.
The debate is particularly intense because the manual is both a medical guidebook and a cultural institution. It helps doctors make a diagnosis and provides insurance companies with diagnostic codes without which the insurers will not reimburse patients’ claims for treatment.
The manual — known by its initials and edition number, DSM-V — often organizes symptoms under an evocative name. Labels like obsessive-compulsive disorder have connotations in the wider culture and for an individual’s self-perception.
“This is not cardiology or nephrology, where the basic diseases are well known,” said Edward Shorter, a leading historian of psychiatry whose latest book, “Before Prozac,” is critical of the manual. “In psychiatry no one knows the causes of anything, so classification can be driven by all sorts of factors” — political, social and financial.
“What you have in the end,” Mr. Shorter said, “is this process of sorting the deck of symptoms into syndromes, and the outcome all depends on how the cards fall.”
Psychiatrists involved in preparing the new manual contend that it is too early to say for sure which cards will be added and which dropped.
The current edition of the manual, which was published in 2000, describes 283 disorders — about triple the number in the first edition, published in 1952.
The scientists updating the manual have been meeting in small groups focusing on categories like mood disorders and substance abuse — poring over the latest scientific studies to clarify what qualifies as a disorder and what might distinguish one disorder from another. They have much more work to do, members say, before providing recommendations to a 28-member panel that will gather in closed meetings to make the final editorial changes.
Experts say that some of the most crucial debates are likely to include gender identity, diagnoses of illness involving children, and addictions like shopping and eating.
“Many of these are going to involve huge fights, I expect,” said Dr. Michael First, a professor of psychiatry at Columbia who edited the fourth edition of the manual but is not involved in the fifth.
One example, Dr. First said, is binge eating, now in the manual’s appendix as a tentative category.
“A lot of people want that included in the manual,” Dr. First said, “and there’s some research out there, some evidence that drugs are helpful. But binge eating is also a normal behavior, and you run the risk of labeling up to 30 percent of people with a disorder they don’t really have.”
The debate over gender identity, characterized in the manual as “strong and persistent cross-gender identification,” is already burning hot among transgender people. Soon after the psychiatric association named the group of researchers working on sexual and gender identity, advocates circulated online petitions objecting to two members whose work they considered demeaning.
Transgender people are themselves divided about their place in the manual. Some transgender men and women want nothing to do with psychiatry and demand that the diagnosis be dropped. Others prefer that it remain, in some form, because a doctor’s written diagnosis is needed to obtain insurance coverage for treatment or surgery.
“The language needs to be reformed, at a minimum,” said Mara Keisling, executive director of the National Center for Transgender Equity. “Right now, the manual implies that you cannot be a happy transgender person, that you have to be a social wreck.”
Dr. Jack Drescher, a New York psychoanalyst and member of the sexual disorders work group, said that, in some ways, the gender identity debate echoed efforts to remove homosexuality from the manual in the 1970s
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Great Stocking Stuffers

1. Sensory balls
2. Tangles
3. Jitter Critters
4. Zoo sticks and spiney balls
5. Bug tongs
6. Accordion pipes
7. Tornado Spinners
8. Strecthgetti