Vaccination News Home Page

http://www.nytimes.com/2002/07/09/health/children/09SENS.html

Debating Diagnosis of a Sensory Malady in Children

By SHERYL GAY STOLBERG

ORTH POTOMAC, Md. — Ever since his baby days, Alex, now nearly 4, has been a puzzle to his parents. As an infant, he screamed unless he was being rocked or held. He hated the feel of water; baths were a nightmare. By 3, he was covering his ears at loud noises. He loved the feel of the sandbox, but could not stand sock fuzz between his toes. Sleep came only in fits and starts.

"He was," Alex's father says, "kind of like a raw nerve."

In years gone by, Alex might have been written off as fussy or difficult, or labeled hyperactive. Today, however, he has received a diagnosis for his baffling collection of symptoms: sensory integration dysfunction, a condition that is regarded by many occupational therapists as a neurological disorder, but which some medical doctors do not believe exists.

The term sensory integration refers to the brain's ability to process and make sense of stimuli that come in through the senses: sight, sound, smell, taste and especially touch. The issue in the sensory dysfunction debate is whether children like Alex, who seem either overly sensitive or under-sensitive to certain types of stimulation, have a true brain disorder or are just at the end of the curve of what is normal.

"Kids vary along a spectrum," says Dr. Adrian Sandler, a developmental pediatrician who is chairman of the American Academy of Pediatrics' committee on children with disabilities. "It is clear that some children seem to have problems with sensory modulation. Noises bother them, touch bothers them. The hustle and bustle of a kindergarten classroom is too much for them. But I don't think it's proven that such a thing as sensory integration disorder exists."

Proof or not, a growing number of parents are being told their children have sensory integration dysfunction — often abbreviated as S.I. — and a growing number of children are undergoing occupational therapy for it. Alex is among them. For the last six weeks, he has been making twice-weekly visits to Beverly Catron, a pediatric occupational therapist who works out of her home in this suburb of Washington.

Many people have some kind of sensory integration problem, Mrs. Catron says. Some get carsick. Some are clumsy. Some get a little too close when they talk to you; they don't recognize their own physical place in space. Some are irritated by the tags in their shirts.

These problems cross over into dysfunction, Mrs. Catron and others say, when they interfere with a child's daily life — his ability to learn, or make friends, or get a good night's sleep.

"You and I can shut out extraneous sounds, we shut out extraneous touch, like when we are sitting in a chair," Mrs. Catron said. "We don't process constantly that our bottom is against the chair. But these children do, so they can't concentrate. Some of them withdraw from other kids; they don't want to be touched or they don't want to have all that noise around them. That's one end of the scale. Then there's another end, where kids are moving all the time because they can't get enough movement."

Alex, Mrs. Catron says, is a little bit of both. He exhibits "tactile defensiveness," shying away from the soft touch of a handshake. But he loves to throw himself on the mats in her basement gym — evidence, she says, that he is seeking out "deep pressure touch."

During a recent therapy session, he twirled endlessly from a trapeze, spinning wildly without getting dizzy. Mrs. Catron encourages him to seek out the kind of movement he seems to need, with the goal of helping him "organize himself" to respond to sensory input.

Alex's parents, both clinical psychologists, who agreed to interviews only if they were not identified, said the treatment seemed to be making a difference. Their son is sleeping better, and not crying nearly as much.

"He is tremendously less irritable, he's smiling more often, he doesn't have that pained look on his face anymore," Alex's mother said.

No one knows precisely how many children might be affected with sensory integration dysfunction, in part because medical doctors have not yet accepted it as a standard diagnosis. There is no entry for sensory integration dysfunction, for instance, in the psychiatric diagnostic and statistical manual. The Centers for Disease Control and Prevention does not track it as a disease.

Nonetheless, Dr. Sandler, of the American Academy of Pediatrics, said there was evidence suggesting as many as 10 to 12 percent of children may have some type of sensory processing problem. Among children with developmental disabilities, including autism and cerebral palsy, he said, the percentage is as high as 30 percent.

Children exposed to drugs in the womb, premature infants and hyperactive children also appear to be disproportionately affected. In some cases, newborns, particularly premature infants, are being treated while they are still in the neonatal intensive care unit; Dr. Sandler said their "tactile defensiveness" can contribute to feeding problems.

Sensory integration dysfunction was first described in the 1960's by a California occupational therapist, A. Jean Ayres, who theorized that the condition was a cause of learning disabilities. The theory has been controversial from the start, said Larry B. Silver, a child psychiatrist in Rockville, Md., and former acting director of the National Institute of Mental Health who is a leading proponent of the sensory integration dysfunction diagnosis.

Yet Dr. Silver says there is growing evidence that "the wiring is laid down differently" in the brains of children who exhibit the symptoms of sensory integration dysfunction. He said pediatricians and schools, particularly in large urban areas, were increasingly recognizing it as a problem.

This is especially so in Washington and its suburbs, in part because of the presence of two women: Lynn Balzer-Martin, an occupational therapist and early disciple of Dr. Ayres's, and Carol Stock Kranowitz, a retired preschool teacher who counts herself as a protégée of Dr. Balzer-Martin.

In 1998, Mrs. Kranowitz published a book, "The Out-of-Sync Child," about the condition. Now in its 18th printing, the book has sold 200,000 copies, she said. It has become the parents' bible to sensory integration dysfunction and has put Mrs. Kranowitz on the lecture circuit.

"I get as many as a dozen out-of-the-blue e-mails a week from parents who have read the book and say, `At last, I have an answer,' " she said.

Dr. Balzer-Martin, who holds a doctorate in education, has developed a specialty in diagnosing sensory integration dysfunction; it was she who evaluated Alex and gave him his diagnosis before referring him to Mrs. Catron. She has developed screening tests and is conducting annual evaluations at a number of preschools in the Washington area. As word has spread, she said, parents have been pressing pediatricians for a diagnosis of S.I. and are seeking referrals for occupational therapy. Sometimes they turn up in the doctors' offices with Mrs. Kranowitz's book.

"There are so many two-parent, highly educated families where people want the best for their kids, and even if the problem isn't a terrible one they are willing to spend time and money to work on it," Dr. Balzer-Martin said. "Parents are not as concerned with an elegant diagnosis as they are with what will help my child."

Some critics, however, worry that sensory integration dysfunction is being over-diagnosed, without good scientific evidence. Dr. Sandler, the developmental pediatrician, said there was a great deal of overlap of what might be called sensory integration dysfunction and other behavioral problems, including attention deficit hyperactivity disorder. Sometimes the two are confused, he said, and "The question is, does the diagnosis of S.I. add anything useful?"

Dr. Sandler said there was some evidence that occupational therapy could help premature infants gain weight and decrease tactile defensiveness. For autistic children, he said, the treatments hold promise, but more study is required. There is clear evidence, he said, that occupational therapy does not help with learning disabilities, as some occupational therapists contend.

"There is much more S.I. treatment going on at this time than I think is justified by the research data," he said.

To which Dr. Silver replied: "There is an awful lot we do in medicine that we don't have hard data for. A pediatric neurologist might say, `This is a sham.' But the important thing for me is, I see the kids improve."

Alex's father agrees. "Seeing," he said, "is believing."

Vaccination News Home Page

ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.