David Baxter PhD
Late Founder
The Disorder Is Sensory; the Diagnosis, Elusive
By BENEDICT CAREY, New York Times
June 5, 2007
DENVER — Almost every parent of young children has heard an anguished cry or two (or 200) something like:
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.
Pediatricians, psychiatrists and psychologists mostly ignored Ms. Ayres’s message at the time, and most do so today. Occupational therapists are not M.D.’s, many don’t have Ph.D.’s, and they have little voice in mainstream medicine. But increasing numbers of parents have been listening, particularly in the last few years. To explain why, they usually point to their own children.
“All I know is that when I heard a loud sound in first grade, I hid under my desk,” said Matthew Pougnet, who just finished third grade and lives in Denver with his parents and two brothers.
A capable student who seemed unable to relax, Matthew soon was told he had attention deficit disorder and was given a prescription for the stimulant drug Ritalin. “It made no difference at all,” his father, Antony Pougnet, said in an interview.
Convinced there was more to it than that, the Pougnets found their way to the Sensory Therapies and Research Center near Denver, a clinic devoted to treatment and study of sensory problems in children and adults. The center’s director, Lucy J. Miller, an occupational therapist, is the country’s leading research scientist specializing in sensory processing disorder. She assembled the petition that was sent to the American Psychiatric Association, and she has been working to develop the first manual-based standards for diagnosis and treatment of sensory problems to be used for research.
For a child particularly sensitive to certain sensations, Dr. Miller said, the first step in treatment is simply to make the parents aware of what is causing many of the disruptive behaviors. “This is a very important step in itself, because it means that the family now understands the cause of the behaviors, and the extended family too, so it gives the child a community that is looking out for these sensitivities,” she said.
Occupational therapists’ child clinics typically look like indoor jungle gyms, with an assortment of swings, mats, blow-up balance balls, blocks and other toys. And the therapy itself, usually given in hourlong sessions that meet once or twice a week, looks a lot like one-on-one playtime.
But it is playtime with a purpose. If you calm an over-aroused child, the theory goes, by using low lighting, gentle touch and rocking movements, then he or she will be better able to handle the sensations that are upsetting — sudden, sharp noises, for example — when they are presented gradually. Being absorbed in a game can also blunt a child’s response to the dreaded sensations.
For children who seem undersensitive, the approach is reversed: Get them lifting, pushing, pulling — working — until they gradually become more alert to the feel of their body and its surroundings.
“You are playing with them with a very specific goal: to get them back into the classroom more organized, more settled, so they can learn,” said Debra Fisher, an occupational therapist who works at the Manhattan School for Children.
Watching this therapy, many parents say, it is hard not to wonder whether another half-hour of recess would not be just as good and far cheaper. And some techniques intended to help treat sensory problems for which occupational therapists are best known, like brushing children’s limbs with a soft brush, or spinning them, have no proven benefits, researchers say.
But parents who have good experiences with occupational therapy say that over time, and usually within months, the techniques somehow teach their children how to better manage their behavior in ways that regular playtime had not. The youngsters may still tense when touched or hug others too tightly, for instance, but they stop tackling classmates. Matthew Pougnet still hates the sound of fire alarm drills, but he no longer ducks for cover.
At a national conference in Denver in May held by the SPD Foundation, which promotes education and research on sensory processing problems and supports Dr. Miller’s clinic, hundreds of parents and therapists, and some children, traded stories of frustration, breakthroughs and hope. It had the feel of a revival meeting.
Spencer Cambor, 9, of Boulder, Colo., said that he had an assortment of sensitivities, from smells and tastes (“Lettuce is so bad I almost throw up. Really throw up.”) to a feeling of being cramped or crowded, which kept him in perpetual motion.
Spencer is still unusually sensitive, said his father, Roger Cambor, a psychiatrist, but added that after months of occupational therapy, “there was a marked change; all of a sudden he could sit in a circle when asked, he settled down, his handwriting got much better.”
Other families have tales, too, of children who do much better in class when allowed to fidget, handle a small rubber toy, bounce in place, even sit against the wall on a blow-up cushion. As with any therapy, there are also parents who say they saw no change, that the therapy was a waste of money and time.
Whether these diverse anecdotes fit together into a coherent picture of a stand-alone, treatable disorder is not yet clear, at least not to researchers, and many say there is good reason for caution.
The current interest in sensory processing echoes the 1970s theory that learning problems were caused by impaired eye-tracking abilities, said Stephen P. Hinshaw, professor and chairman of the psychology department at the University of California, Berkeley, and co-author of a cultural history of mental health stigma, “Mark of Shame.”
“Back then people tried all sorts of therapy to correct eye tracking, and it turned out to be mostly misguided,” Dr. Hinshaw said. “This idea that there are deep, underlying sensory problems, and if we treat those it will bubble up and the child’s behavior will improve — boy, that idea has a checkered history.”
“It does make some intuitive sense, all right,” Dr. Hinshaw added, “but I keep looking and hoping that the evidence base for this will get better.”
Researchers have in fact laid down a fragile thread of evidence, publishing several small studies in just the past year of children identified with sensory processing problems and normal I.Q.’s — that is, no developmental problems.
In one study, Patricia Davies of Colorado State University led a research team that analyzed how children identified as having sensitivity to sounds responded to pairs of sharp clicks, heard through headphones. The team used EEG technology to measure brain waves, and found that these youngsters responded to the first click normally, showing the same pulse of brain activity as children without sensory problems.
But this comparison group muted its response to the second click, whereas the children identified as more sensitive did not. This automatic adjustment, called sensory gating, “was clearly different in the group with sensory processing problems,” the authors concluded.
Similar studies have found that children identified as having sensory problems also have an atypical brain response, as measured by EEG, when exposed to two things at once, like a click and touch. And in March, the Journal of Occupational Therapy published the first scientifically rigorous trial of guided therapy.
In the study, which included 24 children, those who received a 10-week course of occupational therapy showed greater improvements, on specific goals set by their parents, than a comparison group of children who did not receive such therapy.
“We don’t have as much data as we’d like, but honestly, I’ve been at this for 33 years, and it’s just nice to see some solid, experimental data,” Dr. Miller said. “We desperately need more, and for that we need money.”
The money is likely to flow only when sensory processing is recognized as a legitimate disorder. And the American Psychiatric Association’s decision (on this proposal and many others) is not expected for three to four years.
So sensory processing disorder is entering a kind of limbo state: present but not fully arrived; noticed but, like many of the children struggling with symptoms, not entirely accepted by peers. And experts say that it is likely to be the experience of parents and children that determine its future.
“My experience is that when parents learn about this, they say, ‘Oh, I never thought about it that way’ — it gives them a whole different way to look at their child’s behaviors,” said Roseann Schaaf, a neuroscientist and occupational therapist at Thomas Jefferson University in Philadelphia. “And parents are pretty savvy; they know pretty quickly if it makes sense” and whether treatment is helping.
By BENEDICT CAREY, New York Times
June 5, 2007
DENVER — Almost every parent of young children has heard an anguished cry or two (or 200) something like:
- “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!”
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.
Pediatricians, psychiatrists and psychologists mostly ignored Ms. Ayres’s message at the time, and most do so today. Occupational therapists are not M.D.’s, many don’t have Ph.D.’s, and they have little voice in mainstream medicine. But increasing numbers of parents have been listening, particularly in the last few years. To explain why, they usually point to their own children.
“All I know is that when I heard a loud sound in first grade, I hid under my desk,” said Matthew Pougnet, who just finished third grade and lives in Denver with his parents and two brothers.
A capable student who seemed unable to relax, Matthew soon was told he had attention deficit disorder and was given a prescription for the stimulant drug Ritalin. “It made no difference at all,” his father, Antony Pougnet, said in an interview.
Convinced there was more to it than that, the Pougnets found their way to the Sensory Therapies and Research Center near Denver, a clinic devoted to treatment and study of sensory problems in children and adults. The center’s director, Lucy J. Miller, an occupational therapist, is the country’s leading research scientist specializing in sensory processing disorder. She assembled the petition that was sent to the American Psychiatric Association, and she has been working to develop the first manual-based standards for diagnosis and treatment of sensory problems to be used for research.
For a child particularly sensitive to certain sensations, Dr. Miller said, the first step in treatment is simply to make the parents aware of what is causing many of the disruptive behaviors. “This is a very important step in itself, because it means that the family now understands the cause of the behaviors, and the extended family too, so it gives the child a community that is looking out for these sensitivities,” she said.
Occupational therapists’ child clinics typically look like indoor jungle gyms, with an assortment of swings, mats, blow-up balance balls, blocks and other toys. And the therapy itself, usually given in hourlong sessions that meet once or twice a week, looks a lot like one-on-one playtime.
But it is playtime with a purpose. If you calm an over-aroused child, the theory goes, by using low lighting, gentle touch and rocking movements, then he or she will be better able to handle the sensations that are upsetting — sudden, sharp noises, for example — when they are presented gradually. Being absorbed in a game can also blunt a child’s response to the dreaded sensations.
For children who seem undersensitive, the approach is reversed: Get them lifting, pushing, pulling — working — until they gradually become more alert to the feel of their body and its surroundings.
“You are playing with them with a very specific goal: to get them back into the classroom more organized, more settled, so they can learn,” said Debra Fisher, an occupational therapist who works at the Manhattan School for Children.
Watching this therapy, many parents say, it is hard not to wonder whether another half-hour of recess would not be just as good and far cheaper. And some techniques intended to help treat sensory problems for which occupational therapists are best known, like brushing children’s limbs with a soft brush, or spinning them, have no proven benefits, researchers say.
But parents who have good experiences with occupational therapy say that over time, and usually within months, the techniques somehow teach their children how to better manage their behavior in ways that regular playtime had not. The youngsters may still tense when touched or hug others too tightly, for instance, but they stop tackling classmates. Matthew Pougnet still hates the sound of fire alarm drills, but he no longer ducks for cover.
At a national conference in Denver in May held by the SPD Foundation, which promotes education and research on sensory processing problems and supports Dr. Miller’s clinic, hundreds of parents and therapists, and some children, traded stories of frustration, breakthroughs and hope. It had the feel of a revival meeting.
Spencer Cambor, 9, of Boulder, Colo., said that he had an assortment of sensitivities, from smells and tastes (“Lettuce is so bad I almost throw up. Really throw up.”) to a feeling of being cramped or crowded, which kept him in perpetual motion.
Spencer is still unusually sensitive, said his father, Roger Cambor, a psychiatrist, but added that after months of occupational therapy, “there was a marked change; all of a sudden he could sit in a circle when asked, he settled down, his handwriting got much better.”
Other families have tales, too, of children who do much better in class when allowed to fidget, handle a small rubber toy, bounce in place, even sit against the wall on a blow-up cushion. As with any therapy, there are also parents who say they saw no change, that the therapy was a waste of money and time.
Whether these diverse anecdotes fit together into a coherent picture of a stand-alone, treatable disorder is not yet clear, at least not to researchers, and many say there is good reason for caution.
The current interest in sensory processing echoes the 1970s theory that learning problems were caused by impaired eye-tracking abilities, said Stephen P. Hinshaw, professor and chairman of the psychology department at the University of California, Berkeley, and co-author of a cultural history of mental health stigma, “Mark of Shame.”
“Back then people tried all sorts of therapy to correct eye tracking, and it turned out to be mostly misguided,” Dr. Hinshaw said. “This idea that there are deep, underlying sensory problems, and if we treat those it will bubble up and the child’s behavior will improve — boy, that idea has a checkered history.”
“It does make some intuitive sense, all right,” Dr. Hinshaw added, “but I keep looking and hoping that the evidence base for this will get better.”
Researchers have in fact laid down a fragile thread of evidence, publishing several small studies in just the past year of children identified with sensory processing problems and normal I.Q.’s — that is, no developmental problems.
In one study, Patricia Davies of Colorado State University led a research team that analyzed how children identified as having sensitivity to sounds responded to pairs of sharp clicks, heard through headphones. The team used EEG technology to measure brain waves, and found that these youngsters responded to the first click normally, showing the same pulse of brain activity as children without sensory problems.
But this comparison group muted its response to the second click, whereas the children identified as more sensitive did not. This automatic adjustment, called sensory gating, “was clearly different in the group with sensory processing problems,” the authors concluded.
Similar studies have found that children identified as having sensory problems also have an atypical brain response, as measured by EEG, when exposed to two things at once, like a click and touch. And in March, the Journal of Occupational Therapy published the first scientifically rigorous trial of guided therapy.
In the study, which included 24 children, those who received a 10-week course of occupational therapy showed greater improvements, on specific goals set by their parents, than a comparison group of children who did not receive such therapy.
“We don’t have as much data as we’d like, but honestly, I’ve been at this for 33 years, and it’s just nice to see some solid, experimental data,” Dr. Miller said. “We desperately need more, and for that we need money.”
The money is likely to flow only when sensory processing is recognized as a legitimate disorder. And the American Psychiatric Association’s decision (on this proposal and many others) is not expected for three to four years.
So sensory processing disorder is entering a kind of limbo state: present but not fully arrived; noticed but, like many of the children struggling with symptoms, not entirely accepted by peers. And experts say that it is likely to be the experience of parents and children that determine its future.
“My experience is that when parents learn about this, they say, ‘Oh, I never thought about it that way’ — it gives them a whole different way to look at their child’s behaviors,” said Roseann Schaaf, a neuroscientist and occupational therapist at Thomas Jefferson University in Philadelphia. “And parents are pretty savvy; they know pretty quickly if it makes sense” and whether treatment is helping.
