New York Times (June 5, 2007).
“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
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
Pediatricians, psychiatrists and psychologists mostly ignored Ms.
Ayers’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
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, Anthony
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 hour long 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
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