12-27-2004, 04:25 AM
http://www.nytimes.com/2004/12/27/health/27autism.html
----------------------------------------------------------------------
December 27, 2004
Results Falling Short of Claims in Behavior Therapy for Autism
By BENEDICT CAREY
Desperate parents of autistic children have tried almost everything -
hormone injections, exotic diets, faith healing - in the hope of
finding a cure.
But more than 60 years after it was first identified, autism remains
mystifying and stubbornly difficult to treat. About the only thing
parents, doctors and policy makers agree on is that the best chance
for autistic children to develop social and language skills is to
enroll them in some type of intensive behavioral therapy.
A government-appointed panel has endorsed such therapies, which can
cost $40,000 to more than $60,000 per year. Parents fight to get
their children placed in behavioral programs, encouraged by the
claims of some therapists that they can produce astonishing
improvement in up to 50 percent of cases. An estimated 141,000
children with autism receive special education services, in many
cases including behavioral therapies, through public schools.
Yet the science behind behavioral treatments is modest at best.
Researchers have published very few rigorously controlled studies of
the therapies, and the results of those studies have been mixed.
While some children thrive, even joining regular classrooms, the
studies have found that most show moderate or little improvement. And
researchers say most parents now experiment with so many alternative
treatments - including vitamins, diets, sensory therapies and
computer games - that they muddy the results of behavior treatment,
making it very hard to say what is causing a child to gain skills or
to decline.
The most recent analysis of treatment research, financed by the
National Institutes of Health and scheduled to be published next
year, concludes that although behavior treatments benefit many
children, there is no evidence that any particular treatment leads to
recovery. Doctors do not yet know how to predict which children will
improve in the treatments, or even how treatable the condition is,
the report concludes.
"If so many kids are being cured, then where are they? Who are they?
Show me 10 percent," said Dr. Bryna Siegel, director of the autism
clinic at the University of California, San Francisco. "The reason
practitioners can't show you all these kids is because there simply
aren't that many of them out there."
Questioning the Evidence
No one disputes that behavioral therapies can be transforming:
parents are deeply committed to them, and most experts emphasize
their successes, saying that they are the best option now available.
But others say the evidence is not as solid as it is sometimes made
out to be - a view echoed by some health insurers, who have refused
or limited coverage for treatment. And politics, the experts say,
sometimes gets in the way of a frank evaluation of how well the
programs work.
"We're at a point," said Dr. Susan Hyman, an associate professor of
pediatrics at the University of Rochester Medical Center, "where
questioning the evidence behind them is like criticizing your
grandmother's matzo-ball soup."
Behavioral treatment programs come in several varieties. A therapy
called applied behavior analysis is the most studied and most
commonly used. In this approach, the therapist begins by working one
on one with a child, often 20 to 40 hours a week, to build social and
language abilities in very small steps - by rewarding the youngster
with a treat for learning words, for example, or for sitting still or
greeting someone.
A state-financed program in North Carolina, known by the acronym
Teacch (its full name is Treatment and Education of Autistic and
Related Communication Handicapped Children), uses pictures and
schedules, among other techniques, to keep children focused and
interacting with others, and to take advantage of their visual
skills. It is taught in classrooms, by trained teachers, or in
special clinics, and is provided free throughout the state.
Floor Time, another popular option, has teachers and parents on the
floor, following a child's lead in interactive play to develop
emotional connections. Other approaches, including the Denver Model
and Pivotal Response Training, blend rewards for specific behaviors
with play techniques and schedules. These have also helped children
improve.
In a 2001 report, a National Academy of Sciences panel convened by
the federal government evaluated all the research and concluded that
treating children as early as possible, and giving them at least 25
hours a week of therapy, was more important than the specific name-
brand approach used. Parents' involvement in the treatment was
especially helpful, the report said.
In some states, parents have fought legal battles with school
districts to get such programs paid for. Many parents hire therapists
to come to their homes; others move to other states to get better
services.
"We redesigned our entire third floor to look just like the Teacch
classroom," said Inga Sawyer, whose 5-year-old son and 3-year-old
daughter use Teacch methods in Carrboro, N.C., near Chapel
Hill. "Both of them thrive on the structure, and it has been really
helpful in organizing their day" and mainstreaming them in school,
she said.
Belief Versus Proof
But believing in the programs is one thing; proving how well they
work is another. Researchers say traditional studies are difficult to
carry out. The therapies are extremely time-consuming, and some
parents, unwilling to take a chance on less-than-optimal therapy,
refuse to let their children be part of the control groups that are
essential for scientific research. Even the most well-known and
rigorously studied brand of behavioral therapy, the Lovaas method,
appears to be less effective than was originally hoped, and its
record in studies is mixed.
Named after its inventor, Dr. O. Ivar Lovaas, a psychologist at the
University of California, Los Angeles, the method is taught from
manuals and is a version of applied behavior analysis that demands
close tracking of children's day-to-day behavior. In the original
program, therapists would at times slap children on the thigh when
they did not behave as instructed, a punishment that was phased out
in the late 1980's.
In 1987, Dr. Lovaas reported in a small study that 9 of 19 children
who received up to 40 hours a week of his intensive therapy were
classified as functioning normally after at least two years. Only 2
percent of children in a comparison group that received a less
intensive version of the therapy did as well.
In a follow-up paper in 1993, Dr. Lovaas reported that those initial
gains had held up through age 12 or 13 in the children, bringing a
sense of hope and possibility to a field that had known mostly
resignation.
Yet in 2000, a team of researchers who had trained with Dr. Lovaas
tried to confirm the findings and could not. After receiving 20 to 30
hours a week of the Lovaas method for two years, only 2 of 15
children in the study reached the highest level, scoring at age level
on all measures and entering regular classrooms without help,
according to the study's lead author, Dr. Tristram Smith, an
assistant professor of psychology at the University of Rochester. No
children in the control group reached the same level, he said.
Children in the study who had full-blown autism, as opposed to a less
severe disorder, did not show significant improvements as a group in
most areas, compared with children who were given less intensive
therapy, the study found.
Dr. Lovaas, now a professor emeritus at U.C.L.A., said in an
interview that the most likely explanation for the modest findings
was the quality of the therapy being delivered. "I don't know why the
results were so different, but my best guess is that they did not
deliver the treatment as skillfully as we do here," he said.
Yet in a review of the most recent research, accepted for publication
in The Journal of Clinical Child and Adolescent Psychology, Dr. Sally
Rogers, director of the MIND Institute at the University of
California, Davis, wrote of that study: "This type of treatment is
considered by many to be the treatment of choice for lower
functioning children with autism. Yet the best designed study of this
treatment, carried out by experts in the method, did not demonstrate
improvement in the treated group of children with the full syndrome
of autism relative to controls."
In an interview, Dr. Rogers said that the Smith study by itself was
too small to be conclusive, and that less rigorous trials suggested
many children in intensive therapies made moderate gains in language
ability and other areas, even if they did not overcome the underlying
disabilities.
In one such trial, Canadian researchers found that when they taught
parents how to encourage play and communication, children showed a
significant gain in language skill after just three months, compared
with other autistic children treated in community day care. A 2002
Norwegian study of 25 children ages 4 to 7 found that the Lovaas
treatment prompted I.Q. gains of 17 points, although no child was
described as recovered, according to the review. In other work,
researchers who have followed children through Teacch, the Denver
Model and other programs have also noted accelerated gains in I.Q.
and language, among other things.
"You are talking about therapies that can raise I.Q.'s by 10 to 20
points, which is significant, and very hard to do," Dr. Rogers said.
The Fundamental Question
Still, scientists have not answered perhaps the most fundamental
question about these therapies: Why does one child thrive in
treatment while another, equally affected, does not?
Most researchers have hypotheses. Some believe the response could
have to do with structural properties of the brain, which would show
up on brain scans. Others suspect that children who do not do well in
treatment have a subtle language processing problem in addition to
autism.
In his long experience, Dr. Lovaas said, he has observed that
children who do not learn to imitate others' speech within a few
months of treatment rarely do well. And researchers in San Diego have
proposed that having a basic ability to initiate social interaction
is crucial to success in treatment: they found that children who
tried to engage their peers frequently during a short play period did
very well in therapy.
Each of these ideas is under investigation. "I expect with more
research we may find that there are two groups of children - one
group that does well in directed teaching, and another than needs a
biomedical treatment," said Dr. Geraldine Dawson, director of the
autism program at the University of Washington in Seattle. "And we
would be able to tell them apart."
But teasing apart such subtle differences in language and brain
structure requires careful control, and that is one thing autism
researchers do not have. With doctors emphasizing the importance of
early treatment, parents of autistic children hear the clock ticking
and try anything they can find. Three new surveys, of a total of
2,500 parents in North Carolina, Massachusetts and Pennsylvania,
found that about three-quarters of families dealing with autism try
alternative treatments, usually as an accompaniment to structured
counseling programs.
One of the most popular options, tried by 50 percent to 70 percent of
parents, is sensory integration, a technique in which therapists
often use swings or weighted vests to help "ground" a child, and even
brush children's skin with a special brush.
About 25 to 40 percent of parents, the surveys find, try special
diets for their children, most often a menu free of gluten, a protein
found in flour, and casein, a protein in dairy products, which some
people believe prompt an allergic reaction that causes or worsens
autism.
Many parents (10 percent to 30 percent) give their children large
doses of vitamins like magnesium and B6 or food supplements, based on
reports that these regimes have normalized behavior in some cases.
And up to 10 percent of parents have paid to have their children go
horseback riding, swim in a pool with dolphins or receive healing
touch therapy as part of a program for autism.
Scientists say they do not have rigorously controlled evidence that
any of these alternative treatments improves the core symptoms of
autism: social isolation, repetitive behaviors and difficulty in
developing language skills. In the surveys, parents generally agreed:
individual treatments often helped with some behaviors, like
agitation, but seldom altered the fundamental disability.
"There's a grief response to a diagnosis of autism; parents go
through mourning and denial, and promising them their child will be
cured by these therapies gives them false hope and only prolongs the
grief," said Dr. Siegel, of U.C.S.F.
In fact, the surveys themselves contain hints of just how frustrated
many families are: up to half the parents report that they have put
their children on psychiatric medications, including antidepressants,
stimulants like Ritalin and antipsychotic drugs usually prescribed
for schizophrenia. These drugs can settle some of the symptoms
associated with autism, like aggression, but they do not alter the
underlying condition and can play havoc with some children's moods,
doctors say.
In the coming years, experts say, the science of treatment should
become much clearer. The National Institutes of Health is financing
some 70 studies related to treatment, including a careful study of
the popular gluten- and casein-free diet, being conducted by Dr.
Hyman in Rochester. And a group in Wisconsin has completed a trial of
Dr. Lovaas's method among 23 children, and there are 10 other sites
working on similar studies, according to Dr. Lovaas and Dr. Smith,
who is coordinating the research. The results from these trials, they
say, look encouraging.
Still, many parents who have brought autistic children to adulthood
are not holding their breath. Having tried some treatments and
watched others flare out, they say change is certainly possible. But
that change tends to be slow, they say, and occurs not just in their
children but also in their own expectations and ways of coping.
With the help of the Teacch program, Alice Wertheimer's son David has
continued through high school in special classes, learning over time
to communicate, to be comfortable with himself, to have some
independence. At 18, he is a young man who enjoys repeating lines
from favorite movies, mimicking other students and teachers, and
spending time with his parents. As a child, Ms. Wertheimer said,
David rated somewhere in the middle of the autism scale, but he has
come a long way. He is also still clearly autistic, although that is
not how those who know him think about it.
"He is who he is," Ms. Wertheimer said, "just a great, great kid."
Copyright 2004 The New York Times Company | Home | Privacy Policy |
Search | Corrections | RSS | Help | Back to Top
----------------------------------------------------------------------
December 27, 2004
Results Falling Short of Claims in Behavior Therapy for Autism
By BENEDICT CAREY
Desperate parents of autistic children have tried almost everything -
hormone injections, exotic diets, faith healing - in the hope of
finding a cure.
But more than 60 years after it was first identified, autism remains
mystifying and stubbornly difficult to treat. About the only thing
parents, doctors and policy makers agree on is that the best chance
for autistic children to develop social and language skills is to
enroll them in some type of intensive behavioral therapy.
A government-appointed panel has endorsed such therapies, which can
cost $40,000 to more than $60,000 per year. Parents fight to get
their children placed in behavioral programs, encouraged by the
claims of some therapists that they can produce astonishing
improvement in up to 50 percent of cases. An estimated 141,000
children with autism receive special education services, in many
cases including behavioral therapies, through public schools.
Yet the science behind behavioral treatments is modest at best.
Researchers have published very few rigorously controlled studies of
the therapies, and the results of those studies have been mixed.
While some children thrive, even joining regular classrooms, the
studies have found that most show moderate or little improvement. And
researchers say most parents now experiment with so many alternative
treatments - including vitamins, diets, sensory therapies and
computer games - that they muddy the results of behavior treatment,
making it very hard to say what is causing a child to gain skills or
to decline.
The most recent analysis of treatment research, financed by the
National Institutes of Health and scheduled to be published next
year, concludes that although behavior treatments benefit many
children, there is no evidence that any particular treatment leads to
recovery. Doctors do not yet know how to predict which children will
improve in the treatments, or even how treatable the condition is,
the report concludes.
"If so many kids are being cured, then where are they? Who are they?
Show me 10 percent," said Dr. Bryna Siegel, director of the autism
clinic at the University of California, San Francisco. "The reason
practitioners can't show you all these kids is because there simply
aren't that many of them out there."
Questioning the Evidence
No one disputes that behavioral therapies can be transforming:
parents are deeply committed to them, and most experts emphasize
their successes, saying that they are the best option now available.
But others say the evidence is not as solid as it is sometimes made
out to be - a view echoed by some health insurers, who have refused
or limited coverage for treatment. And politics, the experts say,
sometimes gets in the way of a frank evaluation of how well the
programs work.
"We're at a point," said Dr. Susan Hyman, an associate professor of
pediatrics at the University of Rochester Medical Center, "where
questioning the evidence behind them is like criticizing your
grandmother's matzo-ball soup."
Behavioral treatment programs come in several varieties. A therapy
called applied behavior analysis is the most studied and most
commonly used. In this approach, the therapist begins by working one
on one with a child, often 20 to 40 hours a week, to build social and
language abilities in very small steps - by rewarding the youngster
with a treat for learning words, for example, or for sitting still or
greeting someone.
A state-financed program in North Carolina, known by the acronym
Teacch (its full name is Treatment and Education of Autistic and
Related Communication Handicapped Children), uses pictures and
schedules, among other techniques, to keep children focused and
interacting with others, and to take advantage of their visual
skills. It is taught in classrooms, by trained teachers, or in
special clinics, and is provided free throughout the state.
Floor Time, another popular option, has teachers and parents on the
floor, following a child's lead in interactive play to develop
emotional connections. Other approaches, including the Denver Model
and Pivotal Response Training, blend rewards for specific behaviors
with play techniques and schedules. These have also helped children
improve.
In a 2001 report, a National Academy of Sciences panel convened by
the federal government evaluated all the research and concluded that
treating children as early as possible, and giving them at least 25
hours a week of therapy, was more important than the specific name-
brand approach used. Parents' involvement in the treatment was
especially helpful, the report said.
In some states, parents have fought legal battles with school
districts to get such programs paid for. Many parents hire therapists
to come to their homes; others move to other states to get better
services.
"We redesigned our entire third floor to look just like the Teacch
classroom," said Inga Sawyer, whose 5-year-old son and 3-year-old
daughter use Teacch methods in Carrboro, N.C., near Chapel
Hill. "Both of them thrive on the structure, and it has been really
helpful in organizing their day" and mainstreaming them in school,
she said.
Belief Versus Proof
But believing in the programs is one thing; proving how well they
work is another. Researchers say traditional studies are difficult to
carry out. The therapies are extremely time-consuming, and some
parents, unwilling to take a chance on less-than-optimal therapy,
refuse to let their children be part of the control groups that are
essential for scientific research. Even the most well-known and
rigorously studied brand of behavioral therapy, the Lovaas method,
appears to be less effective than was originally hoped, and its
record in studies is mixed.
Named after its inventor, Dr. O. Ivar Lovaas, a psychologist at the
University of California, Los Angeles, the method is taught from
manuals and is a version of applied behavior analysis that demands
close tracking of children's day-to-day behavior. In the original
program, therapists would at times slap children on the thigh when
they did not behave as instructed, a punishment that was phased out
in the late 1980's.
In 1987, Dr. Lovaas reported in a small study that 9 of 19 children
who received up to 40 hours a week of his intensive therapy were
classified as functioning normally after at least two years. Only 2
percent of children in a comparison group that received a less
intensive version of the therapy did as well.
In a follow-up paper in 1993, Dr. Lovaas reported that those initial
gains had held up through age 12 or 13 in the children, bringing a
sense of hope and possibility to a field that had known mostly
resignation.
Yet in 2000, a team of researchers who had trained with Dr. Lovaas
tried to confirm the findings and could not. After receiving 20 to 30
hours a week of the Lovaas method for two years, only 2 of 15
children in the study reached the highest level, scoring at age level
on all measures and entering regular classrooms without help,
according to the study's lead author, Dr. Tristram Smith, an
assistant professor of psychology at the University of Rochester. No
children in the control group reached the same level, he said.
Children in the study who had full-blown autism, as opposed to a less
severe disorder, did not show significant improvements as a group in
most areas, compared with children who were given less intensive
therapy, the study found.
Dr. Lovaas, now a professor emeritus at U.C.L.A., said in an
interview that the most likely explanation for the modest findings
was the quality of the therapy being delivered. "I don't know why the
results were so different, but my best guess is that they did not
deliver the treatment as skillfully as we do here," he said.
Yet in a review of the most recent research, accepted for publication
in The Journal of Clinical Child and Adolescent Psychology, Dr. Sally
Rogers, director of the MIND Institute at the University of
California, Davis, wrote of that study: "This type of treatment is
considered by many to be the treatment of choice for lower
functioning children with autism. Yet the best designed study of this
treatment, carried out by experts in the method, did not demonstrate
improvement in the treated group of children with the full syndrome
of autism relative to controls."
In an interview, Dr. Rogers said that the Smith study by itself was
too small to be conclusive, and that less rigorous trials suggested
many children in intensive therapies made moderate gains in language
ability and other areas, even if they did not overcome the underlying
disabilities.
In one such trial, Canadian researchers found that when they taught
parents how to encourage play and communication, children showed a
significant gain in language skill after just three months, compared
with other autistic children treated in community day care. A 2002
Norwegian study of 25 children ages 4 to 7 found that the Lovaas
treatment prompted I.Q. gains of 17 points, although no child was
described as recovered, according to the review. In other work,
researchers who have followed children through Teacch, the Denver
Model and other programs have also noted accelerated gains in I.Q.
and language, among other things.
"You are talking about therapies that can raise I.Q.'s by 10 to 20
points, which is significant, and very hard to do," Dr. Rogers said.
The Fundamental Question
Still, scientists have not answered perhaps the most fundamental
question about these therapies: Why does one child thrive in
treatment while another, equally affected, does not?
Most researchers have hypotheses. Some believe the response could
have to do with structural properties of the brain, which would show
up on brain scans. Others suspect that children who do not do well in
treatment have a subtle language processing problem in addition to
autism.
In his long experience, Dr. Lovaas said, he has observed that
children who do not learn to imitate others' speech within a few
months of treatment rarely do well. And researchers in San Diego have
proposed that having a basic ability to initiate social interaction
is crucial to success in treatment: they found that children who
tried to engage their peers frequently during a short play period did
very well in therapy.
Each of these ideas is under investigation. "I expect with more
research we may find that there are two groups of children - one
group that does well in directed teaching, and another than needs a
biomedical treatment," said Dr. Geraldine Dawson, director of the
autism program at the University of Washington in Seattle. "And we
would be able to tell them apart."
But teasing apart such subtle differences in language and brain
structure requires careful control, and that is one thing autism
researchers do not have. With doctors emphasizing the importance of
early treatment, parents of autistic children hear the clock ticking
and try anything they can find. Three new surveys, of a total of
2,500 parents in North Carolina, Massachusetts and Pennsylvania,
found that about three-quarters of families dealing with autism try
alternative treatments, usually as an accompaniment to structured
counseling programs.
One of the most popular options, tried by 50 percent to 70 percent of
parents, is sensory integration, a technique in which therapists
often use swings or weighted vests to help "ground" a child, and even
brush children's skin with a special brush.
About 25 to 40 percent of parents, the surveys find, try special
diets for their children, most often a menu free of gluten, a protein
found in flour, and casein, a protein in dairy products, which some
people believe prompt an allergic reaction that causes or worsens
autism.
Many parents (10 percent to 30 percent) give their children large
doses of vitamins like magnesium and B6 or food supplements, based on
reports that these regimes have normalized behavior in some cases.
And up to 10 percent of parents have paid to have their children go
horseback riding, swim in a pool with dolphins or receive healing
touch therapy as part of a program for autism.
Scientists say they do not have rigorously controlled evidence that
any of these alternative treatments improves the core symptoms of
autism: social isolation, repetitive behaviors and difficulty in
developing language skills. In the surveys, parents generally agreed:
individual treatments often helped with some behaviors, like
agitation, but seldom altered the fundamental disability.
"There's a grief response to a diagnosis of autism; parents go
through mourning and denial, and promising them their child will be
cured by these therapies gives them false hope and only prolongs the
grief," said Dr. Siegel, of U.C.S.F.
In fact, the surveys themselves contain hints of just how frustrated
many families are: up to half the parents report that they have put
their children on psychiatric medications, including antidepressants,
stimulants like Ritalin and antipsychotic drugs usually prescribed
for schizophrenia. These drugs can settle some of the symptoms
associated with autism, like aggression, but they do not alter the
underlying condition and can play havoc with some children's moods,
doctors say.
In the coming years, experts say, the science of treatment should
become much clearer. The National Institutes of Health is financing
some 70 studies related to treatment, including a careful study of
the popular gluten- and casein-free diet, being conducted by Dr.
Hyman in Rochester. And a group in Wisconsin has completed a trial of
Dr. Lovaas's method among 23 children, and there are 10 other sites
working on similar studies, according to Dr. Lovaas and Dr. Smith,
who is coordinating the research. The results from these trials, they
say, look encouraging.
Still, many parents who have brought autistic children to adulthood
are not holding their breath. Having tried some treatments and
watched others flare out, they say change is certainly possible. But
that change tends to be slow, they say, and occurs not just in their
children but also in their own expectations and ways of coping.
With the help of the Teacch program, Alice Wertheimer's son David has
continued through high school in special classes, learning over time
to communicate, to be comfortable with himself, to have some
independence. At 18, he is a young man who enjoys repeating lines
from favorite movies, mimicking other students and teachers, and
spending time with his parents. As a child, Ms. Wertheimer said,
David rated somewhere in the middle of the autism scale, but he has
come a long way. He is also still clearly autistic, although that is
not how those who know him think about it.
"He is who he is," Ms. Wertheimer said, "just a great, great kid."
Copyright 2004 The New York Times Company | Home | Privacy Policy |
Search | Corrections | RSS | Help | Back to Top