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 Government
Mapping Out a Strategy to Fight Autism
by Jane Gross, New York Times, November 19, 2003
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Propelled by the
skyrocketing number of diagnoses of the perplexing brain
disorder autism in children, federal officials have for the
first time mapped out a long-term, interagency plan to deal with
the problem.
The plan includes objectives like the development of teaching
methods that will allow 90 percent of autistic children to
speak; the identification of genetic and nongenetic causes of
the condition; and adequate services for all afflicted children
in the next 7 to 10 years.
The plan, which is to be unveiled at a major autism conference
in Washington that begins today, signals the start of the
push-pull process over financing. Such a plan was required by
the Congressional appropriations committee that controls the
budget for scientific and medical research and education
programs of all kinds.
Few of the nearly 150,000 autistic children and young adults now
getting special education services under federal law will
benefit significantly, experts say, since the most effective
treatment involves early, intensive behavior therapy, which is
poorly understood and in limited supply.
Autism is a disorder with a wide range of symptoms sometimes so
mild as to let a child function in a regular classroom with
special services and at other times so severe that a child is
mute and institutionalized.
The three-pronged plan sets goals for more coordinated
biomedical research, earlier screening and diagnosis, and
effective therapy. The plan demands, for the first time,
collaboration between scientists, clinicians, educators and
policymakers in an array of federal agencies.
"Millions of people need help," said Robert L. Beck, president
of the Autism Society of America, the nation's oldest and
largest autism advocacy group. "And this is a new opportunity
and a very exciting one."
The need is enormous. According to federal education officials,
in 1992-93, fewer than 20,000 of the nation's nearly five
million special-education students, ages 6 to 21, were
considered autistic. Ten years later, nearly 120,000 of six
million special-education students had autism. That does not
count the 19,000 children 3 to 5 receiving autism services under
federal law, or those younger whose numbers have not been
tallied.
Nobody knows the cause of the surge, although epidemiologists
suspect it is largely a result of refined diagnosis and public
awareness. That does not change the dimensions of a problem that
strains schools, medical services and families. Nor does it
affect forecasts of growing caseloads for decades to come.
Dr. Fred R. Volkmar of the Child Study Center at Yale
University, a leading autism researchers and a member of the
committee that drafted the 10-year plan, measures the crisis in
more anecdotal ways.
Twenty years ago, Dr. Volkmar said, when he told people he
worked with autistic children, they often misheard him and
thought he had said "artistic." They had never heard of the
disorder, which typically affects the ability to communicate,
form relationships with others and respond appropriately to the
external world.
By contrast, Dr. Volkmar said, it is rare these days not to know
someone with an autistic child. He now sees children as young as
12 months, gets referrals from day-care centers and has a
two-year waiting list. Were screening techniques to improve so
that diagnoses could be made in infants, he would be
hard-pressed to find schools, trained behavioral therapists or
other services for them.
The plan, which will be reviewed by the Interagency Autism
Coordinating Council, established by the Child Health Act of
2000, is presented in broad brush strokes, with few details and
no price tags. It was drafted by scientists to assess the state
of autism research and identify the roadblocks that might be
hindering progress in understanding the cause and the best
treatment options.
The plan lays out a timeline, in increments of 1 to 3 years, 4
to 6 years and 7 to 10 years and then ranks goals according to
the likelihood of achieving them. Realistic goals in each of the
three stages include the development, evaluation and institution
of effective treatments, in collaboration with the Department of
Education.
More challenging goals, by contrast, include finding effective
drugs for the symptoms of autism and identifying environmental
factors that may contribute to the development of the disorder.
"The idea is to be challenging everyone in the field to be
reaching for the best we can possibly do," said Dr. Steve Foote,
the director of neuroscience at the National Institute of Mental
Health, which was designated the lead agency by the Child Health
Act. The legislation, passed in the Clinton administration,
addresses dozens of childhood disabilities.
Some parents are likely to be frustrated by the plan's
suggestion that it will take at least seven years to provide
treatment for all who need it.
Mr. Beck of the Autism Society of America hoped that long-term
research and improved services were not mutually exclusive.
"There are good practices out there," he said, "just not enough
of them."
He added: "And there's no money on the services and treatment
side. What do we do with the kids for the next 7 to 10 years? We
have to do both. You cannot just throw away a generation of
children."
Many researchers and clinicians in the field credit the advocacy
community with galvanizing the government, following in the
footsteps of AIDS advocates in the 1980's. There are several
such organizations, all included at the conference, that have
shifted emphasis from looking for a cure to also fighting for a
more systematic study of treatments and more services for
children.
There is wide agreement that intensive behavioral therapy, which
can include breaking a simple task like hand washing into a
dozen component parts, beginning at the earliest possible age,
is highly effective for many children. What remains a mystery is
which children benefit and why, which techniques work best and
whether early improvement is sustained over time, said Dr.
Catherine Lord, director of the Autism and Communications
Disorder program at the University of Michigan and an author of
the interagency plan.
Parents of autistic children are stymied by how difficult it is
to find properly trained behavioral therapists. Like others on
the scientific side, Dr. Volkmar said that was because the
Department of Education, under President Bush, had been "a real
stumbling block." Mr. Beck agreed and said he was "quite excited
to see them at the table."
Education officials denied a lack of interest. Robert Pasternack,
assistant secretary for special education, said Mr. Bush had
been generous in his financing requests for educational services
for the disabled. Mr. Pasternack acknowledged a "critical
shortage of special education teachers" and said the government
was eager to "help states recruit and train them."
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