[Susan Adirim]

Subject: NYTimes.com Article: Autism Therapy Is Called Effective, but Rare

This article from NYTimes.com

Autism Therapy Is Called Effective, but Rare

October 22, 2002
By LAURIE TARKAN

No one has found a cure for autism, the neurological
disorder that leads to lifelong impairments in a child's
ability to speak, respond to others, share affection and
learn. But there is a growing consensus that intensive
early intervention is both effective and essential – the
sooner after diagnosis, the better.

Early intervention, which involves many hours of therapy
with one or more specialists, does not help every autistic
child to the same degree. It is best started no later than
age 2 or 3, and for reasons that are unclear, it does not
help some children at all. But for those who are helped,
their parents say, the changes are miraculous.

Yet the success of early intervention is posing a painful
predicament for schools and families – a predicament made
more immediate by a rising tide of diagnoses of autism.
Last week, researchers reported that the number of
austistic children in California had risen more than
sixfold since 1987, and other states and the federal
government have also noted sharp increases.

By federal law, public schools must provide appropriate
education for children with disabilities, starting at age
3. But the treatment is so expensive – averaging $33,000 a
year, according to research published in the journal
Behavioral Intervention – that many families cannot
persuade their school districts to pay for it.

Brian and Juliana Jaynes of Newport News, Va., can testify
to that. As a baby, their son, Stefan, developed normally,
if not ahead of the curve. By age 2, his vocabulary was
well over 100 words. He knew his address and his colors,
and he spoke in short sentences. But soon after his second
birthday, he started to regress, forgetting the words he
once knew.

His parents suspected a neurological disorder. A specialist
confirmed their suspicions, telling them Stefan was
severely autistic and urging them to get intensive therapy
for him.

Instead, school officials placed Stefan in a
special-education preschool, where, the Jayneses say, he
rapidly regressed. (The school district says the placement
was appropriate.) After the neurologist told the frantic
couple that their son might have to be institutionalized,
they removed him from the preschool and began 40 hours a
week of behavior therapy at home.

It cost them more than $100,000 over three years. Today,
Stefan, 11, attends a school for autistic children and has
vastly improved his language, social and self-help skills.
He can say some simple sentences and communicate his needs;
perhaps most important, he spends more and more time
interacting with his family, and less time in his own
world. The behavior therapy, his father said, "has brought
about an awakening in this little boy's personality that is
truly a miracle."

In recent years, four leading institutions – the American
Academy of Pediatrics, the American Academy of Child and
Adolescent Psychiatry, the Surgeon General and the National
Academy of Sciences – have called for early intervention,
including one-on-one therapy, for children with autism. A
panel of experts convened by the academy last year
recommended a minimum of 25 hours a week, 12 months a year.

But Dr. Catherine Lord, the panel's chairwoman and a
psychology professor at the University of Michigan,
estimates that fewer than 10 percent of children with
autism are getting the recommended level of therapy.
"Almost everywhere, schools will say kids are getting
services," she said. "But what they're getting varies
enormously."

Because the young nervous system has a great deal of
plasticity, many experts believe that early intervention
enriches neural growth.

Dr. David L. Holmes, president of the Eden Institute, an
autism center in Princeton, said, "If you have a child with
autism who's not wired correctly, and we allow that to
continue without intervention, those neuropathways will
become fixed, and it becomes far more difficult to undo
that tangled mess."

Autistic children lose the ability to learn by observation,
something other children do constantly. Behavioral therapy
is aimed at teaching these children how to learn. Teaching
an autistic child to wave goodbye, for instance, can take
40 hours of repetitive lessons.

There are several kinds of therapy. The most popular – the
one Stefan Jaynes receives – is applied behavioral
analysis, in which a therapist asks a child to perform
small tasks and then offers feedback to reinforce correct
responses.

Other programs use sensory integration therapy, based on
the theory that autistic children have defects in
processing the messages from their five senses; auditory
integration therapy, which assumes that some are
oversensitive or undersensitive to sound or have problems
processing sounds; speech therapy; and group programs.

The federal education law leaves decisions about therapy to
professionals and parents. But administrators say parents
often demand far more therapy than the experts recommend.
"Is the school system going to override teachers, and
substitute the teacher's decision with the parent's
decision?" asked Bruce Hunter, associate executive director
for public policy at the American Association of School
Administrators in Arlington, Va.

The biggest obstacle is budgetary. "When you're looking at
limited resources in a school district, sometimes the
available resources drive what services schools will
propose to offer," said David Egnor, policy director at the
Council for Exceptional Children. "It's simply pragmatic."

Mr. Hunter added: "The problem all along in special ed is
that you have a chronic shortage of money that is
exacerbated by downturns in the economy, which is when it
really gets bad. You get the joy of taking the money from
one group of children and spending it on another group."

Under law, the federal government may reimburse states up
to 40 percent of the extra cost of educating a child with a
disability. But this year, Congress is paying just 17
percent, or $7.5 billion. President Bush has proposed
adding $1 billion next year.

"The federal and state governments ought to pay attention
to these children who have disabilities and need to be
educated and need special treatment, and that costs money,"
said Representative Dan Burton, Republican of Indiana, who
has an autistic grandson.

But the chairman of the House Committee on Education and
the Workforce, John A. Boehner, Republican of Ohio, opposes
full financing of the act until major changes are made. He
and others have called for reforms in identifying students
with disabilities – minority students are classified far
out of proportion to their numbers – and in the daunting
paperwork for the schools.

Many experts believe society would pay less in the long run
if children received appropriate early intervention. An
article in Behavioral Intervention in 1998 found that if
100 children were given early intensive intervention and 40
of them had only partial improvement, the public would save
$9.5 million over their school years, ages 3 to 22.

Most insurance companies do not pay for therapy for
developmental disorders like autism, though a few companies
offer reimbursement as part of their health benefits.

Another obstacle to treatment is a lack of specialists.
Public schools have a shortage of more than 12,000 special
education teachers, and the number is expected to grow as
many teachers retire or leave the field.

Advocates say the supply of teachers trained to deal with
autism is even shorter, so schools are forced to rely on
expensive outside specialists.

Even parents who decide to pay for treatment have trouble
finding private specialists. Autism schools and private
behavioral therapists typically have waiting lists of more
than a year. This forces parents to set up their own
in-home school and hire teams of people to provide the 20
to 40 hours a week of therapy. Many parents train
themselves in the behavioral therapies, and then train
college students, whom they can hire for considerably less
money than specialists.

Yet another obstacle to early intervention is delayed
diagnosis. Autism is most commonly diagnosed at 20 to 36
months, but experts say the signs often surface earlier.
Many families experience delays because pediatricians often
dismiss their concerns.

The growing awareness of autism may ease that problem.
(Autism is now diagnosed in 1 out of 600 children, by most
estimates.) But without appropriate therapy, early
diagnosis does little but create frustration for parents,
as Stefan's mother, Juliana Jaynes, recalled recently. "I
had the doctor telling me that every moment counts," she
said. "There's that horrible feeling of time slipping away
and nothing being done."

http://www.nytimes.com/2002/10/22/health/children/22AUTI.html?ex=1036255532&ei=1&en=07d0fd4c840e9437

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[Susan Adirim]

We are looking for new therapists as we continue to add hours.

Asher is engaged in an intensive program directed by EAP. We are moving up from 32 hours. Asher is 3 years 3 months.

We are located just off the Broadway B line bus route close to the "gates" of UBC.

Email at jerome@adirim.net or call Susan at 604 731 5141

[Susan Adirim]

Dogs

Any opinion on border collies? I guess they would be good with a wondering kid.

Jerome

[Susan Adirim]

We will need some parents to help setup a workshop for late September. If
you are a parent of a WEAP child we would be particularly interested in your
input

Jerome Adirim
604 273 4557 x25

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