By LAURIE TARKAN NY Times
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.”