Op-Ed Contributor - NY Times
Studying Autism Isn’t Enough
             

By CATHRYN GARLAND and MICHAEL O'HANLON
Published: November 21, 2006
Bethesda, Md.



WITH the recent Senate passage of the Combating Autism Act, the House is now poised to
approve landmark legislation to help scientists understand the causes and characteristics of
autism — a spectrum of neurological disorders affecting more than 1 in 200 children in the United
States. If the House does as we hope and passes the act, the National Institutes of Health and
related health research agencies will finally begin to devote the magnitude of resources — nearly
$200 million a year — commensurate with the severity and prevalence of this terribly devastating
set of conditions.

The research emphasis of the act is appropriate, given how little is still known about the causes
and the physiology of autism spectrum disorders, as well as the means by which medical
treatments can reduce autism’s severity if applied early enough. Basic questions like whether the
frequency of childhood vaccines today contributes to autism are still unresolved.

As parents of a child facing these challenges, we applaud those lawmakers and fellow parents
who have done so much to promote this and other initiatives. But research is not enough. We as
a nation must also begin to focus seriously on treating those children who are already afflicted.
At present, we are failing miserably to do so.

In America, you have to be lucky or rich to get proper care for your young autistic child.
Treatment regimens typically cost more than $50,000 annually for preschool children — one
reason proven methods are available to perhaps only 10 percent of afflicted children during
those crucial years. In a few states, like New Jersey, educational systems provide therapy to
preschool kids, but resources vary from county to county. Here in Maryland, our 4-year-old
daughter has received an hour or two of publicly provided help a week; studies show that ideally
up to 40 hours of intensive intervention are required. A handful of states, including Maryland,
have established a Medicaid autism waiver to allow parents of severely afflicted children to obtain
relevant services independent of income.

But limited funds constrain those services even where they exist. Earlier this year, we put our
daughter on Maryland’s autism waiver waiting list — and were told that she was No. 1,519,
corresponding to an expected delay of several years before services would be available.

We are still lucky. Thanks to the farsightedness and generosity of one of our employers, most of
the money needed for our daughter is provided via insurance. But among major American
corporations, only Microsoft, Home Depot and two or three others offer comparable benefits.
Virtually no private health plans do. The Department of Defense has some, though it has been
introducing bureaucratic obstacles to obtaining coverage that could make it inaccessible for most
as a practical matter.

If we do not help these children, we are essentially condemning them to a lifetime of disability,
unemployment and, for many, institutionalization. On human grounds, this is tragic. But it’s also
bad economics. The few hundred thousand dollars needed to do intensive early intervention for
four or five years — while a lot — is only one-tenth the expected cost of supporting someone for
a lifetime on the dole.

Intervention is costly because it is essentially one-on-one. Youngsters with autism spectrum
disorders are hard to engage. They do not closely observe their environment or naturally imitate
the actions of others. Nor do they tend to seek out human interaction and communication.
Overcoming these barriers requires a highly individualized and intensive program. There is broad
consensus, as reflected in previous studies by the National Academy of Sciences and American
Academy of Pediatrics, that early and intensive intervention is critical. The core of most
intervention plans, it is generally agreed, should be a cognitive method engaging the child’s
intellect and emotions and sociability.

Insurance companies and others often deny coverage by arguing that treatment methods are
experimental, but that assertion no longer holds water. Studies now show that 40 percent to 50
percent of toddlers undergoing intensive Applied Behavior Analysis, one of the best-known
methods, can be mainstreamed in regular classrooms without personal aides by the time they
reach school age. (The figure is close to zero for children not given special care.) Most of the
other 50 percent to 60 percent make notable progress too. The applied behavior method breaks
down learning into simple steps with one-on-one tutoring, in a manner somewhat akin to the way
Helen Keller was taught. Other applied behavior approaches involve reinforcing appropriate
behaviors in daily life and creating opportunities for social interaction.

In the early 1990s, Dr. Stanley Greenspan developed a competing method. Commonly known as
Floortime, it focuses on core autism deficits — emotional, social and imaginative abilities — by
harnessing a child’s natural interests and tailoring interactions to specific skills and challenges. It
involves interactive play, as well as activities that vary a child’s environment to teach language
concepts in a realistic way.

At a conference last December at the Brookings Institution, Dr. Greenspan, while making a
strong case for Floortime, also recognized applied behavior’s potential for children on the autism
spectrum. As parents using a blend of approaches with our child, we have been encouraged to
see that they increasingly draw on one another’s insights and activities. (A third cognitive
method, called relationship development intervention, also focuses on core autism deficits.) So
while vigorous debate continues over optimal therapy, there is no longer any doubt that the main
methods work.

Once the Combating Autism Act is passed, and we hold out hope for the next generation, it is
time to rescue the children who already are afflicted. Our options range from mandating that
insurance companies cover therapies documented to work, to trumpeting the example of places
that do provide coverage in the hope others will follow, to expanding autism Medicaid waivers.

The autism community is encouraged by the recent attention to this profound set of disabilities.
But as a nation, we have been letting down 25,000 more children every year. Good will is not
enough.

Cathryn Garland is a director at Discovery Communications. Michael O’Hanlon is a senior fellow
at the Brookings Institution.