Aid for autism

Early intervention works - but few receive it

January 25, 2005|By C. A. Garland and Brenda Harris

AUTISM AND related neurological ailments have reached overwhelming proportions in the United States, affecting perhaps 25,000 additional children a year, or about one in 200.

There is growing evidence that the effects of those disorders can be substantially mitigated in most affected children through various types of intensive early childhood interventions, allowing for productive and fulfilling lives.

Yet most private insurance companies claim that there is no scientific consensus about how to treat autistic disorders and, therefore, that they have no obligation to pay for treatments. Since all major treatments aim for 25 to 40 hours a week of largely one-on-one therapy, annual costs are typically $25,000 to $100,000.

Further clouding who should pay, autism and related neurological problems - pervasive development disorder (PDD) and Asperger's Syndrome - are essentially medical problems requiring educational treatment. Anecdotal evidence suggests that dietary interventions may help many children. But they are generally secondary to the drills, play sessions and other techniques used to draw out individuals emotionally, linguistically and cognitively.

While many school systems provide supplemental or substitute programs for children facing these challenges, they intervene late in the game; autistic brains are most easily reprogrammed or rewired to compensate for their innate weaknesses in the prekindergarten years.

Not only is private health insurance lacking for most children needing these types of services, but there also is no public financing. Some localities provide two to five hours a week of early intervention. It is better than nothing, but is only about 10 percent to 20 percent of what the current state of research recommends.

Our country has no second thoughts about spending $100,000 on a 90-year-old to extend his or her life by a year or two. But it refuses to provide a comparable amount of funding to rescue a toddler from what could be 90 years of disabled life. And the direct costs to the country of such a lifetime of disability can, according to recent studies, easily exceed $1 million per person in special education and institutional expenses.

There are different ways to treat autism in young children, based on their individual needs, strengths and weaknesses.

Some programs, most notably applied behavior analysis (ABA), are based on behavior modification techniques, which break down tasks and learning into simple steps (not unlike how Helen Keller was taught). Others, such as "floor time," focus less on making up ground in delayed speech and other cognitive abilities and more on encouraging a child's creativity and interpersonal skills. They encourage autistic children, who are often aloof, to enjoy and seek out interaction with others.

While the approaches may be different, experts are united on several key aspects for treating autism, PDD and Asperger's. They are:

Early intervention is better than late.

More-intensive intervention is better than a go-slow approach (not simply to maximize the rate of learning, but to break bad habits such as repetitive, mechanical, unimaginative play and self-injurious action that usually cannot be schooled out of a child in just a couple of hours a day).

Possibly half of all autistic children can recover enough to be mainstreamed in school, develop friendships, ultimately hold jobs and have good prospects of a normal life.

Even those who cannot aspire to this standard of recovery can do much better than they would have without treatment.

But costs continue to prohibit many, if not most, from getting the treatment they need. Proper autistic treatments are largely the province of the well-to-do. How many working families can afford $25,000 or more a year in unreimbursed costs, especially when families often find that one parent of an affected child must stop working to manage the child's treatment regimen? A diagnosis of autism is, in effect, a catastrophic medical event for which neither the health nor educational systems of this country make provision.

The situation is unconscionable.

As a country, we help students with thousands of dollars in college loans; we provide seniors exquisite medical care; we have a Medicaid program that increasingly covers children when they require traditional medical treatments. Yet we won't pay even $10,000 to rescue a young life.

For $1 billion to $3 billion a year - a fraction of what we spend preparing for a possible epidemic caused by terrorism - the United States could make huge inroads into dealing with an epidemic among its children that is all too real today.

C. A. Garland has a child in an ABA program. Dr. Brenda Harris is a developmental pediatrician at Children's National Medical Center in Washington.

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