Autism and Hope

Autism spectrum disorders are the fastest-growing severe developmental disabilities facing children—and thus future generations of adults—in the U.S. today. More than 1 in 200 young children may now be affected by autism, pervasive development disorder, or Asperger’s syndrome.

While highly variable in type and severity, these disorders tend to include obsessive behaviors, excessive rigidities, limited social skills and communications deficits.

There is some good news. Over the last 20 years, early intervention regimens for autism spectrum disorders (ASD) have become much more effective. Given intensive early intervention, ideally before age 3, many children with ASD now have prospects for productive, fulfilling lives with meaningful personal relationships and career opportunities. Even the more severely challenged can do much better than before.

However, availability and affordability of intensive early intervention vary greatly in our country. More than 100,000 American children under age 5 are believed affected by ASD, but only a small fraction—perhaps 10 percent—get the rigorous therapy the National Academy of Sciences, American Academy of Pediatrics and other professional groups have documented are needed.

Enormous public policy challenges need to be overcome if early and intensive interventions are to be made available to every child on the spectrum. Notably, even where available, the major autism therapy methods are generally not affordable. Costs can reach or exceed $50,000 a year. They are not routinely covered either by health insurance or by federal, state and local programs. Some localities provide coverage, but it is often incomplete, reaching only some affected children or providing perhaps 10 to 20 percent of the recommended intensity of intervention (optimally 25 to 40 hours a week).

An example is found in two of us who have a child on the autism spectrum living in Montgomery County, Md. Because our daughter was deemed relatively high-functioning, she was offered only two hours a week of intervention when diagnosed at age 2. Private insurance paid for another hour a week of speech therapy. The other 90 percent of her treatment, which included one-on-one tutoring (through a method known as Applied Behavior Analysis), as well as various exercises targeting her social and play skills (known as Floortime and Relationship Development Intervention), was funded entirely out of pocket. But we are lucky; we can scrape by and afford it. Many clearly cannot (and if the Congress cuts Medicaid to pay for Katrina relief, even fewer will be able to do so).

Now contrast our situation to those of some families in Los Angeles. That is where one of us (Barbara Firestone) oversees the Help Group that includes a wide range of specialized day school programs serving 550 children with ASD.

These programs apply numerous specialized education strategies and therapies, including those noted above. These services are offered at no cost to parents whose children are deemed to need the program by local school districts.

The HELP Group’s Young Learners Preschool is dedicated to children with ASD ages 3 through 5. This innovative, intensive, six-hour daily, five days per week program provides a comprehensive, individualized program for each child. But this is still the exception, not the rule.

Several policy initiatives are possible to redress this sorry state of affairs, and in fact some combination of them is probably optimal. They could include the following illustrative ideas:

• Support for ongoing efforts to have the Office of Personnel Management mandate that federal government health plans cover certified intervention programs carried out by qualified professionals—in hopes the idea will then spread to the broader insurance market.
• Federal legislation mandating coverage of treatment costs by all health insurance plans (akin to the federal legislation on parity for mental health conditions of the 1990s, as well as federal mandates on minimum length of hospital stays after childbirth). Even if not passed promptly, proposed federal legislation may be very useful as a model for state legislation.
• Efforts to ensure that, under the IDEA legislation and/or the EPSDT provisions of Medicaid, an austic disorder diagnosis leads to assurance of available services for any afflicted child. These laws and regulations often do not have their promised effect. Parents end up paying for, or children going without, services not only promised but mandated by law.

Autism and hope are no longer mutually exclusive. While we press to find causes and cures, we must also emphasize the compelling need to ensure effective treatment strategies are available as soon as possible to all children with autism spectrum disorders across the United States.

Mr. O’Hanlon and Dr. Firestone will host a Dec. 16 “Autism and Hope” conference at Brookings focused on the issues raised above.