Whatever one thinks of the record of the 109th Congress in general, in this holiday season it is worth pausing and thanking our senators and representatives for an impressive accomplishment that touches very close to home for more than 1 million Americans affected by autism disorders as well as their families and friends.
To be sure, as with many other national priorities, Congress has so far failed to fund the programs it has just authorized. But early in December, the House passed the Combating Autism Act, as the Senate did earlier, paving the way for the president’s recent signature and a much more intense national campaign against autism in the years to come.
Autism spectrum disorders are the most prevalent and rapidly increasing set of serious developmental challenges facing American children today. More than 1 in 200 are believed afflicted, and since the condition affects males disproportionately, that means about 1 in 100 young boys can be expected to display some type of autistic problem early in life.
Although debate continues over how much of the increase is due to better diagnostics, these statistics constitute much more than a tenfold increase in the reported rate over the last quarter-century.
Children and adults with autism spectrum disorders face a wide range of challenges and a high variability in the severity of their disabilities. But in general, they are challenged by social settings, have trouble with human relatedness, and display tendencies toward rigidities and inflexible thinking. Many are unable to go to mainstream schools; only a modest percentage ever hold well-paying jobs or marry.
The Combating Autism Act focuses primarily on future generations. It is not principally a law to help provide therapy, but focuses primarily on research and education. Specifically, it authorizes over five years:
- $90 million for surveillance of and research on autism and other developmental disabilities by the Centers for Disease Control and Prevention.
- $210 million for federal and state autism information, education, early detection and intervention programs.
- $635 million for expanding, intensifying and coordinating autism research at the National Institutes of Health.
These dollar amounts would roughly double the scope and intensity of ongoing research and education. As we seek to figure out what causes autism almost surely a combination of genetics and environmental factors, with the latter possibly ranging from today’s frequent early childhood vaccinations to heavy metals that enter the body in various ways to myriad other possibilities such robust research funding will be needed. And in a country where perhaps half of all pediatricians continue to miss telltale signs of autism spectrum disorders in the crucial toddler years when therapy can do the most good, we clearly need to spread the word about how to recognize these devastating conditions.
As we work to fund what is authorized by the Combating Autism Act, we also need to turn our attention to the often neglected public policy question of how to help those already affected. This agenda includes everything from improving the quality of adult care for those needing intensive help throughout their lives, to helping autistic individuals find and keep work for which they are best suited, to making therapies more available to young toddlers in the crucial preschool years when the most can be done to help them.
Perhaps only 10 percent of afflicted toddlers receive the intensive intervention typically 25 or more hours a week of intensive one-on-one work that the National Academy of Sciences and others have documented as necessary. Health insurance companies do not cover such treatments on the inaccurate grounds they are experimental; while some state and local programs help a few kids, virtually none are funded at anywhere near the levels needed to address this problem systematically.
One can address this problem in multiple ways and some combination will probably be needed. One approach would try to encourage health insurance companies to cover effective therapies documented to work (almost half of toddlers receiving applied behavior analysis or ABA wind up being mainstreamed in school, even if they typically continue to face big challenges thereafter). This process could be catalyzed by steps such as encouraging the Federal Employee Health Benefit program to join the Defense Department in providing an ABA benefit.
In the meantime, programs like Maryland’s Medicaid autism waiver should become the model for other states (and given more financial support). They cover intensive therapies (typically costing $50,000 a year or more for several years) regardless of whether a family’s income makes it eligible for most Medicaid services. Also, those few U.S. companies like Discovery Communications, Home Depot and Microsoft that provide support for autism services deserve praise and emulation.
So thanks to this Congress and to President Bush. But one thing is also clear: While we have some reason for joy this holiday season among those focused on America’s autism epidemic, far more needs to be done, and soon, to help the 25,000 additional kids affected by autism each year in the United States.