A Cogent Case for Precise Autism Population Studies

Newsday, the Long Island, New York-based newspaper, today published an editorial that outlines in clear and pragmatic terms the urgency for Long Island to develop an accurate count of how many people have autism spectrum disorders. The argument focuses on the Long Island region, but the reasoning applies to the United States as a whole. The key reason: we need to know the extent of the challenge facing us, so we can figure out what to do and how to pay for it. The editorial which you can read by clicking here states, in part:

Causes are hotly debated. Some scientists are focusing on a genetic mutation as a possible cause. Others say that childhood vaccines or environmental toxins may be involved.

Regardless of cause, evidence that a growing number of children are being diagnosed as autistic is everywhere. Agencies on Long Island that provide social, educational and training services for children and adults with autism can't keep up with the growing demand. Residential facilities in Nassau and Suffolk report waiting lists ranging from two to five years.

But the lack of standard reporting requirements for schools or pediatricians means that agencies and schools don't know what they face, even in the immediate future. There is a glaring lack of hard data—actual figures—on the incidence of autism among children and adults in specific regions and communities on Long Island.

Without such information, it's hard to plan for services or to provide funds for them—even though it's apparent that the problem is growing to such an extent that some advocates call autism a major health care crisis with no end in sight.

The Newsday editors are diplomatic; "hard to plan" is an understatement, as parents of children on waiting lists for services now can attest. A lack of options for education, social support services, employment training, housing—just about every aspect of life—makes long-term planning like a steep climb in dry sand for most families.

The editorial, a welcome sign that awareness of the autism challenge is spreading, calls on Congress to appropriate funding for the Combating Autism Act signed into law in December 2006, and also urges the Centers for Disease Control to make more precise autism diagnosis figures available to Long Island. The newspaper suggests the creation of a council that can coordinate services among state, county and local service agencies that aren't doing enough of that now. The piece concludes:

But above all, along with the awareness of autism's manifestations, there needs to be valid information about its prevalence in every region, Long Island among them. Without such basic data, the extent of the problem will remain as puzzling as its causes. That's no way to deal with a disorder that can wreck the lives of so many.

Newsday's editorial follows up on articles by reporter Delthia Ricks. In one of her pieces, Ricks talked to genetics researchers at Cold Springs Harbor Laboratory about what they believe is promising research into the causes of autism spectrum disorders. Read "Researchers: New Understanding of Autism Near," by clicking here.