An Untreated Epidemic?

Autism spectrum disorder is a medical catch-all classification that includes a range of neurological syndromes. It covers people with pervasive development disorder, Asperger’s syndrome and mild-to-severe “classic” autism. In children, symptoms of autism spectrum extend broadly from minor challenges with social interaction and sensory integration all the way to the kind of complete withdrawal and accompanying physical disabilities most often associated in the public imagination with autism. Autism’s telltale signs include lack of eye contact, sporadic or prolonged lack of awareness of others and repetitive motions and vocalizations. A diagnosis of autism can be the predictor of a lifetime of difficulty for the children and families affected, but it also represents significant costs to local school districts at the front line in the age of autism.

Not too long ago estimates of the number of children with autism were as low as two to five in 10,000. Just two years ago that number was revised to a startling one in 150 by the Centers for Disease Control and Prevention. A new survey published in the monthly Journal of Pediatrics suggests the number of children “on the spectrum” in the United States is as high as one in 91 among all children and one in 58 among boys, a revision corroborated by a parallel study by the C.D.C. That means that 673,000 U.S. children—1.1 percent of children ages 3 to 17—and a comparable number of U.S. families are grappling with autism and the impact that diagnosis has on family life and, not least of all, family budgets.

A C.D.C. statement noted: “These data affirm that a concerted and substantial national response is warranted.” This is the kind of rhetoric we have already heard as the autism spectrum numbers leapt higher. When will that concerted response begin? It is true that new federal money—$100 million—has recently been directed to autism research as part of the economic stimulus package, but even that lofty figure pales in comparison to the commitments made to other, similarly large-scale public health crises. Though it now clearly affects a much higher number of children, autism has historically received only a fraction of the monies devoted to other childhood afflictions. Over the long term, this apparent epidemic will represent an as yet undetermined cost to U.S. society as it attempts to respond to the special needs of children, teens and adults with autism.

One fundamental question needs to be answered immediately: Are these numbers “real” or just a statistical anomaly generated by greater awareness of autism? After years now of rising anxiety because of reports of autism’s increasing prevalence, how is it possible that a public figure as prominent as Kathleen Sebelius, secretary of the U.S. Department of Health and Human Services, still cannot say for sure if the higher numbers recorded by her own researchers merely reflect better reporting and a broadening diagnosis?

If an alarming increase in autism is indeed occurring in our homes, and not just on statistical spreadsheets, then we need to confront this problem as the major health care crisis that it is. Discovering more about what provokes this puzzling neurological syndrome and how it can be treated effectively should be a major C.D.C. priority. Much of the institutional debate surrounding autism spectrum disorder has revolved around its suspected connection to the increasing vaccine load required of U.S. children. More research needs to be done to confirm or deny this hypothesis about the origins of autism before faith in the entire vaccination enterprise collapses. Clearly genetics plays a primary role, but as the numbers pile up the possible effect of so-called environmental triggers like vaccines cannot be ignored.

While a more determined effort to address the causes of autism and develop strategies to prevent it is absolutely necessary, another serious lapse also needs attention: the lack of support for families of autism-spectrum children. Parents of children on the spectrum are growing more confused about how to help their children even as they grow more vulnerable to medical quackery of all sorts. Many have waded through oceans of bureaucratic ridicule or indifference to find treatments they say are working. Such parents find themselves falling into a void between what they believe they can do to help their children and what insurance plans will cover or school districts provide. Many proven therapies are extremely costly but must be paid for out of pocket by parents. With evidence building that early intervention is crucial in the response to autism, families frequently find themselves balancing bankruptcy against the obvious needs of their children. It is a choice they should not be forced to make.

When Jesus said, “Let the children come to me,” it was a gesture of benevolence. It was also an acceptance of responsibility. Autism is not something that happens only to “other” families. These are our children. Let them come to us and be helped or healed, or at the very least be comforted.

This article appears in November 2 2009.