Fetal alcohol spectrum receives attention at National Institute on Alcohol Abuse and Alcoholism session

Research is indicating that fetal alcohol spectrum (FAS) disorders may be far more prevalent than previously realized, said the acting director of the National Institute on Alcohol Abuse and Alcoholism (NIAAA) recently.

And at the same time, the disorders are getting less attention than they deserve, asserted Kenneth R. Warren, PhD, an expert on alcohol and pregnancy and a long-time senior administrator at NIAAA.

"Active case ascertainment" studies, some of which test entire populations of children entering the first grade, are showing prevalence up to 10 times greater than clinic-based prospective studies, other clinical studies, and registries, he said.

He cited a 2009 published study by Philip May, PhD, of the University of New Mexico, and colleagues that looked at first-grade children in a Midwestern city and found that there were 6 to 11 cases of FAS per 1,000 children studied. That compares, he said, to the 1996 Institute of Medicine estimate of .5 to 2 cases per 1,000.

That 2009 study, he noted, also found that when FAS and partial FAS are combined, the rate was 14 to 25 per 1,000, which he pointed out is 1.4% to 2.5% -much more prevalent than anticipated.

That's greater than the estimates for autism spectrum disorder, he said, which is currently receiving significant attention. The Centers for Disease Control and Prevention estimate that an average of 1 in 110 US children has autism spectrum disorder. However, FAS disorder problems are entirely preventable.

NIAAA currently has a project for active case ascertainment in at least 4 US communities, and the World Health Organization is planning a number of such studies in low- and middle-income countries in central Europe and in some areas in Africa, Warren said.

He noted that researchers doing these studies in the United States are finding that some school systems want to cooperate, but others say they don't want the children identified because the system can't afford to provide services for them.

One of the major research challenges, said Warren, is to improve diagnostic capability for the full range of FAS disorders. They are underdiagnosed, he said, because, "The facial features are subtle, particularly in newborns, and the CNS [central nervous system] deficits that are necessary for the diagnosis may not be obvious in individuals who are below the age of 3 years."

Decrying the current lack of publicity about FAS, Warren said that NIAAA did campaigns on the subject in the 1970s and 1980s, but many people who are having babies now are too young to remember those efforts.

One message for pediatricians, said Warren, is to keep the possibility of FAS disorder in mind, even more so than they have in the past.

And, he said, because pediatricians see a child who is already born, they may be more likely to get information retrospectively from the mother about drinking during the past pregnancy, particularly if there is concern for the well-being of the child.

"The kids who are identified early and receive appropriate types of treatment clearly do better in life," said Warren, noting that it is also important that the school systems be aware of the problem, "so they do not suspect that these children are not learning just because they have a behavior problem."

Another big issue for children with FAS disorders, Warren said, is that they are sometimes diagnosed as having attention-deficit/hyperactivity disorder (ADHD). The medications and other treatments for ADHD are not effective in children with FAS, he stressed.

He also said that by recognizing FAS, pediatricians could be crucial in the prevention of future FAS births. When a mother has a FAS child and continues to drink, there is a high likelihood that any future children may be affected.