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Improving the response to FASD

September 1, 2009
by Daniel Guarnera
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Addiction professionals can assist in drinking prevention and in services to alcohol-exposed individuals

The adage “An ounce of prevention is worth a pound of cure” is ancient and wise. But even its implied 16-to-1 savings undervalues prevention in cases that are 100% preventable and for which there is no cure. This is the type of case that concerns fetal alcohol spectrum disorders (FASD) prevention advocates. Too many women, they say, risk birth defects and developmental disabilities in their children by drinking alcohol during pregnancy.

Despite nearly 40 years of research, prevention advocates worry that both the public and the health care community still suffer from widespread ignorance about FASD. Advocates believe that addiction professionals have a unique and critically important role to play in improving the public health response to FASD and in helping those who are affected live healthier lives.

FASD is an umbrella term for the range of health effects that can result from prenatal alcohol exposure. When a pregnant woman consumes alcohol, some of it passes through the placenta into the fetus. The fetus is unable to process and expel alcohol as quickly as the mother and so it lingers, potentially inhibiting neuron connections in the brain and affecting the development of other body systems. Research shows that alcohol use is also associated with heightened risk of stillbirth and miscarriage.

The most severe and well-known form of FASD is fetal alcohol syndrome (FAS). FAS is characterized by growth deficits, central nervous system abnormalities (structural, neurological, or functional), and distinctive facial features such as a thin upper lip, smooth philtrum (the groove between the lip and nose) and shorter eye openings, all of which have been recreated experimentally in mice, dogs and primates exposed to alcohol in the womb. The physical dysmorphia often become less noticeable as children age, making late-stage diagnosis more difficult. FAS is most common in cases where there is frequent binge drinking during pregnancy.

Increasingly, however, researchers are learning more about the effects of fetal alcohol exposure on children with forms of FASD less severe than FAS. “The majority of the kids with FASD don't have all the classic features to get the diagnosis of FAS-some may have some of the features, others may not have any. Yet they still seem to have behavioral problems from childhood on upwards, and there are behavioral profiles to help us identify them,” says Edward Riley, PhD, Director of the Center for Behavioral Teratology at San Diego State University.

Non-FAS fetal alcohol spectrum disorder symptoms can include a wide range of physical, mental, behavioral, or learning disabilities. Because these disabilities can manifest in so many different ways, children with FASD are at particular risk of being misdiagnosed or undiagnosed, according to Riley.

The first U.S. Surgeon General advisory that warned women not to drink any alcohol during pregnancy came in 1981, and it was reissued in 2005. Nevertheless, recent data from the Centers for Disease Control and Prevention (CDC) and the Substance Abuse and Mental Health Services Administration (SAMHSA) find that 9 to 12% of pregnant women report consuming alcohol, and 3 to 4% report binge drinking (more than five drinks on one occasion). Alcohol consumption in early pregnancy is of particular concern, since half of pregnancies are unintended. “Not every FASD mother is an alcoholic,” says Sis Wenger, President and CEO of the National Association for Children of Alcoholics (NACoA). “They might be binge drinking without even knowing they're pregnant, which is why the prevention message needs to say, ‘Even if you might get pregnant, don't drink.’”

FAS births are estimated at 0.5 to 2 per 1,000 (roughly equivalent to the prevalence of other common developmental disabilities such as Down syndrome). About 1 in 100 children have FASD (40,000 children born each year).

Educating women-and men-in treatment

Women who have struggled with alcohol abuse or dependence are at heightened risk of drinking while pregnant. FASD prevention advocates therefore see addiction treatment programs as important sites for education.

“The topic of FASD should be included in any curriculum that's being taught,” says Kathleen Tavenner Mitchell, Vice President of the National Organization on Fetal Alcohol Syndrome (NOFAS) and a licensed clinical alcohol and drug counselor. “Every woman in every modality of treatment should leave there having been informed of the potential hazards of using alcohol and having unprotected sex.”

Mitchell believes that lack of knowledge about FASD among professionals poses the greatest barrier to effective integration of prevention efforts in treatment programs. Fortunately, extensive training and educational materials for treatment providers are available free of charge from government agencies including the CDC, SAMHSA and the National Institute on Alcohol Abuse and Alcoholism (see box). These include materials designed specifically for treatment settings, including posters, brochures and DVDs (such as the highly regarded “Recovering Hope” film, which includes a discussion guide).

NACoA's Wenger agrees that providers would be well served by educating themselves about FASD. “We always think ‘treatment,’ and we're programmed to think ‘treatment.’ But we need to re-program ourselves to think prevention and treatment,” she says. “Clinical people often don't want to get into that, they're not trained to get into that much of the time, and they have their hands full with the person sitting in front of them. But clients and families need both.”