Improving the response to FASD

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.”

Wenger adds that the prevention message shouldn't stop with women. “Whether you have a man or a woman in treatment, FASD should be part of the story. If you really want a healthy baby, the man shouldn't be drinking either,” she adds, noting that alcohol use by men has been linked to infertility, increased risk of miscarriage and negative health outcomes for the child.

Treatment programs serve as a particularly important prevention opportunity because the stigma against talking about risky alcohol use discourages the issue from being raised in other settings. “Anyone who has alcoholism in their family-whether it's their child or their parent or themselves-knows somebody who could unwittingly be drinking while they're pregnant. But it's not a subject that families talk about,” says Wenger.

Similarly, the guilt and stigma experienced by women who have children with FASD can be severe. To help support these women as they raise their children, NOFAS and SAMHSA have launched the “Circle of Hope,” a nationwide peer support and mentoring network for mothers who drank while pregnant. Any woman who fits this description can contact NOFAS to be put in touch with a mentor in her geographical region. The Circle of Hope also has begun hosting peer trainings and birth mother summits.

FASD's impact on clients

“Addiction professionals have been treating clients who have been exposed to prenatal alcohol since there was addiction treatment,” says NOFAS's Mitchell. A combination of genetic and disability-related factors put people with FASD at high risk for substance use disorders. Some researchers estimate that about one-third of people with FASD misuse alcohol or drugs, and so a significant number will need treatment. Frequently, their FASD will be undiagnosed.

Failure to recognize FASD in a client can greatly complicate treatment; correspondingly, identification of FASD can help addiction professionals deliver a far more effective treatment experience. “Some of the simple fixes are that they're going to need more structure, more one-on-one time, and someone assigned to them like a big brother or big sister or a counselor who knows about their disabilities,” says Mitchell.

She adds that many components of traditional treatment models might not work well for someone with FASD. For example, activities requiring abstract thinking and highly developed self-awareness-as are often central to lectures and 12-Step meetings-can be difficult and frustrating for clients with FASD. Similarly, sitting still for an hour of group therapy, remembering meetings and rules, and interacting socially with others can pose serious challenges for someone with FASD.

Clinical methods can be effectively modified, however, to help people with FASD succeed in treatment. SAMHSA offers a full, free online course on FASD for addiction professionals, addressing this issue in greater detail. Its comments include:

• Keep meeting times and rules simple and consistent-clients with FASD often have inconsistent memories and are prone to forget about meetings.

• Repeat and reinforce statements often.

• Frequent and short counseling sessions are better than infrequent, longer ones.

• Ensure that treatment goals are concrete and few in number (one to two at a time).

• Provide written materials in very simple language and without distracting formatting or graphics.

• Mentoring and one-on-one counseling are often effective; group therapy can sometimes be overwhelming.

• Recognize the symptoms of FASD so that behavior can be understood in context (for example, someone with FASD may have difficulty understanding personal boundaries).

• Address family issues and stigma associated with having FASD.

Addiction professionals also have a role to play in identifying children with FASD and helping ensure they get proper care. “Counselors are a prime source for recognizing this condition,” says Riley. “If they're seeing women and seeing these women's children, they can be the first source of identification.” An early diagnosis of FASD is associated with better health and social outcomes for children. For example, even though children with FASD often have reduced math ability, executive functioning capabilities (such as goal-setting) and interpersonal skills, parents and teachers can take steps to help a child compensate for these difficulties if they know the underlying problem.

Even certain medical interventions can be tailored specifically for children with diagnosed FASD. For example, attention-deficit/hyperactivity disorder (ADHD) is commonly found in children who also have FASD, but certain medications such as Ritalin (methylphenidate) seem to be less effective for FASD children than for those without it. Also, children with FASD are often eligible for disability benefits.

Dramatic reductions in FASD will no doubt require a public health movement far broader than the nation's addiction treatment system. But FASD prevention advocates maintain that addiction professionals have an indispensable role to play going forward. A better understanding of FASD-plus the use of educational and prevention-focused resources-can help addiction professionals reduce the number of children exposed to alcohol prenatally. But it can also help them provide better treatment to their current and future clients with FASD.

As Mitchell says, “These are things that should be talked about while at treatment. We can change the way we help people with FASD. We can do better.”

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Free resources on FASD for professionals

SAMHSA FASD Center for Excellence

https://www.fasdcenter.samhsa.gov

• Full six-competency Curriculum for Addiction Professionals (CAP I) online course

• “Recovering Hope: Mothers Speak Out About FASD” 60-minute DVD

• “Tools for Success” curriculum for juvenile justice professionals

National Organization on Fetal Alcohol Syndrome (NOFAS) https://www.nofas.org

• Circle of Hope nationwide peer support system for mothers (https://www.nofas.org/coh)

Centers for Disease Control and Prevention (CDC)

• FASD Prevention Toolkit for Women's Health Care Providers

• FASD Competency-Based Curriculum Development Guide

National Institute on Alcohol Abuse and Alcoholism (NIAAA) https://www.niaaa.nih.gov

• Resources for teachers (https://pubs.niaaa.nih.gov/publications/Science/main.htm)

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For Daniel Guarnera's perspectives on behavioral health parity legislation, visit https://www.addictionpro.com/guarnera1108.