Prevention

Given the severe impact FASD has on its victim's entire life, prevention is obviously the optimal approach to the condition. In March 2009, the CDC and the Department of Health and Human Services released a report of the National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect, which discusses future directions for addressing the problem .

Women are increasingly aware that drinking during pregnancy is not safe-with, for example, 62% of women reported knowledge about the cause of FAS in 1985 and 73% reported awareness by 1990. However, studies of the impact of warning labels on bottles show little effect: one found a short-lived, modest decrease in drinking amongst African American women attending a prenatal clinic eight months after the labels were introduced, another found no association between awareness of the labels and drinking by pregnant women in the general population .

Prevention efforts aimed at heavy-drinking pregnant women do have some impact: screening for drinking problems alone and providing brief advice on drinking habits has been show to be effective in significantly reduced alcohol consumption amongst this group in one study .

One large trial of a similar “brief intervention” found that pregnant women who received this kind of advice were nearly twice as likely at those who did not to cut their drinking by 20% or more.

Teaching women how much they are actually drinking by using drinking glasses and computerized calculations of alcohol content in various drinks and discussing the actual birth defects linked with prenatal alcohol exposure also appears to help.

As with other interventions with heavy drinkers or drug-takers, it is important for those attempting to reach these stigmatized groups to be non-judgmental as other approaches seem to drive patients underground. This exacerbates harm to infants by pushing women away from prenatal care. Prenatal care is critical, both because it gives health professionals further chances of reaching women and helping them stop drinking and because it minimizes the chances of other damages to the fetus.

Since women who drink during one pregnancy are likely to drink during their next, and since those who do have FASD children as a result are more likely to have a more severe case in their next pregnancy, researchers have targeted women known to have consumed alcohol during at least one pregnancy.

A study followed 300 such women for up to five years, 96 of whom had one or more babies during the follow up period. Their average alcohol consumption was 16 drinks a week when they conceived the first child which brought them to the researchers' attention. Half were given a cognitive/behavioral intervention which advised them on the dangers of FAS, helped them set goals on reducing or preferably eliminating drinking while pregnant and gave them advice on how to meet their goals. The other half, the controls, were simply told that their baby would be healthier if they abstained while pregnant.

While 25% of controls drank at least 4 drinks a week, only 11% of the experimental group drank that much or more: less than half the control group's rate. And, amongst the women who did drink during these pregnancies, the amount consumed was half as much in the experimental group compared to the controls. The treatment group also had healthier babies as measured by neurological tests at 13 months. They had fewer babies with low birth weights and fewer premature babies .

Prevention efforts that would mitigate the damage done to fetuses if a woman cannot stop drinking while pregnant are controversial-however, animal research already suggests two potential medications—both already available for other uses-- that could possibly make FASD less likely. Buspirone, the anti-anxiety medication, for example, reduces some of the damage to the serotonin system caused by alcohol in rodents, as noted above.  Also, a 2009 study found that supplementing the diets of rats with the nutrient choline reduced many of the effects of alcohol on fetal development and eliminated behavioral effects of exposure .

Whether these drugs themselves are safe in pregnancy is not yet known. They may cause other side effects that this research did not pick up and of course, they may have different effects on humans. Political opposition against making drinking "safer" for pregnant women might prevent development of such medications - as might the liability fears pharmaceutical companies already have about developing any drugs for use in pregnancy.

However, given the extreme nature of the damage caused by FASD, if such a drug worked without side effects, such problems might be overcome.

Key Questions

Though research is beginning to help us understand FASD, very little is known about the true rates of these disorders in the population and whether they are increasing or decreasing.

The Centers for Disease Control and Prevention tracks drinking during pregnancy sporadically via its Behavioral Risk Factor Surveillance System Survey. The latest available figures show that 12.2% of women who were pregnant reported any drinking and 1.9% reported binge drinking, or having five or more drinks on a particular occasion in 2005, which is the most dangerous pattern in terms of FAS . This has not changed significantly since 1991.

Better ways to keep all women planning a child aware of the disorder and how to prevent it are also necessary, as is greater outreach to known heavy drinking women who become pregnant. FASD does not receive much media coverage these days, which could reduce public awareness of the severity of the problem and the need to prevent it.

Alcoholism in general is a difficult condition to treat-though many people recover, there is a hardcore group of people for whom it is a lifelong relapsing condition. Research is needed on the best treatment for women in this group - either to help them avoid pregnancy until they are in stable recovery or to help them begin alcohol abstinence rapidly if they do get pregnant. Because this treatment-resistant group is exactly the group most likely to have repeat FASD babies, research should be conducted on medications that might reduce the harm to these children if their mothers cannot or will not stop drinking.

Another big unanswered question is what works to help people with FASD and their families minimize the effects of this condition on their lives. There's anecdotal evidence about what works from the community of parents who support each other in dealing with these difficult to raise children-but systematic research to find the best ways to help them in school, with work and with socializing is sorely needed. Better data on medications like stimulants and behavior treatments like Multisystemic Family Therapy would also help answer these questions. A 2007 study systematically reviewed all the literature on “challenging behavior” of children exposed to substances of abuse, and found just three of them addressed intervention (and all showed some success).

The need for research on how to help adults with FASD is acute. Many require a great deal of support in order to be able to manage their lives, but what kinds of help are the most effective and the least restrictive are not known. How to deal with conflicts between the civil liberties and rights of people with FASD given the problems they have in controlling their own behavior is an area of special concern, presenting difficult ethical problems.

Diagnosis is also an area that needs more research. Research suggests that diagnosis before age six by itself helps prevent against secondary disabilities- but many people with FASD are not diagnosed until much later. Parents, physicians, educators and law enforcement personnel are often unaware of FASD's symptoms and those who should screen for it often don't. As a result, many people with FASD are incarcerated or given inappropriate psychological or psychiatric treatment. Research is also needed to ensure against late diagnosis, misdiagnosis and over-diagnosis because of the subjective and morally charged elements of many FASD symptoms.

Finally, because people with FASD are likely to have contact with the criminal justice system at some point in their lives-and because they may be responsible for a disproportionate amount of petty crime and drug-related crimes- criminal justice authorities need to find effective ways to held people with FASD change their behavior. Drug courts, especially those with high levels of supervision, may prove useful; but they could also result in more people with FASD being incarcerated as such people are more likely to relapse than others with substance abuse problems.

Learning how people who have problems with executive function can be taught to manage their lives could be the critical element to solving most FASD-related criminal justice problems, since people with various impulse control disorders are disproportionately represented in prison populations. Like people with FASD, they are also over-represented in those who are sent to prison after noncompliance with treatment in drug courts. Understanding how to treat FASD effectively might help this larger problem as well, but right now, there is insufficient empirical evidence about what works and what doesn't.

FASD is an enormously complex problem-- but finding effective prevention and treatment could have huge benefits, not just for families struggling with the disorder, but also for other women with alcoholism and other children with similar learning and executive function disorders. Effective solutions could have a large impact on criminal justice and addiction treatment results more generally as well.