A Long-Term Perspective of FAS

In the 20 years since fetal alcohol syndrome (FAS) was identified as a birth defect, relatively few studies have described adolescents and adults with this disability, although FAS is thought to be the leading known cause of mental retardation. Many practical problems exist in accruing a population of adolescent and adult patients with FAS and in following them systematically past childhood. Yet by examining the natural history of FAS, it should be possible to evaluate the long-term needs of these patients and to develop an appropriate set of lifetime interventions suitable to their disabilities. Taking a historical perspective, this article reviews the pertinent literature, describing the findings of several long-term follow-up studies of children with FAS. It raises questions about the needs of adolescents and adults with FAS that should be addressed through future research and public policy. FAS: THE INITIAL RESEARCH FAS is growing up. It is now 20 years since Jones and Smith (1973) coined the term "fetal alcohol syndrome" to describe children who had a specific and visually recognizable pattern of characteristics, and in July 1993, the first baby in the world to receive a diagnosis of FAS at birth celebrated his 20th birthday (figure 1).(figure 1 omitted) Children with similar characteristics had been independently identified in France (Lemoine et al. 1968) and in Seattle (Jones et al. 1973) as a specific subgroup of children born to alcoholic mothers. The characteristics of FAS were identified as growth deficiency; specific physical anomalies, including a characteristic facies (figure 2); and central nervous system (CNS) dysfunction. The CNS manifestations include delayed development, hyperactivity, motor incoordination, learning or attentional problems, seizures, mental retardation, and/or microcephaly (small head). These early insights on FAS suggested a biological cause for some of the problems seen in children of alcoholic(1) mothers--and indicated that these problems could be prevented if women did not drink alcohol during pregnancy. Two decades of laboratory research have validated these early findings on the causes of FAS. For example, experimental research has shown that alcohol is teratogenic(2) across a wide variety of species and conditions of exposure, and it is the most commonly used known human teratogen in the world. Alcohol also causes FAS, with an estimated prevalence of 1-3/1,000 live births (National Institute on Alcohol Abuse and Alcoholism 1990). EARLY RESEARCH AND PREVENTION EFFORTS The early clinical reports of FAS by Lemoine and colleagues (1968) in western France and Jones and colleagues (1973) in Seattle were soon replicated by reports by Majewski and colleagues (1976) in western Germany, by Dehaene and colleagues (1977a) in northern France, and by Olegard and colleagues (1979) in Sweden. Like the initial reports, all of these studies in the 1970's described patients with FAS who were infants and young children. Because these children with FAS were mostly functioning within the borderline and retarded range of intellectual development. FAS soon became recognized as one of the three most prevalent causes of mental retardation with a known etiology-and the only one that was entirely preventable. This knowledge stimulated the development of important programs in the late 1970's, designed to demonstrate methods to prevent FAS and to intervene in maternal alcohol abuse during pregnancy (Rosen et al. 1980; Rosett and Weiner 1981; Little and Streissguth 1981; Little et al. 1984, 1985). The United States Government initiated two important policies: an official government warning by the Surgeon General against drinking alcoholic beverages during pregnancy or when planning a pregnancy (Public Health Service 1981), and the labeling of alcoholic beverage containers with a warning about the risk of birth defects associated with drinking alcohol during pregnancy (Public Law 100-690, 1988). …