The Person Behind the Face of Fetal Alcohol Spectrum Disorder: Student Experiences and Family and Professionals' Perspectives on FASD

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This article describes the individual experiences of 5 students with Fetal Alcohol Spectrum Disorders (FASD) living in rural and urban Alaska. The article is based on the results of a 3 year qualitative study using interviews with and observations of the students, members of their family, and educational and medical professionals with whom they are involved. Findings highlight several major themes that include: (a) the person behind the face of FASD; (b) experiences of students with FASD including situations of competence and vulnerability; (c) anticipated trajectories that lead the students towards experiences of separateness and isolation; and (d) the social and cultural stigma of FASD. The article concludes with recommendations that service providers, educators, and policy makers can use to improve the education and community life for students with fetal alcohol spectrum disorders.

Thirty years ago a diagnosis of Fetal Alcohol Syndrome (FAS) or other alcohol related birth defects was rare. In 2004, however, such a diagnosis is not unusual in towns, villages, and cities in Alaska and in an increasing number of other locations. A study by the Center for Disease Control and Prevention (CDC, 2002) indicated that the state of Alaska ranked highest in live births of infants with Fetal Alcohol Syndrome (FAS). The CDC study monitored the reported cases of FAS in newborns during 1995-1997 in Alaska, New York, Arizona, Wisconsin, and Colorado. Alaska had the highest reported rate of Fetal Alcohol Syndrome at 1.5 per 1,000 live births. Approximately 126 infants are born each year in Alaska who are affected by maternal alcohol use during pregnancy. The reported prevalence of FAS among Alaska Natives was the highest of all reported cases in Alaska and the other states (e.g., 5.6 per 1,000 live births).

The rise in the number of children with Fetal Alcohol Spectrum Disorders (FASD) in Alaska lead to the development of a five year project, funded by State of Alaska, Department of Health and Social Services, Office of Fetal Alcohol Syndrome aimed at providing diagnosis, surveillance, and conducting prevention activities across Alaska. This article presents findings from a 3-year evaluation of the state project designed to examine the education and community experiences of 5 students with FASD. The study includes the perceptions of family members and professionals.

In the past, with regard to individuals labeled FAS or FASD, research has centered narrowly around the areas of identification, incidence, prevalence, and diagnosis of the disorder of FAS while giving little emphasis on the individuals themselves, their experiences or needs. For example, research related to identification of the disorder emerged in the late 20th Century (Streissguth, 1997). Among the early identifiers of this condition was Dr. William Sullivan, who in 1899 published a study of 120 female "drunkards" at the Liverpool prison in Liverpool, England (Streissguth, 1997). His research indicated that the pregnancies of these women resulted in stillbirths and infant deaths two and one half times more often than the sober female inmates. Although other researchers published work describing children prenatally exposed to alcohol (Fretz, 1931; Gooddard, 1912; Haggard & Jellinek, 1942; Ladrague, 1901; Pearson & Elderton, 1910; Roquette, 1957), it was not until 1968 that Dr. Paul Lemoine described the constellation of facial morphology that is described today as the face of FAS. Five years later Jones, Smith, Ulleland, and Streissguth (1973) published their seminal paper in Lancet that provided a comprehensive description of the constellation of physical features of FAS: "growth deficiency; and intellectual, motor, and adaptive behavior impairments." Their description closely matched earlier descriptions of children with FAS (Lemoines, Harousseau, Borteyru, & Meuet, 1968). As Streissguth (1997) later discovered, "The clinical confirmation was exhilarating; the 'FAS face' appeared to be unique to alcohol" (p. …


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