...the research and policy efforts regarding Fetal Alcohol Syndrome (FAS) have focused on the issues of incidence, prevalence, prevention, and diagnosis (Astley & Clarren, 1997, 2000; Clarren & Astley, 1997; Clarren & Smith; 1978; Cordero, Floyd, Martin, Davis, & Hymbaugh, 1994; Dehaene, 1995; Dehaene et al., 1991; Jones, 1988; Jones & Smith, 1973; Lemoine & Lemoine, 1992; May, Hymbaugh, Aase, & Samet, 1983; National Institute on Alcohol Abuse and Alcoholism, 1987); investigations into attitudes toward alcohol consumption in pregnant women (Halmesmaki, 1988; Streissguth, 1997); perceptions by medical personnel of the impact of maternal consumption on the developing fetus (Dufour, Williams, Campbell, & Aitken, 1994); and the effects of alcohol on the brain of the fetus (Aronson, 1984).

Astley and Clarren (2000) established a clinical diagnostic code for FAS, identifying four primary criteria: (1) growth deficiencies that stunt prenatal and/or postnatal growth; (2) permanent brain damage resulting in neurological abnormalities, delay in development, intellectual impairment, and learning/behavior disabilities; (3) abnormal facial features, including short eye opening, thin upper lip, and reduced or absent philtrum; and (4) maternal alcohol use during pregnancy (Astley & Clarren, 2000).

Fetal Alcohol Syndrome is a clinical diagnosis; Fetal Alcohol Spectrum Disorder (FASD) is not (Astley & Clarren, 2000). FASD describes the range of birth defects (e.g., alcohol-related neurological disorders, prenatal exposure to alcohol, FAS, static encephalopathy, and sentinel physical findings/alcohol exposure) resulting from prenatal alcohol exposure; FAS describes one of the disorders within the spectrum. In this study, FASD is used to refer to the spectrum of disorders, and FAS refers to (a) the official name of the Alaska project or activities conducted within the project, (b) research studies reporting specific findings on children with FAS, or (c) the specific disorder of FAS.

Children with FASD are described as having (a) facial deformities and severe neurobehavioral impairments, (b) impaired cognitive functioning, (c) problems following directions and understanding the consequences of their actions, (d) poor memory and judgment skills, (e) difficulties respecting social boundaries and rules, (f) delays in communication, (g) variable performance in school, and (h) challenging behaviors (Abkarian, 1992; Burgess & Streissguth, 1990; Coggins, Friet, & Morgan, 1998; Kleinfeld & Wescott, 1993; National Research Council, 2001; Ryan & Ferguson, 2006; Streissguth, 1997; Streissguth, Barr, Kogan, & Bookstein, 1996; Streissguth, Clarren, & Jones, 1985; Streissguth & Kanter, 1997; Timler & Olswang, 2001). The consequences of prenatal exposure to alcohol appear to persist throughout life (Connor & Streissguth, 1996; Institute of Medicine, 1996) and to require lifelong supports.

Despite the attention given to diagnosing FAS, and describing the children's characteristics, there has been almost no systematic research on the educational needs of students with FASD or on best educational strategies (Kleinfeld & Wescott, 1993; Streissguth et al., 1991). In one notable investigation, Streissguth et al. (1996) conducted life history interviews with parents and caregivers of 415 people with FAS to identify secondary disabilities. The data indicated that 61% of those 12 years and older and 14% of those ages 6-11 had disruptive school experiences, defined as being suspended or expelled from school, or dropping out. Streissguth and colleagues (2004) identified risk and protective factors for individuals with FASD noting that receiving a diagnosis early and living in a stable home environment increased the odds of escaping negative outcomes such as school expulsions and prison.

Gorman (1995) interviewed 20 individuals with FAS between the ages of 15 and 20, to learn more about their perceptions of school. Participants reported having disruptive school experiences; 9 had been suspended, 6 had dropped out, and 1 had been expelled. The 4 individuals who did not report disruptive school experiences expressed the feeling that "someone at school had really cared about them" (Streissguth, 1997, p. 209).

These studies provided an initial framework for research efforts focused on understanding the experience of FASD from the individual's perspective.

The current qualitative research study examined the process of diagnosis and educational and community support for 5 students with FASD. It builds upon the work of Streissguth et al. (1996), Streissguth et al. (2004), and Gorman (1995) to provide a deeper understanding of the experiences of students with FASD, their families, and professionals.

METHOD

PARTICIPANTS AND SETTING

Background. The Centers for Disease Control (CDC) funded a 4-year project for the Alaska Department of Health and Social Services, Alaska Office of FAS (AOFAS), to develop, implement, and evaluate FAS diagnostic clinics in 14 rural and urban settings across Alaska. Local diagnostic teams were responsible for receiving referrals, conducting FAS diagnostic clinics, producing diagnostic reports, and conducting limited support services for families.

CDC required AOFAS to obtain an outside evaluation of the diagnostic team process. The current study is one of three undertaken; the others were a study of women at risk (Hughes & Morse, 2002) and a study of the diagnostic teams, including their interdisciplinary evaluations (Johnson & Brem, 2004). This article presents findings from the last 3 years of the 4-year project. The data presented in this article represent a subset of a larger data set (Ryan & Ferguson, 2006).

Participants. Participants were identified by the parent navigator of the newly established state FAS diagnostic teams to represent students from preschool, elementary, secondary, and postsecondary settings. The participants were additionally chosen in order to represent a geographic cross section of Alaska.

The 71 individuals interviewed included the 5 focus student participants; their biological, adoptive, and foster parents, and other extended family members; parent navigators (parents whose role it is to advocate and support a family through the diagnostic process); diagnostic team members; child-care workers, special and general educators, principals, and special education directors; superintendents; psychologists, social workers and counselors; police officers; physicians; residential treatment center staff; and behavioral health counselors.

The 5 key participants ranged from 3 to 19 years old (see Table 1). The key participants were of diverse backgrounds, and included 1 Athabascan Alaska Native, 1 Athabascan/African American, 1 Tlingit Alaska Native, 1 Yupik Alaska Native, and 1 Caucasian student. Of the 5 students with FASD, 1 student had been diagnosed with FAS; overall diagnostic classifications included FAS, static encephalopathy, sentinel physical findings, neurobehavioral disorders, and alcohol exposed.

Special education eligibility categories included other health impaired, mental retardation, emotional disturbance, and speech impaired. Four of the 5 students were described as having behavioral and mental health challenges.

Settings. Four of the 5 participants (Paul, Alan, Oscar, Ellie) lived in rural villages or towns with populations ranging from 554 to 7,900; Paul, Oscar, and Ellie lived in Native Alaskan villages (i.e., Athabascan, Yupik, and Tlingit). Adam lived in a city. Four of the 5 participants' communities were below the national poverty level.

DATA COLLECTION

The lead author established rapport with the 5 students, their families, and their teachers in the context of three 2-day site visits a year across the 3 years of the project (total of 90 days). The lead author conducted 85% of the interviews and observations across the 3 years. A trained research assistant conducted the remaining interviews and observations.

Data collection included (a) semistructured interviews; (b) observing students' classrooms, and various meetings between professionals and between professionals and families; (c) analyzing documents ranging from policy statements to student individual education programs (IEPs) and day-to-day student performance data; and (d) informal e-mail or telephone conversations.

The initial interview guide developed in conjunction with AOFAS contained open-ended prompts for questions about (a) the process of diagnosis, education, and community support for students and families; (b) participant perspectives on the provision of services for students with FASD; and (c) the perspective of the families who received these services.

The second or subsequent set of interviews was conducted three times each year. Guides developed for these later interviews included the same topic areas, but also questions concerning changes in the child and family since the previous visit. Participants chose the interview settings, which included living rooms in families' homes, classrooms, administrative or counseling offices, coffeehouses or restaurants, and participants' cars. Interviews lasted from 45 minutes to 2 hours and were audiotaped for later transcription and coding analysis. Participants who were interviewed more than once during the 3 years of the study are indicated with an asterisk in Table 1.

Observations. The study included 400 hours of observation across the 5 sites. Observations initially focused on the 5 students, who were observed in their homes (e.g., eating dinner, working with dog teams, watching TV, playing with siblings), in school or treatment facilities (e.g., in classrooms, hallways, labs, cafeterias, gymnasiums, school yards, special education resource rooms, and child-care classrooms), and during activities (e.g., large-group lessons, small-group lessons, one-on-one instruction, benchmark testing, independent work, transitions between classes). Other variables became part of the observation (e.g., interactions between teachers and students, and interactions between children and their families, activities occurring in the school, differentiated instruction, and curricula modified by the teachers).

During observations in the classroom, we attempted to minimize intrusion into the normal operation of the classroom. In most cases, the observer sat quietly in the back of the room and recorded notes on a laptop computer, with minimal direct interaction with students. At other times, the researcher walked around the classroom and interacted with the focus student as...

NOTE: All illustrations and photos have been removed from this article.



Looking for additional articles?
Search our database of over 3 million articles.

Looking for more in-depth information on this industry?
Search our complete database of Industry & Market reports by text, subject, publication name or publication date.

About Goliath
Whether you're looking for sales prospects, competitive information, company analysis or best practices in managing your organization, Goliath can help you meet your business needs.

Our extensive business information databases empower business professionals with both the breadth and depth of credible, authoritative information they need to support their business goals. Whether it be strategic planning, sales prospecting, company research or defining management best practices - Goliath is your leading source for accurate information.