This 3-year qualitative study investigated the diagnostic process and the experiences of professionals and families associated with 5 Alaskan students with Fetal Alcohol Spectrum Disorder (FASD). The data revealed (a) an increase in public awareness, but limited provision of services for children with FASD and their families; (b) the use of differentiated instruction by experienced teachers, but beginning teachers who experienced frustration and were less likely to adapt instruction; and (c) the pervasive impact of challenging behaviors, but the limited support provided to families. The results offer insights into FASD and suggest implications for coordinated educational services and family supports.
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References
1.
AbkarianG. (1992). Communication effects of prenatal alcohol exposure. Journal of Communication Disorders, 25, 221–240.
2.
AronsonM. (1984). Children of alcoholic mothers. Unpublished doctoral dissertation, University of Goteborg, Departments of Pediatrics and Psychology, Sweden.
3.
ArtilesA.TrentS.PalmerJ. (2004). Culturally diverse students in special education: Legacies and prospects. In BanksJ. A.BanksC. M. (Eds.), Handbook of research on multicultural education (2nd ed., pp. 716–735). San Francisco, CA: Jossey-Bass.
4.
AstleyS.ClarrenS. (2000). Diagnosing the full spectrum of fetal alcohol-exposed individuals: Introducing the 4-digit diagnostic code. Alcohol & Alcoholism, 35, 400–410.
5.
AstleyS. J.ClarrenS. K. (1997). Diagnostic guide for FAS and related conditions. Seattle: University of Washington.
6.
BogdanR.BiklenS. K. (1998). Qualitative research in education: An introduction to theory and methods (3rd ed.). Boston: Allyn & Bacon.
7.
BrickerD.Pretti-FrontczakK.McComasN.). (1998). An activity-based approach to early intervention (2nd ed.). Baltimore: Paul H. Brookes.
8.
BronfenbrennerU. (1979). The ecology of human development: Experiments by nature and design. Cambridge, MA: Harvard University Press.
9.
BurgessD.StreissguthA. P. (1990). Educating students with fetal alcohol syndrome or fetal alcohol effects. Pennsylvania Reporter, 22, 2–4.
10.
Centers for Disease Control. (2002). Fetal alcohol syndrome: Alaska, Arizona, Colorado, and New York, 1995–1997. Morbidity and Mortality Weekly Review, 51: 433–435.
11.
ClarrenS. K.AstleyS. (1997). The development of the FAS diagnostic and prevention network in Washington State. In StreissguthA.KanterJ. (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 38–49). Seattle: University of Washington Press.
12.
ClarrenS. K.SmithD. W. (1978). The fetal alcohol syndrome. New England Journal of Medicine, 298, 1063–1067.
13.
CogginsT.FrietT.MorganT. (1998). Analyzing narrative productions in older school-age children and adolescents with fetal alcohol syndrome: An experimental tool for clinical applications. Clinical Linguistics & Phonetics, 12, 221–236.
14.
CondermanG.StephensJ. (2000). Voices from the field: Reflections from beginning special educators. TEACHING Exceptional Children, 33 (1), 16–21.
15.
ConnorP. D.StreissguthA. P. (1996). Effects of prenatal exposure to alcohol across the life span. Alcohol Health and Research World, 20, 170–174.
16.
CorderoJ. F.FloydR. L.MartinM. L.DavisM.HymbaughK. (1994). Tracking the prevalence of FAS. Alcohol Health and Research World, 18, 82–85.
17.
DareshJ. (2003). Teachers mentoring teachers: A practical approach to helping new and experienced staff. Thousand Oaks, CA: Corwin Press.
18.
DehaeneP. (1995). La grossesse et l'alcool [Alcohol and pregnancy]. Que Sais-Je?, 2934. Paris: Presses Universitaires de France.
19.
DehaeneP.Samaille-VilletteC.Boulanger-FasquelleP.SubtilD.DelahousseG.CrepinG. (1991). Diagnostic et prevalence du syndrome d'alcoolisme foetal en maternit? [Diagnosis and prevalence of fetal alcohol syndrome]. Presse Medicale, 20, 1002.
20.
DenzinN. K.LincolnY. S. (2000). Handbook of qualitative research (2nd ed.). Thousand Oaks, CA: Sage.
21.
DufourM. C.WilliamsG. D.CampbellK.AitkenS. (1994). Knowledge of FAS and risks of heavy drinking during pregnancy, 1985 and 1990. Alcohol Health and Research World, 18, 86–92.
22.
DunnL. (1968). Special education for the mildly retarded—is much of it justifiable?Exceptional Children, 35, 5–22.
23.
DunstC.PagetK. (1991). Parent-professional partnerships and family empowerment. In FineM. (Ed.), Collaboration with parents of exceptional children (pp. 25–44). Brandon, VT: Clinical Psychology.
24.
FordA.DavernL.SchnorrR. (2001). Learners with significant disabilities: Curricular relevance in an era of standards-based reform. Remedial and Special Education, 22, 214–222.
25.
FoxL.VaughnB.WyatteM. L.DunlapG. (2002). “We can't expect other people to understand”: Family perspectives on problem behavior. Exceptional Children, 68, 437–450.
26.
GoldenJ. (2005). Message in a bottle: The making of fetal alcohol syndrome. Cambridge, MA: Harvard University Press.
27.
GormanA. (1995). Factors associated with disrupted school experiences in subjects with fetal alcohol syndrome: Overcoming secondary disabilities. Seattle: University of Washington.
28.
HalmesmakiE. (1988). Alcohol counseling of 85 pregnant problem drinkers: Effect on drinking and fetal outcome. British Journal of Obstetrics and Gynaecology, 95, 243–247.
29.
HughesC.MorseC. (2002). Women at Risk Program Evaluation Report. In MoranP. (Ed.), Year One evaluation and progress report: State of Alaska Multi-Systemic Fetal Alcohol Project. Anchorage, AK: Center for Human Development, University of Alaska.
30.
Institute of Medicine. (1996). Fetal alcohol syndrome: Diagnosis, epidemiology, prevention, and treatment. Washington, DC: National Academy Press.
31.
JohnsonM.BremC. (2004). State of Alaska FAS Project: Evaluation of FASD diagnostic teams. Anchorage, AK: University of Alaska.
32.
JonesK. L. (1988). Smith's recognizable patterns of human malformations. (4th ed.). Philadelphia: W. B. Saunders.
33.
JonesK. L.SmithD. W. (1973). Recognition of the fetal alcohol syndrome in early infancy. Lancet, 2 (836), 999–1001.
34.
KasaharaM.TurnbullA. (2005). Meaning of family-professional partnerships: Japanese mothers' perspectives. Exceptional Children, 71, 249–265.
35.
KatsiyannisA.YellM.BradleyR. (2001). Reflections on the 25th anniversary of the Individuals with Disabilities Education Act. Remedial and Special Education, 22, 324–334.
36.
KeoghB. K.GarnierH. E.BernheimerL. P.GallimoreR. (2000). Models of child-family interactions for children with developmental delays: Child-driven or transactional?American Journal on Mental Retardation, 05, 32–46.
37.
KleinfeldJ.WescottS. (1993). Fantastic Antone succeeds: Experiences in educating children with fetal alcohol syndrome. Fairbanks, AK: University of Alaska Press.
38.
KnotekS. (2003). Bias in problem solving and the social process of student study team: A qualitative investigation of two SSTs. The Journal of Special Education, 37, 2–14.
39.
LemoineP.HarousseauH.BorteyrunJ. P.MenuetJ. C. (1968). Les enfants de parents alcooliques: Anomalies observes, à propos de 127 cas [Children of alcoholic parents: Abnormalities observed in 127 cases]. Ouest Medical, 21, 476–482. Selected Translations of International Alcoholism Research (STIAR). Rockville, MD: National Institute on Alcohol Abuse and Alcoholism.
40.
LemoineP.LemoineP. (1992). Avenir des enfants de mères alcooliques (étude de 105 cas retrouvés à l'âge adulte) et quelques constatations d'interêt prophylactique [Future of the children of alcoholic mothers (study of 105 cases rediscovered to the adult age) and some interesting prophylactic notings.]Annales de Pédiatrie (Paris), 39, 226–235.
41.
LincolnY. S.GubaE. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
42.
LincolnY. S.GubaE. G. (2000). Paradigmatic controversies, contradictions, and emerging confluences. In DenzinA. K.LincolnY. S. (Eds.), Handbook of Qualitative Research (2nd ed., pp. 163–188). Thousand Oaks, CA: Sage.
43.
LucyshynJ.DunlapG.AlbinR. W. (Eds.). (2002). Families and positive behavior support: Addressing the challenge of problem behaviors in family contexts. Baltimore: Paul H. Brookes.
44.
MayP. A.HymbaughK. J.AaseJ. M.SametJ. M. (1983). Epidemiology of fetal alcohol syndrome among American Indians of the Southwest. Social Biology, 30, 374–387.
45.
MaxwellJ. A. (1996). Qualitative research design: An interactive approach. Thousand Oaks, CA: Sage.
46.
MilesM. B.HubermanA. M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Newbury Park, CA: Sage.
47.
National Institute on Alcohol Abuse and Alcoholism (NIAAA). (1987). Sixth special report to the U.S. Congress on alcohol and health. Washington, DC: U.S. Department of Health and Human Services.
48.
National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press.
49.
PadillaR. V. (1999). HyperQual3 [Computer software]. Chandler, AZ: Author.
50.
RyanS.DybdahlC. (2004). Languishing in limbo: A case study of students with FASD in rural and remote Alaska. Anchorage, AK: Center on Human Development, University of Alaska.
51.
RyanS.FergusonD. (2006). The person behind the face of fetal alcohol spectrum disorder: Student experiences, and family and professionals' perspectives on FASD. Rural Special Education Quarterly, 25 (2).
52.
SalendS. (2005). Creating inclusive classrooms: Effective and reflective practices for all students. Upper Saddle River, NJ: Merrill Prentice Hall.
53.
State of Alaska, Department of Health and Human Services, Office of FAS. (2003). Data Reporting Forms.
54.
StreissguthA. (1997). Fetal alcohol syndrome: A guide for families and communities. Baltimore, MD: Paul H. Brookes.
55.
StreissguthA.AaseJ.ClarrenS.RandelsS.LaDueR.SmithD. (1991). Fetal alcohol syndrome in adolescents and adults. Journal of American Medical Association, 265, 1961–7.
56.
StreissguthA.BarrH. M.KoganJ.BooksteinF. L. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE): Final report to the Centers for Disease Control and Prevention on Grant No. R04/CCR008515 (Tech. Report No. 96–06). Seattle: University of Washington, Fetal Alcohol and Drug Unit.
57.
StreissguthA.BooksteinF.BarrH.SampsonP.O'MalleyK.YoungJ. (2004). Risk factors for adverse life outcomes in Fetal Alcohol Syndrome and Fetal Alcohol Effects. Developmental and Behavioral Pediatrics, 25 (4), 228–238.
58.
StreissguthA.ClarrenS. K.JonesK. L. (1985). Natural history of the fetal alcohol syndrome: A ten-year follow-up of eleven patients. Lancet, 2, 85–91.
59.
StreissguthA.KanterJ. (Eds.). (1997). The challenges of fetal alcohol syndrome: Overcoming secondary disabilities. Seattle: University of Washington Press.
60.
Substance Abuse and Mental Health Services Administration. (2005). The language of fetal alcohol spectrum disorders. Retrieved May 3, 2005 from http://fascenter.samhsa.gov.
61.
TimlerG. R.OlswangL. B. (2001). Variable structure/variable performance: Parent and teacher perspectives on a school-age child with FAS. Journal of Positive Behavioral Interventions, 3 (1), 48–56.
62.
TurnbullA. P.RuefM. (1996). Family perspectives on inclusive lifestyle issues for people with problem behavior. Exceptional Children, 63, 211–227.
63.
TurnbullA.TurnbullR. (2001). Families, professionals, and exceptionality: Collaborating for empowerment (4th ed.). Upper Saddle River, NJ: Merrill/Prentice Hall.
64.
WolcottH. F. (1994). Transforming qualitative data. Twin Oaks, CA: Sage.
