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What knowledge and whose knowing counts?

Fetal alcohol syndrome examined

Carolyn Schellenberg, RN, BScN, MSc

Reprinted from "Alcohol" issue of Visions Journal, 2006, 2 (9), p. 12-14

W hether we live with a medical diagnosis or make use of diagnoses in our work, a diagnosis is a form of knowledge and a way of knowing, which we take for granted. Medical diagnoses belong to a system for classifying diseases,1 disorders and problems in daily living and for directing attention to causes, modes of treatment and interventions. Diagnostic categories tend to be accepted as authoritative and factual, and, for the most part, they remain unquestioned.

In recent years researchers have been inquiring into the takenfor-granted nature of medical knowledge and the authority granted to the “knowers”—the individuals who produce such knowledge. Anthropologist Bridgette Jordan suggests that: “The power of authoritative knowledge is not that it is correct, but that it counts.”

The medical diagnosis of fetal alcohol syndrome is particularly suited to critical inquiry about what knowledge and whose knowing counts. Fetal alcohol syndrome, commonly called FAS, is a medical diagnosis applied to children who show physical and/or neurodevelopmental characteristics that are associated with—many would say caused by—women drinking alcohol during pregnancy. The FAS diagnosis may also be applied to adults who are believed to have been prenatally exposed to alcohol. However, though applied to the offspring, the diagnosis directly implies that birth mothers are responsible.

In this article, I invite readers to critically question the current view of what causes FAS and how it is that we come to “know” about the birth mothers in this way.

‘Knowers’ change FAS ‘knowledge’ over time

Medical knowledge on FAS has developed over time to shape our common understandings of its “cause.” Fetal alcohol syndrome appeared in medical literature in 1968, when a French doctor published his studies of children born to mothers described as alcoholics.3 In 1973 researchers in the United States named the syndrome “fetal alcohol.”4 There were several factors common to all the women in the US research: all were heavy drinkers, poor and recipients of the US welfare system. Moira Plant insists that FAS has only been found in women whose drinking can be classified as heavy or alcoholic.3 The factors of poverty and of an ‘identifiable’ or heavy drinking problem, which were found in the original descriptions of FAS, were subsequently ignored.3 Nevertheless, hundreds of papers have been written in an effort to determine just how much alcohol consumption puts a fetus at risk and to try and determine what those risks are. There is, however, no conclusive evidence in this regard.

The diagnosis of FAS has also undergone changes over time. While more elaborate systems of diagnosis are now used, doctors continue to rely on four main criteria: 1) facial characteristics, e.g., a thin upper lip and flattened ridge between the nose and upper lip; 2) growth deficiencies such as low birth weight; 3) nervous system involvement, including a range of learning difficulties, and cognitive and behavioural problems; and 4) confirmation of maternal alcohol use during pregnancy.

Rethinking ‘cause

The diagnosis assumes there is a direct causal relationship between maternal alcohol consumption and affected babies. Alcohol is a known teratogen, which means it can be harmful to a fetus. Yet, there remain many unanswered questions about the role of alcohol and other factors that may contribute to fetal harm.5 Even among women who are chronically heavy drinkers, only some women will have an affected child.4,6 Definitions of heavy drinking vary widely, and the practice of identifying a pregnant woman as a “heavy drinker” may also affect the likelihood that her child is identified as FAS.

There is a growing body of research to suggest that there are other factors such as nutrition, maternal health, paternal alcohol use and genetic susceptibility that may, like alcohol, be associated with FAS.3,8,9 Research shows that, while certain changes in the fetus are strongly associated with maternal alcohol consumption, poor folate (i.e., a B-complex vitamin) status is also associated with high alcohol consumption, thereby suggesting that the deficiency of nutrients such as folate may be implicated.10 Birth defects are likely interrelated with multiple components, including nutrients, genes and enzymes.10 Paternal alcohol consumption may also affect the fetus through a direct effect on the father’s sperm or reproductive organs.

There is no single cause of FAS

The single-minded focus on alcohol as the cause of FAS fails to account for other factors that also contribute to neurodevelopmental problems, low birth weight and even FAS-like appearances in children. Standardized psychological tests and facial and growth measurements show variations between cultural groups and create the potential for over- and misdiagnosis.12,13 It is impossible to prove that the abnormalities of mental deficit, growth delay and maladaptive behaviour in any one child are the result of prenatal alcohol exposure, since these abnormalities are not unique to FAS.

Armstrong and Abel argue that, contrary to popular messages that FAS is a threat to all pregnancies, it occurs predominantly among poverty-stricken women. What women in poverty have in common is that they experience or are characterized by factors such as smoking and poor diet.9 These areas of research are raising important considerations for understanding FAS and they depart from the authorized approach to knowing what “causes” it. Since each of these factors (e.g., smoking and poor diet) are risk factors for poor pregnancy outcome, they must all be considered if we are to attend to women’s and children’s health.

The medical diagnosis of fetal alcohol syndrome is presented as fact- based, authoritative evidence that provides a particular way of knowing women and their children. This way of ‘knowing,’ however, obscures the women’s experiences of poverty, violence, abuse and other factors that contribute to poor health and to problem substance use in the first place. It has directed attention to poor and First Nations women and children who are, disproportionately, the subjects of FAS research and the objects of the diagnosis. Focusing attention on a single cause interferes with gaining knowledge that derives from women’s lives and women’s experiences, when such knowledge has the power to help and heal both women and their children.

 
About the Authors

Carolyn has worked as a community nurse and educator and as a policy consultant for families and children with special needs. She is currently a doctoral candidate in the Faculty of Human and Social Development at the University of Victoria

Footnotes
  1. Kihlstrom, J.F. (2002). To honor Kraepelin…: From symptoms to pathology in the diagnosis of mental illness. In L.E. Beutler & M.L. Malik (Eds.), Rethinking the DSM. (pp. 279-303). Washington, DC: American Psychological Association.

  2. Jordan, B. (1997). Authoritative knowledge and its construction. In R.E. Davis-Floyd & C.F. Sargent (Eds.). Childbirth and authoritative knowledge (pp. 55-79). Berkeley: University of California Press.

  3. Plant, M.L. (2000). Drinking during pregnancy. In M. Plant & D. Cameron (Eds.). The alcohol report (pp. 34-38). London: Free Association Books.

  4. Health Canada. (2000). Best practices: Fetal Alcohol Syndrome/Fetal Alcohol Effects and the effects of other substance use during pregnancy. Ottawa, ON: Minister of Public Works and Government Services Branch. Retrieved from www.hc-sc.gc.ca/ahcasc/alt_formats/hecs-sesc/ pdf/pubs/drugs-drogues/best_ practices-meilleures_pratiques/ bestpractices_e.pdf.

  5. Health Canada. (2002). Congenital anomalies in Canada—A perinatal health report, 2002. Ottawa, ON: Minister of Public Works and Government Services Branch. Retrieved from www.phac-aspc. gc.ca/publicat/cac-acc02/pdf/ cac2002_e.pdf.

  6. Armstrong, E.M. (1998). Diagnosing moral disorder: The discovery and evolution of Fetal Alcohol Syndrome. Social Science and Medicine, 47(12), 2025-2042.

  7. Abel, E.L. (1995). An update on incidence of FAS: FAS is not an equal opportunity birth defect. Neurotoxicology and Teratology, 17(4), 437-443.

  8. Plant, M.L. (1985). Women, drinking, and pregnancy. London: Tavistock Publications.

  9. Armstrong, E.M. & Abel, E.L. (2000). Fetal alcohol syndrome: The origins of moral panic. Alcohol and Alcoholism, 35(3), 276-282

  10. Moyers, S. & Bailey, L.B. (2001). Fetal malformations and folate metabolism: Review of recent evidence. Nutrition Reviews, 59(7), 215-224.

  11. Cicero, T.J. (1994). Effects of paternal exposure to alcohol on offspring development. Alcohol Health & Research World, 18(1), 37-42.

  12. Aase, J.M. (1994). Clinical recognition of FAS: Difficulties of detection and diagnosis. Alcohol Health & Research World, 18(1), 5-10.

  13. Aboriginal Healing Foundation. (2003). Fetal alcohol syndrome among Aboriginal people in Canada: Review and analysis of the intergenerational links to residential schools. Ottawa, ON: Author. Retrieved from www.ahf.ca/ assets/pdf/english/fetal_alcohol_ syndrome.pdf.

  14. Day, N.L. (1995). Research on the effects of prenatal alcohol exposure—a new direction [editorial]. American Journal of Public Health, 85(12), 1614-1616.

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