3. Cuantificación por peso y perfil ambiental
3.2 Análisis perfil ambiental
In 1996 a publication from the National Institute on Alcohol Abuse and Alcoholism (Warren & Foudin, 2011) noted several important shifts in conceptualising FASD between 1995 and 2000. The
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first was the use of the term ‘fetal alcohol’ by Riley et al. (1995), which changed the language from blaming maternal alcohol use or alcoholism to a less stigmatising term. The second was a proposed revision by the Institute of Medicine of the FASD diagnostic criteria. Stratton and colleagues had proposed FAS as ‘a classic example of a family problem’ and claimed FAS to be about a mother ‘who abuses alcohol’ and then has ‘additional affected pregnancies’ and an inability to care for her children (Stratton et al. 1996, p. vi). Estimates of lower levels of alcohol use in pregnancy as causal to fetal harm were claimed to be ‘premature’ (p. 27).Within the IOM guidelines, diagnostic categories were proposed as cited in Roberts and Nanson (2000, p. 50): Fetal Alcohol Syndrome (FAS); FAS without maternal exposure confirmed but with evidence of facial dysmorphology, growth impairment and central nervous system dysfunction; partial FAS (pFAS), whose diagnosis required a confirmed history of prenatal alcohol exposure, facial dysmorphology, and either growth retardation or central nervous system abnormalities; Alcohol- related Birth Defects (ARBD), denoting the presence of congenital anomalies; and Alcohol-related Neuro-developmental Disorder (ARND), requiring a confirmed history of prenatal alcohol exposure and evidence of central nervous system abnormalities.
The importance of the inclusion of a category which eliminates the need for evidence of maternal alcohol use during pregnancy cannot be underestimated. The increasing number of children in care, of overseas adoptions and fostered adults, at a time when this category was unavailable, meant that maternal alcohol use in the histories of many children was unavailable or inaccessible. The inclusion of the term Alcohol Related Neurodevelopmental Disorders was coined by O’Malley (2000) as a substitute for the term ‘Fetal Alcohol Effects’, which was often mistakenly considered a milder form of FAS (Stratton et al. 1996). This revision was criticised by Astley and Clarren (2000) and cited in Roberts and Nanson (2000, p. 50) on the grounds that it implied alcohol was the ‘sole cause of fetal anomalies’.
The Center for Disease Control requested research be undertaken to build prevention knowledge, to ameliorate secondary disabilities for people living with FAS (Streissguth & Kanter 1997, p. ii). The research foci were the occurrence and range of secondary disabilities, risk and protective factors, and the development of a Fetal Alcohol Behavior Scale (FABS). Ten major areas of concern were identified; the findings revealed that 90 per cent experienced mental health problems, alcohol and other drug use; approximately 50 per cent over the age of 12 had experienced confinement or incarceration for mental health reasons or for alcohol and other drug dependence; 60 per cent had a disrupted school history through suspension, expulsion or ‘dropping out’; 60 per cent over the age of 12 had experienced trouble with the law; and about 50 per cent over the age of 12 had been reported for inappropriate sexual behaviour. For those over the age of 21, 80 per cent were reliant on dependent living and affected by problems with employment. Protective factors emerged as impacting singularly
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or in tandem to ameliorate the onset of the secondary disabilities (Streissguth et al. 1997, p. 35) and included diagnosis before the age of 6 years and a stable home environment.The success of fetal alcohol syndrome prevention activities in Washington State highlighted the establishment of the Washington State Fetal Alcohol Syndrome Diagnostic and Prevention Network (FAS-DPN) clinics, the development of the Fetal Alcohol Syndrome Facial Photographic Analysis Software, the FASD 4-digit Diagnostic Code, the Foster Care FAS Screening Program and ‘the collection of Pregnancy Risk Assessment Management System data on maternal use of alcohol’ (Astley 2004, p. 344–351). By 2001 the Fetal Alcohol Syndrome Diagnostic Prevention Network (FAS DPN) based at the University of Washington had completed work on the FAS 4-Digit
Diagnostic Code, described as ‘a comprehensive, objective, case-defined diagnostic method designed for use by an interdisciplinary diagnostic team’. The 4-Digit Code is used by the Washington State FAS Diagnostic and Prevention Network of clinics and offers a comprehensive and ‘user friendly’ manual of information on all aspects of FAS – diagnostics and assessment, prevention and
intervention. Astley (2004) described a multi-disciplinary clinic in Washington DC as focusing on the need to provide families with information in four broad areas: medical, psychiatric/psychological, educational, and social. The clinic provided diagnosis for all ages, with the majority of patients aged between 5 and 15 years.
Astley et al. (1999) argue that the 4-digit diagnostic code based on measurements of growth,
dysmorphology, central nervous system dysfunction, and alcohol exposure is capable of 256 outcomes with ‘corresponding clinical data [that] better characterize the full spectrum of disabilities’. There is acknowledgement that diagnosis is not ‘straightforward as the individual ages’, and diagnosing adults is ‘particularly challenging’ (Stratton et al. 1996; in Roberts & Nanson 2000, pp. 50–51). Accuracy of diagnosis is further complicated when children at risk of fetal alcohol exposure are traumatised by post-birth abuse and neglect and present with behaviours related to these post-birth experiences. A point is made about the difficulty of distinguishing behaviour as resulting from fetal alcohol exposure, from ‘the child’s living environment … or some combination of the two’ (p. 53).