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PROCESOS AUTOREFERENCIALES PROCESOS HETEROREFERENCIALES
FASD is cast as a health condition in all three countries, and all three governments have assigned authority to the medical profession and researchers from the health sciences. Despite this singular approach, diagnosis lacks global consensus and the neurodevelopmental part of the spectrum is considered problematic. By 2001 national health policies in Australia were referencing alcohol use in pregnancy and associated congenital abnormalities, but not FASD: at odds with alcohol and other drug policy frameworks being used in the United States.
The first interdisciplinary clinic was established at the University of Washington in the early 1980s, and many Australians have completed training at the facility. While many clinics offering FASD assessment and supports have been established in the United States and Canada, only two
interdisciplinary clinics exist in Australia. Three medical practitioners participated in interviews for this current investigation, two from the United States and one from Australia. In considering the persons or entities whose support would be vital to future prevention, medical professionals from the United States proposed the alcohol industry, any willing entities, tribal readiness and university based research as essential. Future FASD prevention policy would need to focus on ongoing research in the areas of epigenetics, therapeutics and identifying biomarkers to better diagnose those at risk for an alcohol-exposed pregnancy. High level collaboration by representatives from major institutions inside the United States government recognises prevention efforts benefit from a ‘roundtable approach’ and we need to know ‘what will make a difference’ (MD0107).
Although one health professional claimed it was necessary to acknowledge that messages about risk do not work, other participants noted the provision of accurate information in medical settings and powerful messages about risk as crucial for future prevention. Future medical practice is proposed to include improved screening and referral for women who use alcohol, and preparedness to provide clinical support to an escalating number of individuals and their parents. Heavy reliance on the medical profession as the technical authority, and the need to persuade policymakers and public alike to deliver prevention messages and diagnose and manage FASD cause a dilemma. In reality, the level of understanding of the condition, and diagnostic capability and capacity are limited. Misdiagnosis is
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likely, and it is not expected that this will change in Australia in the near future. Most significantly, the management of individuals living with FASD has become the burden of the parents and families that support them.Participants persistently raised problems with diagnosis as a challenge to addressing FASD in Australia, with the medical profession unable to accept that the problem exists and that they know little about it. Nor does there appear to be any consensus in the United States on how FASD is diagnosed outside of FAS; and this translates into a subjective interpretation of neurocognitive presentations as misdiagnosis. Early scientific evidence at the University of Washington in the 1970s revealed lower intelligence among half of the children exposed to alcohol in utero, and the absence of typical FAE facial features in many cases posed questions about the impact of moderate patterns of maternal drinking. The achievement of ‘normal’ intelligence scores meant disqualification for disability support; and a lack of significant facial features explains why many adolescents went undiagnosed. According to feedback from participants, new diagnostic criteria are needed in the United States to move towards diagnostic consensus, presenting FASD as a cogent medical condition and a neurodevelopmental disorder.
There is confusion in Australia about diagnostic criteria in the absence of biomarkers, and some cynicism among medical and health personnel as to the significance of the FASD problem. For some participants, the medical profession denounces any information provided by parents and this keeps FASD an ‘invisible’ disability. It also makes advocacy for those living with FASD extremely difficult, and limits the capacity to demonstrate prevalence rates. Rather than calling the medical attitude denial, one Australian offered research results to explain that health professionals often do not know how to diagnose or are uncertain as to how the problem should be managed. Treatment options are limited and there is a belief that the FASD label will have stigmatising consequences for the individual and parents.
The reliance on the medical profession and health professionals to deliver clinical services to those living with FASD is a double-edged sword. Alcohol and pregnancy are cast as health issues, yet interviews reveal concern about inconsistencies in messages about risk. There is a continual and escalating demand for specialists able to make a diagnosis but only a small number of paediatricians in private practice and two ‘on site’ interdisciplinary clinics in Sydney and the Gold Coast are available. Without formal training, medical practitioners may avoid making this diagnosis, perhaps lacking confidence in the controversial diagnostic criteria, or the documented inability to create
interdisciplinary models of assessment to deliver accuracy in assessment, or because of discomfort in discussing cause with the parents of those referred for diagnosis. These factors remain a very real concern for the future in all three countries. As Conkin (2005, p. 15) suggests, ‘the social complexity
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of a wicked problem means solutions are a fundamental outcome of a social process’ and ‘a few brilliant people or the latest project management technology is no longer sufficient’.The history of FASD began in the United States with research published fairly rapidly and focused on determining a level of high-risk maternal drinking from which to design interventions, and validating the link between the teratogenic toxicity of alcohol and disruptions to otherwise healthy fetal
development. Maternal alcoholism captured the attention of scientists at the University of Washington as the common denominator, a focus which has dominated diagnosis to this day.
Prevalence data is considered convincing evidence to support policy, inclusive of funding for services, but is dependent on recognition of who is at risk – women using alcohol in pregnancy and individuals who are affected by fetal alcohol. The urgency to quantify the amount of alcohol that might safely be consumed during pregnancy has currency. However, by the mid-1990s recommendations concerning prevention as inseparable from the complex social, physical and economic determinants influencing alcohol use began to emerge in Canadian government reports. The need for public education, warning labels and intersectoral approaches became major themes despite global knowledge of alcohol as teratogenic and understanding of the determinant factors underpinning alcohol use in pregnancy. The prevention of the problem in Australia continues to be limited to FAS, an adverse fetal outcome associated with high-risk alcohol use particularly in the first trimester of pregnancy.
For the Australians interviewed, there are challenges in FASD not being officially recognised as a disability and in the dependence on intelligence as a measurement of FASD although it is not a reliable measure of the complete spectrum of disorders. Services have not incorporated FASD in their practices, and interested workers have had to individually source information and create their own resources; there is also a tendency for individual client work to be reactive rather than proactive. Poor communication across service delivery sectors has led to duplication in information and resources and, in some cases, competitiveness over the optimal way to offer prevention and intervention activities. In Canada, this is reported as an ‘us versus them’ approach when as many solutions as possible are desirable; and in the United States, the lack of collaboration allows none of those involved to account for all facets of the problem.
As FASD was cast as a medical condition from the outset, it is not surprising that the role of the medical profession in FASD evoked a strong reaction from interviews. There is a reliance on medical technical authority to change drinking attitudes and bring about behavioural change; to risk-screen and educate girls and women, to build the evidence base, and to identify, assess, diagnose, treat and manage the growing number of individuals and communities at risk. Unfortunately, the interview data suggest this authority lacks the necessary skills and understanding of women who use alcohol or those living with the FASD condition. Maintaining FASD within the health domain and directing the
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majority of funding to research within this sphere aims to address the prevention of future children born with FASD. The stories from all three countries and the interview data suggest this approach is not working.The authoritative voice of medical and research elites holding influence inside government circles and guiding policy decisions is similar in all three countries. It is linked to the status afforded to those with medical expertise; but frequent comments by interview participants indicated the elites offered
unreliable diagnoses or misdiagnoses, did not know how to diagnose, feared stigmatising parents, or showed a lack of awareness of the full spectrum of fetal alcohol conditions. Diagnoses were described as limited to the insult of alcohol on normal fetal development; yet in attempts to deal with FASD diagnosis is given the heaviest weight. Moreover, for those living with FASD, in spite of a diagnosis or not, the problem across the lifespan can also be identified as a social problem.
The influence of scientific and medical knowledge had been instrumental for Canada in translating the clinical knowledge base, in the establishment of clinical services and designing Canada-specific diagnostic criteria, and in partnering in research. For Australia 20 years of accumulated knowledge has been accessible from the United States and Canada. The teratology of alcohol was known by the medical profession in Australia by at least the late 1970s, but potential medical spokespersons were relatively silent: only four early research papers were published, and 34 children diagnosed; and research on animal models had begun.
Health-based research to determine risk of alcohol use in pregnancy, rates of prevalence, and
government funded programs delivered in the United States since the mid-1990s have been replicated in Canada and are the current focus in Australia. There are at least two consequences of this: first, the principle understanding of teratology that any pregnancy can be vulnerable to the consumption of any amount of alcohol has not been accommodated. Almost fifty per cent of pregnancies are unplanned; and given the rates of alcohol use across all populations, this remains a primary concern. Secondly, high-risk maternal alcohol use in already marginalised communities is attributable to complex phenomena – stress, poverty, limited access to services, personal and cultural shame – and are social constructs, products of social status and not of motherhood, although the personal histories of alcohol use in pregnancy have at times resulted in questioning the legal responsibility of mothers (Australian Medical Association 2014).
Just as public health policy on FASD pays particular attention to First Nation populations in North America, there is evidence in the archival records documented in Chapters 5, 6 and 7 that this pattern has been and is currently replicated in Australia. For example, the National FASD Action Plan (Australian Government 2014) identifies in Point 4 the implementation of targeted measures ‘supporting prevention and management of FASD within Indigenous communities and families in
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areas of social disadvantage’. The following strategy under Point 5: National coordination, research and workforce support (p. 3) follows this same theme:Continue to build the evidence base and improve links between research, policy and practice where appropriate, including promoting the results of the NHMRC targeted call for research on FASD in Indigenous communities.
Financial investment in FAS research ramped up in the United States in the 1980s with government investment through national health research institutions. Prevention pilot projects began in
Washington State, and a follow-up study on affected children estimated to be as high as 25 per cent on reservations, was rolled out in First Nation American communities. Accompanying this was a call for immediate government intervention with First Nation populations. The Canadian story is one of rapid acceptance, at least in policy rhetoric, that FASD prevention is inseparable from the complex social, physical and economic circumstances influencing alcohol use; and that gender matters.
Meanwhile, the reliance on evidence-based research and the focus on easy to access population groups have continued unabated. In all three countries, researchers from health academia and professions have engaged in the quest for knowledge variously, approaching from the perspectives of pure science, clinical based studies, epidemiology, genetics or animal models. In its infancy, FASD research
revealed the impact of fetal alcohol exposure on neuron migration in the developing fetal brain, evidence that teratogenic risk is not restricted to alcohol ‘dependent’ women but is non-discriminating. This finding has not had the expected impact on policy. Knowledge of the impact of secondary
disabilities or conditions is reflected in education and training but has not assimilated into practice. Researchers in all three countries have continued to hold leadership and elite positions on national collaborations of varied stakeholders, as authors of key documents, and as advisors to governments. Researchers work collaboratively to determine all manner of Australian-specific evidence and often replicate studies to deliver evidence that reflects the Australian context. The quest for new knowledge on fetal alcohol exposure-related research in all three countries has been selective and has targeted certain population groups, in particular, Indigenous populations of women considered to be at ‘highest risk’ for an alcohol-exposed pregnancy. At the same time, research has revealed that perhaps half of all women in Australia of childbearing age may be at risk for an alcohol-exposed pregnancy.
If FASD cases are not actively sought, then the majority of them will not be identified, especially those with PFAS and ARND who blend into the general populations because their dysmorphology is not classical, and/or their behaviour is less dramatically affected (May 2011, p. 23).
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Research is necessary to address the effects of alcohol on the unborn, identify best practice treatment services, offer prevention, implement longitudinal studies and identify potential biomarkers indicative of FASD risk. In addition, the effects of cortisol/stress on fetal development when women are living with stress and anxiety are an important new area of knowledge needing to be acquired for the future. However, discretionary targeted research and prevention activities have meant that most individuals living with FASD remain ‘invisible’ although the activities satisfy governments caught between managing the health of the nation and handling the powerful influence of the alcohol industry. The essence of the problem, the cause for concern, is mobilised and perpetuated as certain women in certain communities and the true problem – alcohol – is denied.Researchers from the United States who were interviewed generally agreed that prevention efforts need to target all women at risk, and not just those who are easily accessible, and to focus on clinics where women are going, providing more front line interventions and improved support for providers. The use of more subtle messages to promote women’s consideration of their choices is probably less confronting and creates safer environments for pregnant mothers, encouraging good health before pregnancy as a proactive choice.
In Canada, a personal response approach with less shame and blame is proposed; for Australian researchers who were interviewed, regular intervention prior to pregnancy using brief interventions in obstetrics and antenatal care, coupled with a sustained screening and diagnostic instrument and minimum data sets for reporting and recording alcohol use, are needed. A researcher from the United States concurred with screening all women of childbearing age, and added the need for improved and expanded surveillance in screening both women and ‘screening for FASD’ as important in the future. An Australia researcher believed there needs to be acceptance that we will not prevent all FASD.