The medical and health systems were portrayed as vital to problem resolution on one hand, but criticised as failing to address the problem on the other. This conundrum was most evident in the responses from Australian participants, who expressed the view that having medical professionals engaged in addressing the problem of FASD was essential (BP0323; RS0325; BP0325; RS0331; AP0332). One Australian said community momentum had built over the past couple of years, with improved ability to detect FASD in addition to the more obvious features of FAS (RS0330); for another Australian, there was a question why ‘medical practitioners [are] ignoring it’: their ‘official representative bodies need to ask that’ (RS0325). The ‘medical lobby is too powerful’ (RS0325) commented one, and for another, the criticism ‘of the hegemony of medicine’ was at odds with the necessary involvement of senior obstetricians, midwives and groups like the Australian Medical Association and other mainstream health groups (RS0330). Regardless, as a Canadian suggested, physicians are needed who have the ‘particular characteristics of respect, non-judgment and assertiveness’ and who have ‘knowledge of the brain and assessment domains’ (AP0216).
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Somewhat ironic is the reliance on FASD awareness prevention, diagnosis and treatment because public opinion is driven by doctors (RS0325) when, according to another Australian participant, a survey of Australian health professionals revealed ‘most do not know how to make a diagnosis’. If doctors did know how to diagnose, then they lacked ‘certainty as to how to care for patients including referral for further assessment’, because there is ‘no specific treatment’ (MD0326). On a personal level, one Australian expressed the view that paediatricians ‘don’t know or understand the conditions or features’ (AP0328) and ‘GP’s provide incorrect information’ (BP0325). Many were concerned a diagnosis would ‘stigmatize patients and parents’ (MD0326). Participants claimed some psychiatrists do not know how to diagnose in the United States (MD0102); nor did most physicians know how to diagnose (BP0220) in Canada. For an Australian respondent, diagnosis was believed to be currently ‘stagnating’ (RS0325).Advocacy, according to one Australian participant, had not mobilised and governments were thought to be ‘hamstrung by the medical profession’ and ‘frustrated by a lack of interest’ (RS0325). This means implementation of diagnostic and assessment protocols to ‘motivate diagnosis’ and working in ‘diagnostic teams’ (BP0323) with a commitment from the Australian Medical Association and specialist organisations to educate their memberships ‘to shift the mindset on ADHD, autism etc’ (RS0325). Diagnostic coding for FAS in Australia was required (BP0325), with better training in medical and nursing schools (MD0326).
Participants from the United States suggested that coming to a consensus on defining the spectrum (RS0108; NG0111) and presenting FASD ‘as a cogent medical condition and a neurodevelopmental disorder’ (BS0103) were critical in the future. A new diagnostic criterion that was ‘relevant to adolescent and adult outcomes’ which would ‘almost certainly not involve growth or facial features’ (RS0108) was be needed to ensure diagnostic accuracy, as FASD is recognised as a lifetime condition (RS0114). This means interventions must focus on the issues ‘that plague adolescents and adults’; currently no funding is spent on meeting the needs of those affected in these life stages (RS0108). As a participant from the United States advised, FASD is more than a medical/health issue and the
diagnosis only describes the initial insult (MD0107).
In Australia doctors ‘don’t believe’ FASD is a problem, and their non-acceptance of a condition they know little about is ‘arrogance’ (BP0323). One participant proposed a barrier to be the non-acceptance of training by others outside their own professions, ‘such is the exclusivity’ (RS0325). For others, continued opposition from the medical field was seen as the most difficult to overcome (BP0109), with paediatricians and psychiatrists (BP0323; RS0325) and ‘recalcitrant doctors with vested interests in the alcohol industry’ perceived to be most often in denial (RS0325).
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It is about how the powers that be like the medical model and how the health care system is more powerful than other sectors who might speak for others (RS0217).For one respondent, reactions to addiction and the misunderstanding of physical brain difference as causal to fetal alcohol behaviours in the past covered the spectrum from ‘benign neglect to active persecution indicating shared social ignorance, fear and reactivity’ (ET0112). Understanding of brain dysfunction had evolved over the past five decades and contributed to understanding the
‘neurobiology of addiction’ in respect to parents and the symptomatic neurobehaviour (of the child), which in turn led to different and effective responses (ET0112). In Canada a great deal of research was being done on the brain and there was increasing understanding of brain function (SP0218).
One US participant noted that FASD was not in the Diagnostic Statistical Manual, and as a consequence many individuals remained ‘undiagnosed or misdiagnosed’ and were often ‘labelled ADD/ADHD’ (MD0107). Lack of recognition of the disability caused one Canadian participant to question if some people were disposable (AP0213). The non-inclusion of FASD as a registered disability in Australia was identified as a barrier by two Australian participants (AP0332; AP0328). Currently disability status is ‘dependent on IQ which has very little to do with FASD’ (AP0328). For Canadian participants, the IQ measurement is ‘inadequate and flawed’ (RS0214) and ‘FAS has been called “the orphan group of disability”’ (AP0213). In one Canadian’s opinion, the prevention of fetal alcohol and FASD is ‘tough’, but once the child is born ‘the problem is less medical’ (RS0217). A participant from the United States pointed out that FASD needed recognition ‘under all federal
disability-related benefit programs and in all relevant classification and eligibility systems’ (NG0111). The adoptive population is at high risk (ET0221).
In the opinion of a participant from the United States, FASD was ‘a neurocognitive disability’ and the ‘face’ of FASD led to a failure ‘to understand the global impact of the central nervous system
impairment’ (MD0107). For a compatriot, the challenge was in determining ‘how to move away from the diagnosis of FAS and how to develop applicable criteria for the diagnosis of ARND, ARBD and the neurocognitive manifestations of prenatal alcohol exposure’ (RS0108). This same participant pointed out that the minimisation of the spectrum is due to the current dilemma of being ‘trapped in the grip of dysmorphology which is of little use in the majority of cases of FASD’ because facial features ‘predict nothing in terms of effective treatment or prevention’ for individuals across their lifespan, and at the moment we cannot move beyond ‘the typical manifestations of FASD’ (RS0108). Australians made the point that diagnosis is problematic because the characteristic features are not always observable, there are no biomarkers leading to a minimisation of the complete spectrum (BS0331), and there is poor recognition of the full spectrum of conditions and a focus on FAS only
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(AP0332). The idea of ARND was subject to ‘considerable cynicism’ and there were multipledisorders from which to determine which conditions might be attributable to alcohol (MD0326). According to one Australian participant, few general practitioners were known to ‘adopt brief interventions’ despite a ‘dearth of evidence about effective interventions’ in research settings (RS0330). The outcome, said a Canadian, was a selective diagnosis of autism or ADD/ADHD to ‘avoid the alcohol label’ with the consequence of ‘no intervention and/or support’. This equates with further ‘trauma with bad results’ (BP0220).
It is difficult advocating when doctors deny FASDs. I even question myself … does this really exist or am I imagining it? I question my own intelligence and maybe that is what the medical hierarchy wants us to do. (RS0325)
Ignorance and denial of the problem ‘renders the baby, child or adult with FASD invisible’, stated an Australian (RS0325). A participant from the United States expressed the view that the problem with diagnosis stemmed from a ‘collective unconsciousness’ of physician ‘denial’ (MD0107), while another felt the ‘greatest obstacle’ was a lack of agreement on what ‘the ‘D’s are in FASD’ (HP0106). This participant explained that the ‘D’s are about problems with learning and its associated [sic] with lower levels of drinking. There is no agreement or consensus. Because of this difficulty in diagnosis, numbers of affected individuals cannot be counted and if you can’t count numbers you cannot demonstrate need. FASD is invisible and invalidated’ (HP0106).
Physician ‘disbelief’ that alcohol is causal or that ‘the disorder is problematic’ perpetuates resistance to advising women of the risk of alcohol use during pregnancy, according to participants from the United States (BS0103) and Canada (BP0220). In the United States there is a second consequence in the discretion (open to those women who have the means) ‘to seek alternative conditions’ (NG0111) or for an Australian participant, a bias to ‘meet the child’s needs’ (AP0322). Hence, the response to early detection and diagnosis was identified as a barrier to addressing the issue of fetal alcohol exposure and FASD. As a United States participant explained,
it needs to be constantly stated that the diagnostic criteria do not focus in a meaningful way and are not connected to issues that need intervention or treatment for the individual with an FASD, their family or to the systems of care. This disconnect is a key in the current funding issues, the need for services and what these services should be … Again, the facial features are not much of an issue in effective treatment or prevention of future problems. (RS0108)
A United States participant pointed out that an increasing number of children and adults who live with FASD are better recognised (ET0112). However, in contrast, a compatriot claimed that the number of cases identified is low if less than two per cent of the 1:100 estimated prevalence of FASD is accepted
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in the total population. This situation is proposed to be attributed ‘at least in significant part to the difficulties inherent in the screening and diagnostic process’ and that an increase in the size and cost of a system which ‘is able to diagnose less than 15% of affected people, is too expensive to support for a common condition like FASD’ (RS0108). As one Canadian interviewee wrote in response to the interview questions, world governments ‘still believe that this is a small problem’ (SP0222).Until they understand the depth of the problem they will likely have superficial engagement. They won’t understand the depth until we have diagnostic capacity so it is a bit of circle we go in. (SP0222)
A participant from the United States advised of the failure ‘to demonstrate the seriousness of the problem and raise attention’ (BS0103). As another participant explained, ‘about the same time FAS became an important health issue, the AIDS epidemic overshadowed all other public health issues’ (RS0108). Just as a resurgence of FASD began, the autism epidemic became the focus of much of the available discretionary spending of state or provincial governments; currently it is the inability of the FAS field to move beyond FAS to the more typical manifestation of FASD, including birth defects, mental disorders, substance use and developmental disabilities (RS0108). One US participant pointed out that autism is referred to as ‘the darlings disease’ attracting a $30 million investment in autism compared with $800,000 for FASD (RS0105).
A parent once told service delegates at a conference, ‘You see the snapshot, we see the moving picture’ (AP0213).