Linking diagnosis and prevention: building the next generation of policy responses
For many of those associated with Fetal Alcohol Spectrum Disorder (FASD) diagnosis, intervention, and prevention, there remains a mysterious aspect to the condition. When FASD was first identified in the 1970’s as the leading known cause of developmental delay, and the only disability of its type that might be called “100% preventable”, it was thought that the link between diagnostic and prevention work would be clear, uncomplicated, and achievable.
FASD, and the range of physical, cognitive, and daily living challenges linked to prenatal alcohol exposure could be prevented completely if women planning pregnancies quit drinking. Likewise, once the range of impairments and functional difficulties of people diagnosed with FASD were codified and elaborated, a road map for providing supports to individuals and families would also be achievable.
Although many promising practices have been developed and implemented, efforts to achieve and sustain prevention of FASD at a population level have been, and remain, elusive (Clarren and Salmon 2010). One reason that so much basic work still needs to be done seems to be related to a failure of FASD to be incorporated into the general cloth of medical work or easily addressed and accommodated in systems like education, social services, mental health, justice, and so on. We need to evaluate what we are doing, how it might be done better, and then to implement and disseminate change (Salmon and Clarren 2010).
The Canada Northwest FASD Research Network is committed to demystifying FASD diagnosis, intervention, and prevention through evidence-based research that promotes integrated approaches which link: compassionate and timely care for pregnant women and mothers with substance use problems; accurate and meaningful FASD diagnosis; and supportive care for people living with this disability. Any approaches need to be documented as they are implemented, so that the lessons learned from their efforts provide the evidence needed to drive the next stages of policy development.
A key to intervention and prevention
Accurate diagnosis of FASD is critical key for prevention and intervention. Proper diagnosis— which requires specialist multidisciplinary teams of professionals—requires capacity which is at present significantly lacking. Using data from the United States as a guide, conservative estimates suggest that the prevalence of FASD is approximately one in 100 people, and the prevalence of individuals with FAS is one in 1000. Using this estimate, the potential number of Canadians living with FAS is about 32,000, and the number of people with is FASD about 340,000.
At present, the number of evaluations that can be done annually in all of Canada is less than 2000. Such a discrepancy between the numbers of those who might require diagnosis and those who can actually get one is beyond comprehension. In addition to the benefits of having a proper diagnosis, population level diagnostic information is also needed to demonstrate to governments that there is a need for services. If efforts are not made to systematically collect information demonstrating the scope of need for support services, effective and responsive systems cannot be constructed. Systems will not be built for hypothetical clients.
No diagnosis—no problem. No problem —no need for a solution. Because FASD has been constructed as a consequence of maternal behaviour and often viewed as hedonistic, reckless or self indulgent, a diagnosis of this disability often generates a different response than other developmental disabilities that result by random chance or an undetected genetic variation. It has been (and in many instances remains) the case that the perspectives of birth mothers have been rendered invisible in diagnostic and support services for children with FASD. This has created conditions in which shame and mother-blaming have flourished, hindering opportunities for prevention within a broad range of systems. If done well, efforts to link policies and programs to enhance social supports and determinants of health, may also help to dismantle the shame and blame that underscore most contemporary prevention efforts.