Recently, a viewpoint article titled “Asking difficult questions about fetal alcohol spectrum disorder in the context of the child, the mother, and the systems in which they live” was published in the Lancet. It questioned the appropriateness of using the diagnostic term: Fetal Alcohol Spectrum Disorder (FASD).
NOFASD was one of the many organisations around the world troubled by the arguments put forward in this article – and the potential damage that could be caused to prevention efforts, and understanding and awareness of this condition, should the diagnostic term FASD not continue to be used consistently world-wide, as it currently is.
As the National Voice for FASD in Australia for 25 years and through our daily engagement with those with lived and living experience of this condition, NOFASD is in an informed position to comment. While there is still much work to be done, we have been heartened in recent years to see a heightened awareness of FASD. In Australia, the ground-breaking national campaign, Every Moment Matters, which commenced in November 2021, has seen an increase in recognition of the risks of alcohol consumption in pregnancy and the fact that prenatal alcohol exposure (PAE) can result in FASD. Within the NDIS, FASD is funded under List B (Conditions that are likely to result in a permanent impairment) and List D (Permanent impairment/Early intervention, under 7 years. No further assessment required). In addition in 2023, FASD was recognised as a disability within the Medicare Benefits Schedule. To see such progress in awareness and support undermined by changing the diagnostic term for this condition would be a retrograde step.
In Canada the nation-wide Canada FASD Research Network, CanFASD, responded in a detailed article highlighting seven key reasons why they disagreed with the viewpoint article in the Lancet and why they believe it is critical that the diagnostic term FASD continues to be used. NOFASD fully endorses the CanFASD statement and we have listed below the seven key reasons provided in their statement together with a short extract about each, quoted directly from the CanFASD document.
1. Clear and Actionable Diagnosis
FASD assessment and diagnosis offers a specific, identifiable framework for identifying and supporting individuals affected by prenatal alcohol exposure (PAE).
2. Evidence of Alcohol as a Teratogen
Alcohol’s teratogenic effects are well-documented and uniquely damaging to fetal development.
3. Reducing Stigma through Education, Not Terminology
Although it is true – and problematic – that FASD is a highly stigmatized disability, this issue lies not in the diagnosis itself, but in harmful stereotypes perpetuated at the societal level …rather than eliminating FASD as a diagnostic term, efforts should focus on better education and reduced judgment among service providers and the public
4. Improving Health Equity
FASD is caused by PAE, not by race. Confusing these things continues to perpetuate harmful myths. Some people are at higher risk of alcohol consumption during pregnancy – not because of their race, but because of their living circumstances, their mental health status, their support systems, and their social determinants of health.
5. Diagnosis as a Gateway to Services
One of the strongest arguments for retaining FASD as a diagnosis is that it facilitates access to essential services, including educational and health care supports.
6. The Need for Further Research, Not Diagnostic Elimination
Rather than eliminating the diagnosis altogether, the solution is to refine and expand the research surrounding FASD, including comorbidities, the role of genetic and environmental factors, and the perspectives of those with living experience.
7. The Critical Importance of Prevention Work
Removing the term FASD eliminates space for conversations about prevention … camouflages stigma, and limits opportunities to work with women, providers, and systems to change how they view and act on the complexity of alcohol use in pregnancy.
Read the CanFASD Statement in full
In the USA, the national organisation, FASD United, responded to the Lancet article within days of its publication, with the article: Addressing the Recommended Changes to FASD Diagnosis Published in The Lancet
Well-known Australian FASD Consultant Prue Walker has also written a detailed response to this issue, titled Why we can’t move on from FASD diagnosis.
In her article she writes:
Would it be better to shield parents, especially birth mothers, from the knowledge that alcohol has impacted their child’s development? While it’s undeniably painful, withholding this information deprives families of an essential understanding of their child’s needs. And without this knowledge, we miss the opportunity to prevent future alcohol-exposed pregnancies.
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If you wish to read the viewpoint article that has provoked such concern and discussion around the world from those of us committed to raising awareness of FASD, including both prevention efforts and support for those impacted by this life-long condition, see: Asking difficult questions about fetal alcohol spectrum disorder in the context of the child, the mother, and the systems in which they live