An article by a group of developmental pediatricians in Canada published this fall in the pediatric journal The Lancet Child & Adolescent Health raises major concerns about the use of fetal alcohol spectrum disorder (FASD) as a diagnostic term.

The paper “Asking difficult questions about fetal alcohol spectrum disorder in the context of the child, the mother, and the systems in which they live,” argues FASD as a diagnostic term perpetuates a misleading narrative about child development and maternal health, contributes to stigma associated with the diagnosis, and does not account for the current understanding of neurodevelopment and the effects of trauma and adversity.

In response to the authors’ viewpoints, FASD United offers its initial perspective on some of the paper’s specific proposals. We enthusiastically agree with the authors’ call for, “Urgent international collaborative action to review the use of [FASD] as a diagnostic term.” We believe the classification and management of FASD in medical and mental health systems, access to public benefits program, and public health strategies are among the many worthwhile aims for consideration among international FASD stakeholders.   

[Please note that FASD is a diagnostic term in Canada while in the United States the term FASD is used to refer to the continuum of diagnostic conditions (fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorder, neurobehavioral disorder associated with prenatal alcohol exposure) that can occur in an individual prenatally exposed to alcohol. Clarity is needed on whether the author’s viewpoints are specific to the use of “FASD” as a diagnostic term or whether they apply as well to diagnostic terms under the FASD umbrella.]

Expanding eligibility of services to people with FASD is a top priority. 

We wholeheartedly agree with the paper’s recommendation that “Identification of prenatal alcohol exposure should not be a requirement for determining eligibility for assessment or supports.”  Given the difficulties of confirming PAE, individuals with possible PAE should be eligible for screening and diagnosis and able to access supports and services. Unfortunately, the reality is so far from this ideal that in order for this to happen, we first need to ensure that FASD is a named condition that is eligible for services.  Given that many states do not even recognize an FASD diagnosis as a qualifying condition for services, it is asking a lot for these states to make services eligible to people without a formal diagnosis or without confirmed PAE.   

A disability is much more than a medical illness. 

The paper goes on to suggest that the health field “reconsider the practice of diagnosing disabilities as medical illnesses.” We certainly appreciate the point that disabilities are so much more than medical conditions and people living with disabilities cannot be seen merely through the narrow lens of medicine.  That said, such a significant health practice change would constitute a major undertaking, requiring buy-in from nearly every group operating in the health and disability space.  The barriers to this are even higher in the U.S. than in Canada.  At this time, a project of this scale and scope does not appear to be feasible in the near term. 

The paper proposes a major overhaul of FASD diagnosis. 

The authors propose an alternative to FASD diagnosis, which they offer as a solution to various concerns and problems they attribute to using FASD as a diagnostic term.  Instead of diagnosing FASD, they recommend we “move towards a non-categorical approach by use of a broader diagnostic term, such as neurodevelopmental disorder with qualifiers identifying areas of functioning affected.”  The last part, recommending that a diagnosis be accompanied by functional qualifiers, could prove fruitful for discussion and merits further consideration. 

While the authors raise some important challenges related to diagnosing FASD, getting an accurate FASD diagnosis is tremendously valuable to families.  It is important to diagnose FASD early because the research is clear that early intervention improves outcomes, and we know that people with FASD thrive and succeed when they get FASD-informed services.   

Replacing “FASD” with a broad diagnostic term risks marginalizing the FASD community.

While it makes sense to review and update terms as needed, we are concerned that replacing FASD with a diagnostic term that makes no mention of PAE (prenatal alcohol exposure) would serve to further marginalize the FASD community and reduce the public’s understanding of the risks of PAE.  The authors write, “If the diagnosis of fetal alcohol spectrum disorder is removed completely and not replaced, any or all supports and resources for individuals affected by prenatal alcohol exposure could be put at risk.”  Our concern is that by replacing FASD with such a broad diagnostic term, the practical impact would be to eliminate the recognition of FASD and PAE, leading to these very risks the authors identify.   

There does not appear to be a need to broaden diagnostic terms given that the term FASD itself encompasses a wide spectrum of disabilities and differences, with each individual affected in different and unique ways.  FASD as an umbrella term preserves the importance of the various individual diagnoses under the umbrella.  The FASD spectrum is broad enough to include a diversity of experiences, while still shining a much-needed light of visibility on the role of PAE.   

In practice, an effort to dramatically change FASD diagnostic terms would run into numerous barriers, given the number of different agencies, organizations, and advocates that would be required to work together to implement such a change. 

For context, it took many years and substantial effort by many stakeholders to successfully add the FASD-related condition ND-PAE (Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure) to the DSM-5 (The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), which is the principal authority for psychiatric diagnoses in the U.S.  FASD United was directly involved in each stage of this long and complex process.  Given our experience with how difficult it was to include a new term (that was not yet in clinical use) in a new edition of the DSM, it seems unrealistic to expect to change a term like FASD, which is currently being used by countless professionals and families, and which would need to be implemented throughout the healthcare system to be effective. 

The term FASD is being used right now in important work. 

We must also respect the perspectives of the many families and self-advocates who have embraced the term FASD and consider it part of their identity.  While FASD remains highly stigmatized, FASD United and advocates are working hard to reframe FASD through a strengths-based lens.  The term FASD is being used right now in advocacy work and public health initiatives, including The FASD Respect Act in the U.S. Congress.  We are concerned that an effort to move away from the term FASD risks damaging the effectiveness and visibility of this critically important work. 

Chris Melfi is the Policy Coordinator at FASD United and just organized our “Hill Day” of advocacy in Washington, DC.  Chris says, “The FASD Respect Act will ensure we have an evidence-based definition of FASD, giving professionals and families the best practices and tools to diagnose and support people with FASD. Inherent in FASD-informed practices and tools is the need to be culturally and socioeconomically aware of how to best support individuals and families.” 

Recognizing FASD and PAE does not mean ignoring other factors. 

The paper makes the point that genetics play a role when it comes to disabilities, and that looking only at PAE misses other factors.  When addressing PAE, it is important to broaden one’s scope beyond PAE and recognize other factors that co-occur in people with FASD.  While it is important to look holistically at all of the factors influencing a person’s health and wellness, this does not diminish the importance of acknowledging PAE and its effects. 

Genetic screening can be a valuable part of an FASD diagnostic process. 

The authors suggest that “explicit and routine… genetic investigations” should be a part of the standard recommendation in FASD diagnostic guidelines.  There has been and continues to be a great deal of research looking into the role of genetics and FASD.  Many FASD diagnostic clinics do provide referrals to genetic screening, and this is certainly an area for additional collaboration, especially as genetic screening becomes more accessible.  A possible barrier to this is the difficulty in adding another element to the FASD diagnosis process, which can already be a very time and resource-intensive process, often involving a multidisciplinary team at a specialized facility. 

We can support people living with FASD and PAE while also supporting people with other disabilities. 

The authors assert that their goal is “to improve the practice of supporting individuals with neurodevelopmental differences.”  We appreciate and support this goal, and we can move toward it by increasing awareness of the unique challenges experienced by people with FASD  and PAE, while also examining and challenging its complexity, nuance, stigma, and overlap with other disabilities. 

We very much appreciate the paper’s recommendation to continue to address PAE in healthcare settings and to support families impacted.  We thank the authors for their consideration of important issues related to FASD and we look forward to developing opportunities for further dialogue, conversation, and collaboration.