A siloed, faux-progressive Lancet opinion piece blind-sides the FASD community

Jan. 4, 2025 Edmonton

Three and a half months later, I’m still trying to take stock of the practical damage inflicted by an ill-considered op-ed published Sept. 16, 2024 by five Canadian physicians in the Lancet Child and Adolescent Health (an academic journal owned and operated by the huge digital publishing corporation Elsevier). Practical damage, I mean, inflicted on the struggling advocacy movement to support children and adults living with fetal alcohol spectrum disorders and to improve diagnosis rates. ¹ The lead author of the opinion piece is Dr. Sabrina Eliason, a professor of developmental pediatrics at the University of Alberta and — nominally at least — director of what used to be a gold-standard FASD diagnostic clinic at the Glenrose Rehabilitation Hospital in Edmonton. ² She was, in fact, the clinician who led the team that gave my now 12-year-old daughter a diagnosis of FASD in Oct of 2021.

And yet Eliason has now put her name behind an editorial asserting that a diagnosis of fetal alcohol spectrum disorder causes harm. Yes, incredible as it sounds, Eliason et al. contend that the diagnostic terminology itself causes more harm than the teratogenicity of prenatal alcohol exposure. This is already an extremely dubious assertion, but Eliason et al. do not stop there. Without evidence, and with startlingly circular logic, they contend, as a reason for retiring the diagnosis, that there are very few individuals for whom prenatal alcohol exposure is “the known and primary cause of a person’s disability”: “[An assessment team’s use of the term] fetal alcohol spectrum disorder implies that prenatal alcohol exposure is the known and primary cause of a person’s disability, which is an implication we argue is no longer tenable for most individuals” (840).

That prenatal alcohol exposure for various reasons very often cannot be confirmed to be the “primary cause” of neurobehavioural challenges in a particular human being is of course the essence of the problem — the reason why prevalence estimates are vastly out of proportion to the relatively small numbers of people who ever get diagnosed. But Eliason et al. do not own up to the scale of the institutional failure to diagnose FASD. Nor do they dispute the neurologically ruinous effect of alcohol on human embryos and fetuses. What they would like is for clinicians to “revise their terminology” so that diagnostic failure becomes less obvious.

I am troubled by what is a forseeable outcome of such a frothily quasi-scientific argument being disseminated under the Lancet name (and by the Elsevier monopoly): it will almost certainly undermine the grassroots work being done in Canada and internationally to improve the lives of people living with FASDs. ³

The Eliason et al. piece, “Asking difficult questions in the context of the child, the mother, and the systems in which they live,” is deeply flawed in its argument, in its analyses, and in the paucity of evidence for its claims. The five authors’ argument, moreover, is disconnected from the world of people living with an FASD over a life-span, from communities of caregivers, and from Indigenous communities. ⁴ In the coming weeks, I will be writing a detailed critical reflection on the opinion piece and the political and cultural contexts that might explain how an ostensibly progressive intervention could go so wrong.

For now, however, I am posting three documents: a) a five page rebuttal of Eliason et al.’s argument by CANFASD, the national research network devoted to this neurodevelopmental disorder, whose writers begin by noting that they are “surprised and troubled by the views and opinions expressed in [the Lancet] paper”; b) my own letter to the Lancet, written in September, unpublished (and, for that matter, unacknowledged) by its editors; and c) a PDF of the Eliason et al. article itself, which I post here in defiance of copyright laws so as to make it available to the public, and in particular to the larger FASD community, a stakeholder audience that Eliason et al. must have known would be mostly shut out by the Elsevier paywall from the “difficult conversation” they claim to welcome. (The purchase price of the article is a cool 36 $USD, or about 50 $CDN, so I got mine through MacEwan University’s interlibrary loan service). ⁵

—————————————————————————

LETTER to the EDITORS, LANCET CHILD AND ADOLESCENT HEALTH

[sent Sept. 25, 2025; unpublished]

Dear Editors:

As the adoptive parent of a twelve-year-old with a diagnosed fetal alcohol spectrum disorder, I strongly disagree with the argument of Dr. Sabrina Eliason and her colleagues. Eliason et al. do not in fact challenge recent epidemiological findings about prevalence rates of FASDs, nor do they call into question the neurological and physiological reality of the condition; instead, they advance claims about nomenclature, contending that the term used to refer to the disorder is what causes the greatest harm in the lives of people living with it. This is patently untrue. Dr. Eliason et al. assert that an FASD diagnosis “risks harm to those who receive it” — that a positive diagnosis does little else but perpetuate social stigma and racism. From my family’s experience, I assert the exact opposite: a diagnosis has protective value for a person living with FASD that has greater weight than that of the undeniable hurt and discomfort inflicted by stigma and misunderstanding. As the behavioural challenges associated with an FASD are different from those associated with autism or ADHD, a clinical diagnosis is crucial for a family to be able to make sense of what they are going through. Only with this language – and this knowledge – has my family been able to summon the determination to push back against (for instance) the backwardness of our city’s public school board. I could not be more disappointed that Dr. Eliason, the clinician who diagnosed my child, is more attuned to academic sensitivities than to lived realities.

Sincerely,

J. Mark Smith

Endnotes

¹ The FASD advocacy movement is almost invisible today in comparison to the public profile of autism advocacy groups. It struggles to translate an abundance of scientific knowledge into meaningful institutional practice and on-the-ground support for people and families living with FASD. For example, the admirable House of Commons Bill S-253, which seeks to establish a national FASD framework, has stalled at its second reading in the Canadian Senate, and will almost certainly not become law during this Parliamentary session, even though there has been no new national FASD policy for two decades.

² I say “nominally” because it is not clear to me how a physician who publicly records her belief that the FASD diagnosis “promotes racism and discrimination” can conscientiously continue at her day job of assessing FASDs among the brave children and adults who wait two years or longer and jump through a whole series of bureaucratic hoops in order to receive this life-changing diagnosis. The previous director of the clinic at the Glenrose was the pioneering Dr. Gail Andrew, who worked tirelessly to inform Canadians about the realities of FASD as well as to support people living with the condition.

³ The op-ed is a froth of academic self-promotion (“We call for urgent international collaborative action to review the use of [FASD] as a diagnostic
term and, more broadly, to reconsider the practice of diagnosing disabilities as medical illnesses”), progressivist good intentions / virtue signalling, anecdotes, imprecise conceptual and logical articulation, and inadequate contextualization of references from the scientific literature. More on its deficiencies of argument, and its authors’ disconnection from the larger FASD community, in my next post.

⁴ The lead image for this post, the back half of a t-shirt design by Surrey Place (Toronto) to mark Sept. 9, International FASD Awareness Day, shows Calls for Action #33 and #34 from the Indian Residential Schools Truth and Reconciliation Commission’s 2015 calls for action. (These calls are not mentioned in the Lancet opinion piece.) According to the artist, the front of “[t]his design reflects a child diagnosed with FASD being gifted and honoured by an Elder. Behind the parent holding the child, it shows individuals from all walks of life supporting the family. We are honoured to share and uphold important Indigenous teachings which have been shared with us on our healing journey. Firstly, that all babies/children have come to us to be our teachers. Secondly, that neurodivergent people are medicine carriers and knowledge bearers who have special skills and teachings the rest of the community would be without if not for them. They help our communities grow into spaces that are rooted in walking in a good way, which are safe, inclusive, and balanced. They are to be honoured.”

⁴ Only readers of the full article will have access to the “Declaration of Interests” statement near its end, which acknowledges that one of its authors, Dr. W. B. Gibbard “has a contract with Elsevier to edit a book and write a chapter regarding the harms of assessment and diagnosis for neurodevelopmental disorders. He received payment for this work.” It is not clear to me what Elsevier’s financial interest is in this topic nor why Gibbard would have been paid to contribute to this op-ed in a (supposedly) neutral and peer-reviewed — but Elsevier-run — journal. Perhaps there is a simple explanation that I am missing, but the optics are not good. (I cannot, that is, imagine a similar arrangement being okayed by an editor at any reputable journal in the humanities.)