I hear it all the time now. “Oh, he has FASD.”
Well, no he doesn’t, because there is no such thing.
Confused? So are most people.
In March of this year I posted a discussion of the new DSM-5 terminology and its attempt to begin to clear up the morass of initialisms used to describe individuals affected by prenatal exposure to alcohol. The term “fetal alcohol syndrome” (FAS) has remained a constant over the years, with clear diagnostic criteria (impaired growth, facial dysmorphology, and neurodevelopmental deficits). But, in referring to those children and youth whose mother drank alcohol during pregnancy and who suffer neurodevelopmental deficits but show partial or no apparent expression of physical features associated with alcohol exposure, there has been a long history of changing terminology.
In the early days, those individuals with minimal to moderate facial changes or no changes at all but who had problems with intellectual, behavioral, or emotional development were labeled as fetal alcohol effects (FAE). However, research over the last two decades has demonstrated that these individuals may have significant structural and functional changes in the brain, even though they lack overt physical manifestation of the alcohol exposure. Guidelines published by the Institute of Medicine (IOM) and the Centers for Disease Control and Prevention (CDC) attempted to lay out diagnostic criteria that can be applied to the varied pictures with which children, adolescents, and adults prenatally exposed to alcohol can present, with a wide range of terminology: partial FAS (pFAS), alcohol related neurodevelopmental disorder (ARND), and alcohol related birth defects (ARBD). Finally, in the past year, the DSM-5 has coined the term neurodevelopmental disorder with prenatal alcohol exposure (ND-PAE). The diagnosis of ND-PAE, included in the DSM-5 as a “Condition for Further Study” and used as an example as a specified condition under DSM-5 code 315.8, is intended to replace the term ARND. Through the criteria laid out in the DSM-5, the diagnosis of FAS would fall under ND-PAE.
This is all well and good, but in April 2004, a consensus definition of fetal alcohol spectrum disorders (FASD) was developed: FASD is: “…an umbrella term describing the range of effects that can occur in an individual whose mother drank during pregnancy.” From this definition, it can be seen that FASD is not meant to serve as a diagnostic term, but rather a unifying one to help us appreciate the many ways in which prenatal alcohol exposure can become manifest in the affected individual. However, the term has quickly evolved into a catch-all phrase that even in the professional literature frequently is misused. In many articles, FASD is used in the singular implying that it is a specfic entity. However, there are no criteria for FASD in and of itself; it merely is an overarching term for a group of various diagnoses. On the other hand, if we were to use the term FASDs, this would indicate that there are multiple diagnoses under the umbrella term. Most importantly, FASDs would reinforce the idea that FASD is not a diagnosis. According to the Chicago Style Manual, an acronym can be made plural if the last letter indicates the plural item. The “D” in FASD is plural as it represents a wide range of diagnoses; thus, to be perfectly correct, FASD should be banned from the literature and from our conversations, replaced by the term FASDs.
Why is this important? Because too often we hear of a child who has been “diagnosed as FASD.” Since there are no diagnostic criteria for FASD, the child is being labeled without due consideration of his clinical condition. This has potential for harm, hampering any planning for appropriate treatment and intervention over the long term. In producing a new film and book on adolescents with fetal alcohol spectrum disorders to be released later this year, I have struggled with this issue and, after thinking it through, have a proposal.
If a child meets full criteria for FAS, then that is the diagnosis. If the child with confirmed prenatal exposure to alcohol does not meet facial and growth criteria, but meets the DSM-5 neurodevelopmental criteria for ND-PAE, that diagnosis should apply. We then would drop the terms pFAS and ARND, retaining ARBD for those few individuals with prenatal alcohol exposure and dysmorphology but normal neurodevelopmental functioning. (I think I can count on one hand the number of children I’ve diagnosed with ARBD, but we’ll leave it in the mix for right now.) So what are we left with? FASDs is the overarching term that includes all individuals who meet diagnostic criteria for FAS, ND-PAE, and ARBD. See how simple we can make it, all the while cleaning up the alphabet soup? Plus, this approach holds us all to specific diagnostic terminology that can only help improve the research literature as well as clinical services to children, adolescents, and adults affected by prenatal exposure to alcohol.