A couple of years ago on this blog, I told the story of Lula. Born in Russia, Lula was an adopted child who was demonstrating classic behavioral and emotional difficulties associated with prenatal alcohol exposure; however, there was no documentation of alcohol exposure in any of the records the adoptive family was able to obtain. Her story raised the issue of a diagnosis that could describe her condition and could make her eligible for the many services she needed in the early intervention and school systems.
Words are important, and how we use them to describe a child’s plight while at the same time avoiding a damaging label is something physicians, psychologists, and families face on a daily basis. This issue came to a head over the past few years as the American Psychiatric Association (APA) developed the fifth edition of its Diagnostic and Statistical Manual (DSM 5). The purpose of this manual is to bring consensus to diagnostic criteria and to establish common language that can be used in defining – and coding – behavioral health conditions that affect children and adults.
Inclusion of Fetal Alcohol Syndrome (FAS) and its associated conditions that fall along a continuum has long been a contentious issue. One of the biggest barriers has been a lack of consensus on the diagnostic criteria within the spectrum and the terminology used to label those conditions. The original description of Fetal Alcohol Syndrome, established in the early 1970s, was fairly straight forward – growth failure, intellectual disability, and characteristic changes in the facial structure. However, as experience with children prenatally exposed to alcohol grew, clinicians and researchers realized the clinical presentation is not nearly as straightforward as originally thought. The term “fetal alcohol effects” emerged; it was used to describe children whose behavior and cognitive functioning had been affected by their mother’s use of alcohol during gestation but whose growth and facial features, as well as global cognitive functioning, were normal or did not meet specific deficits. The Institute of Medicine and the Centers for Disease Control and Prevention (CDC) both published diagnostic criteria for FAS, partial FAS (or FAS with normal growth), Alcohol Related Neurodevelopmental Disorder (ARND), and Alcohol Related Birth Defects (ARBD). In 2004, the CDC introduced a new term, Fetal Alcohol Spectrum Disorders (FASD), an umbrella term intended to encompass all individuals along a broad continuum of clinical deficits related to prenatal alcohol exposure. What has resulted is an alphabet soup of terms and multiple interpretations of clinical status, with an inconsistency in clinical practice as well as in the research literature.
The federal government’s Interagency Coordinating Committee on FASD (ICCFASD – sorry, another acronym!) has worked hard through its various subcommittees over the past eight years to try to come to terms with diagnostic criteria. These efforts have culminated in generally accepted diagnostic criteria for FAS and fairly good consensus as to the diagnostic criteria for children who have been exposed prenatally to alcohol but who do not meet full criteria for a diagnosis of FAS. New terminology was developed for this second group – Neurodevelopmental Disorder-Prenatal Alcohol Exposure (ND-PAE).
With this information in hand, a small group of researchers and clinicians with significant experience in working with individuals with prenatal alcohol exposure presented a strong case to the APA for inclusion of a diagnostic category for individuals affected by prenatal alcohol exposure in the DSM 5. There’s bad news and good news. The bad news is that ND-PAE failed to be listed in the DSM 5, although it is included in the appendix as conditions needing further study (page 798). The good news is that ND-PAE is used as an example for “Other Specified Neurodevelopmental Disorder,” code 315.8 (page 86).
What does this mean? It means that children, youth, and adults that were exposed prenatally to alcohol and with neurodevelopmental deficits consistent with those that have been demonstrated in the research literature to be associated with alcohol’s toxicity now have a diagnostic code. This code triggers payment for services related to the condition as well as helps individuals access needed interventions and treatments. It’s actually great news!
But there is a lot of work left to do. Researchers in the field need to determine what levels of alcohol exposure are necessary for producing associated deficits and how to clearly differentiate ND-PAE from other common conditions expressed through neurobehavioral changes, for example, Attention Deficit Hyperactivity Disorder (ADHD). Clinicians need to familiarize themselves with the broad spectrum of clinical manifestations with which individuals affected by prenatal alcohol exposure may present. And parents of children who may have been affected by prenatal alcohol exposure need to educate clinicians with whom they work, so as to ensure all children and youth receive the interventions and specific therapies they require.
It’s an exciting time that brings new challenges—but also a wealth of opportunities.