Fetal Alcohol Spectrum Disorders (FASDs) remain the most preventable birth defect worldwide, but FASDs still occur at an alarming rate in many areas. FASD refers to the continuum of developmental disabilities caused by exposure to prenatal alcohol. FASDs are characterized by growth deficits, characteristic facial anomalies and neurodevelopmental problems. Historically, in the United States, studies done on the prevalence (i.e., how many people have it) of FASDs have primarily occurred with high-risk populations. Many have believed that FASD is a problem only for those ‘high-risk’ areas and not as much for the population at large. A recent publication in the Journal of the American Medical Association (JAMA) describes a prevalence rate of FASD based on eight general population samples in four diverse communities across the United States. The study provides evidence that should begin to change that perception.
Here are 4 key takeaways from this landmark study:
1. FASDs occur much more often than previously reported.
This article reported that between 1.3 – 5% of first graders in the participating four communities met diagnostic criteria for a FASD using conservative methods to calculate prevalence rates. This is more than 5 times higher than previously estimated rates, and weighted estimated rates indicated a rates in some samples that were 10 times higher than previously accepted rates. FASDs are not rare, in fact, they occur at the same or at higher rates than autism.
One of the strengths of this study was how children were evaluated and identified with a FASD. A research method called ‘active case ascertainment’ was used. In active case ascertainment, the research team goes right into a real-world setting to directly evaluate children. In this study, the research teams went into public and private elementary schools in four participating communities with over 13,000 children enrolled in first grade classrooms. Parental consent was gained from approximately 60% of parents to have their children evaluated and measurements of growth taken. Further assessments were done on subsets of children on their cognitive development, general learning and a physical evaluation completed by a pediatric dysmorphologist. Dysmorphologists are specially trained physicians on birth defects. In addition, a specially-trained interviewer talked with the child’s parents and guardians about the family history and exposures during pregnancy. This type of data collection is necessary because FASDs often go unrecognized or misdiagnosed.
2. FASDs often go unrecognized or misdiagnosed.
In this study, only two of the 222 children identified with a FASD had received a previous diagnosis. Since these children were seen in first grade, it is possible some had not yet or may never have presented for clinical care. These children might have been diagnosed with other conditions or missed altogether. Typically, FASDs are diagnosed in medical clinics and require experienced clinical judgment. Ideally, the diagnosis occurs within a team of providers from different backgrounds that can assess multiple aspects of the child’s development and history, including physical, mental and social development. Unfortunately, many clinics do not have providers or teams experienced in identifying FASDs.
Given that a minimum of 1.3-5% of children in the United States have a FASD, all teachers, physicians, nurses, daycare providers and social service agencies should be knowledgeable about FASDs. Early and accurate identification can allow for earlier intervention and support services to help children achieve their maximum potential. Training for medical providers, teachers and others is needed to help with earlier identification of FASD. Also, early identification of a child with FASD can help guide prevention efforts. The mother of the affected child may have additional pregnancies and is therefore a prime candidate for intervention efforts.
3. More services for children identified with FASD are needed
The high number of children identified with FASD in this study suggests that there are many affected by prenatal alcohol exposure who are not receiving adequate intervention and support services. Even if we can better identify those with a FASD, we also need to be able to supply the appropriate intervention services. We hope these findings will support more deliberate and targeted services within schools, health care and communities to help children with FASD reach their full potential. It is common for individuals with FASD to have other secondary disabilities (e.g., mental health problems, poor academic achievement, school failure, and involvement with the law). It is the consensus of a number of experts that providing effective intervention and support services early in a child’s life may help decrease the severity of other secondary disabilities or prevent them altogether.
4. Prevention, prevention, prevention.
While we have gotten better at identifying children affected by prenatal alcohol exposure, we have not necessarily gotten better at preventing it from happening in the first place. Some individuals continue to drink during pregnancy, and drinking is most common between conception and first recognition or clinic confirmation of the pregnancy. Furthermore, substance use treatment programs are not always readily available and health care providers may be reluctant to ask directly about drinking behavior.
Unfortunately, the public health messaging around the dangers of drinking during pregnancy are not always consistent. This can lead to confusion about the actual risk. Much more attention is needed from policy makers, clinicians, researchers and the public on prevention efforts. This may include prevention messaging on the very real dangers of drinking during pregnancy, making intervention programs more widely accessible, and better identification of children affected by prenatal alcohol exposures. The American Academy of Pediatrics (AAP) has endorsed a clear message that there is no safe amount, time or type of alcohol when it comes to alcohol use during pregnancy or when trying to get pregnant.
Amy Elliott, PhD, co-author of the 2018 landmark FASD study published in JAMA, is the Chief Clinical Research Officer at Avera McKennan Hospital and University Health Center.