What is FASD (Fetal Alcohol Spectrum Disorders)?

September is Fetal Alcohol Spectrum Disorder (FASD) Awareness Month. To help raise awareness on this important topic and address myths about alcohol consumption during pregnancy, I will be putting out a series of blog posts over the coming weeks.

In this first blog, I review FASD basics and talk about my personal connection to FASD.

How did I learn about FASD?

You may be wondering to yourself why a dietitian cares so much about FASD. And for good reason. During my training to become an RD, the extent of my education on alcohol consumption during pregnancy was limited, to say the least.

My interest in FASD started when I was in college. At the beginning of my sophomore year, I decided to join a neuroscience research lab. The research I was involved in focused on the impact of alcohol exposure on specific regions of the developing brain, such as the prefrontal cortex and hippocampus, as well as interventions to ameliorate alcohol-induced damage. I observed long-lasting chemical and anatomical changes in the brain that were a direct result of early alcohol exposure. In addition to this research, I participated in journal clubs and was immersed in a body of literature on a topic that I had never heard about prior to the fall of 2009. These experiences instilled in me a passion for the topic of alcohol and pregnancy.

I ended up working in this lab for over six years, completing two thesis projects, earning Bachelor of Science and Master of Science degrees in Neuroscience, co-authoring peer-reviewed journal articles, and presenting data at conferences. When I decided that I wanted to become a registered dietitian, I got a lot of questions about whether I wanted to ultimately find a way to integrate my neuroscience background into my new career path. What I never expected is that I would get the opportunity to combine my passion for nutrition with my knowledge and interest in the topic of alcohol and pregnancy.

When Diana invited me to work with her on a mocktail book for pregnant women, I knew that this was an opportunity to spark a conversation and deliver evidence-based information to empower women to make an informed choice about alcohol use during pregnancy. Our book, Drinking for Two: Nutritious Mocktails for the Mom-to-Be was the epitome of a passion project for me.

Unfortunately, I see social media influencers as well as healthcare professionals providing mixed messages and incomplete regarding alcohol and pregnancy without any context or acknowledgment of the potential risks. And that’s not okay.

I will be the first to acknowledge that research on health and nutrition is rarely ever clear-cut, and when it comes to alcohol and pregnancy, it gets especially complicated. As a health professional and former researcher, I am here to present the facts and paint a complete picture of the knowledge that we have (and don’t have) to the end of supporting the BEST advice--not the popular opinion or even my own views.

My ultimate goal is to empower women to make an informed choice for their pregnancy and to deliver information in a way that is supportive and non-judgmental.

Grab a copy of Drinking For Two today!

What is FASD?

Image obtained from the CDC

Fetal Alcohol Spectrum Disorders (FASD) is a term that describes the wide range of physical, cognitive, and behavioral effects that may result from alcohol exposure during pregnancy. There are several diagnoses that fall under the umbrella of FASD. Fetal Alcohol Syndrome (FAS) is the most well-known diagnosis and is characterized by the presence of distinct facial features as well as neurobehavioral effects and growth retardation. The negative effects of prenatal alcohol exposure are lifelong and do not disappear with age; though, facial features may become more difficult to identify in adults. While there are interventions for individuals with these conditions, there is no cure.

Alcohol during pregnancy may impact physical development, and children with an FASD may exhibit growth deficiencies and facial abnormalities. Many of the effects of alcohol exposure during pregnancy stem from the impact of alcohol on the developing brain. Alcohol-related brain damage can result in difficulties with learning and memory, regulation of emotions, attention, and communication. Interestingly, most children with FAS have an IQ greater than 70, meaning they are not “intellectually disabled;” however, studies suggest that children with FASD may have impaired intellectual ability [1]. Individuals with FASD are also more likely to struggle with mental health disorders and substance abuse, and to exhibit behaviors such as hyperactivity and impulsivity [2].

What causes FASD?

Image obtained from the CDC

FASDs are caused by prenatal exposure to alcohol. Thus, FASDs are 100% preventable if a developing child is not exposed to alcohol in utero. It is a myth that heavy or binge drinking is the only cause of FASD. Rather, the effects of alcohol on the developing child depend on the timing, dose, and pattern of exposure, among other factors.

This is why the CDC, American Academy of Pediatrics, American College of Obstetrics and Gynecology, the U.S. Surgeon General, and countless other reputable organizations support the message that there is no known safe time or amount of alcohol to consume during pregnancy.

An individual might drink while they are pregnant for several reasons. For example, they might not know they are pregnant. In fact, the CDC estimates that almost half of pregnancies aren't planned. Other reasons include that an individual may not be aware of the potential risks associated with drinking during pregnancy, they may be battling addiction, etc. ⁠

How common are FASDs?

FASDs are a leading cause of developmental disability in the U.S. and worldwide. A 2018 study evaluated first-graders from four regions in the U.S., reporting that 1.5-5% of children met criteria for an FASD. Based on the estimated global prevalence of FASD reported in a recent meta-analysis, the authors suggest that one in every 13 women who drinks during pregnancy may give birth to a child with FASD; that translates to 1700 children per day and over 600,000 children per year globally.

FASD disproportionately impacts sub-populations, namely children in foster care. For example, a meta-analysis found that the prevalence of FASD among children in care in the U.S. was 32 times higher than the aforementioned estimated global prevalence.

Why haven’t I heard of FASD if it is so common?

Many children with FASD do not receive a diagnosis until later in life, if ever. For example, only two of 222 children who met criteria for an FASD in the 2018 U.S. prevalence study mentioned above had a diagnosis under the umbrella of FASD prior to this study. Diagnosis of FASDs is extremely challenging for numerous reasons, including but not limited to:

Self-reported maternal alcohol use during pregnancy may be inaccurate or lacking altogether. Stigmatization of drinking during pregnancy and attached to the diagnosis contributes to this.
Demographics of the child, including their age and race, may influence diagnostic decisions.
Lack of awareness in the general population as well as training of healthcare professionals.
FASDs are incredibly heterogeneous, and the effects of prenatal alcohol exposure may be subtle.
Some features of FASD are non-specific and overlap with other developmental disorders, such as ADHD and autism.

Furthermore, there is neither a universally-utilized tool nor a standard against which these tools can be validated, let alone a medical test or biomarker to more definitively diagnose FASD. Rather, there are numerous “systems” available to characterize prenatal alcohol effects. While these use common criteria as a foundation, these tools do not consistently produce the same result; for example, one system might lead to an FASD diagnosis for a child, while another may not [3].

More awareness and training as well as better diagnostic tools are needed to ensure that children are diagnosed as early as possible. Early diagnosis is critical to getting a child and family appropriate support and treatment, and may reduce the risk of secondary disabilities, such as mental health problems and alcohol and drug use [4]. Furthermore, discrepancies in how FASD is diagnosed hinders the ability to compare data from different studies and to improve our understanding of FASDs.

Stay tuned for future blog posts, where I will be delving into the literature on alcohol and pregnancy and fertility.

If you're concerned about yourself or a loved one’s alcohol use, talk openly with a healthcare provider. The NIAAA offers reliable online resources, including a Treatment Navigator, which contains information about how to talk with a medical provider, evidence-based treatment options, and cost and insurance coverage. The Substance Abuse and Mental Health Services Administration (SAMHSA) maintains a free and confidential hotline at 1-800-662-HELP (4357) and provides information and treatment referrals in English and Spanish 24/7, 365 days a year. You can find additional information and resources on their website at https://www.findtreatment.gov/.