A Refresher on Fetal Alcohol Syndrome

FASD Awareness Month

Fetal alcohol spectrum disorders (FASD) Awareness Month is September and International FASD Awareness Day was September 9, 2022. September of 2015 was the first annual FASD Awareness Month, so this health observance is relatively new. The first FASD Awareness Day was celebrated on 9/9/99. For those who may not know how FASDay was started, the complete story was told by Teresa Kellerman in August 2005: The Birth of FASDay: The Real Story.The “Readers Digest” version of the story is: “The question was, “What if a world full of fetal alcohol parents all got together on the ninth hour, of the ninth day of the ninth month of the year and asked the world to remember that during the nine months of pregnancy a woman should not drink alcohol?” They asked, “Would the world listen? This simple question launched a worldwide, grassroots movement, organized on e-mail list serves and on the World Wide Web to ask that communities everywhere observe Fetal Alcohol Syndrome Awareness Day on September 9. The first International Fetal Alcohol Syndrome Awareness Day, or FASDAY as it is known, was observed on September 9, 1999. In the ensuing years, the number of communities observing FASDAY has grown and grown.” There are some great ideas for observing FASD Awareness Month on the CDC’s website or at FAS United.

What Is FASDs?

FASDs is an umbrella term used to describe a group of conditions that affect babies whose mother drank alcohol during the pregnancy. The specific terms for each of the conditions identified by research are:

1. Fetal Alcohol Syndrome (FAS)
2. Partial Fetal Alcohol Syndrome (pFAS)
3. Neurodevelopmental Disorder associated with prenatal alcohol exposure (ND-PAE)
4. Alcohol-related Neurodevelopmental Disorders (ARND)
5. Alcohol-related birth defects (ARBD)

The ND-PAE diagnostic criteria is now officially in the DSM-5.  Additional information on diagnosis is available on the NOFAS Recognizing FASD web page.

What Are The Effects Of FASDs?

The physical effects of FASDs include:

1. Facial features
   • Smooth philtrum
   • Thin upper lip
   • Small palpebral fissures
2. Growth deficiency
   • Prenatal and/or postnatal height and/or weight
   • Small head size
3. Central nervous system abnormalities
   • Poor coordination, muscle control, sucking as infant

Behavioral effects of FASDs include:

1. Poor social skills
2. Substance use disorders
3. Additional findings, such as behavioral inhibition, mood or behavioral impairment, or daily living skills as documented in: Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure

Cognitive impairments of FASDs include:

1. Intellectual disability
2. Executive functioning deficit
3. Psychiatric disorders
   • Anxiety, mood disorders, ADHD
     • “A team of researchers found those exposed to alcohol in the womb showed altered brain connections which were consistent with impaired cognitive performance. According to Celso Grebogi of the research team: ‘Our study shows there is no safe amount or safe stages during pregnancy for alcohol consumption. Furthermore, there is not only loss of connectivity in the brain, but it may result in cognitive impairments such as autism, schizophrenia, dementia.’” The full research article Quantitative assessment of cerebral connectivity deficiency and cognitive impairment in children with prenatal alcohol exposureis available to read from the Chaos: An Interdisciplinary Journal of Nonlinear Science.
   • Mental health issues in fetal alcohol spectrum disorder, including “High rates of mental disorders within the FASD and prenatal alcohol exposure (PAE) population were found to be consistently reported for both internalizing and externalizing disorders. Moreover, problems that emerge in childhood may reflect a convergence of genetic, environmental, and neurophysiological factors that persist into adulthood” (Pei et all., 2011).

What Causes FASDs? How Can They Be Prevented?

The cause of FASDs is the use of alcohol or other teratogens (including radiation, maternal infections, chemicals, and drugs) during pregnancy. While FASDs are preventable by not using alcohol or other elements that can harm a fetus during pregnancy, or by preventing pregnancy itself through birth control, research has shown that there is no safe level of alcohol use during pregnancy Gao, et al., 2019).

Early Identification And Prevalence: Six Surprising Research Findings

According the NOFAS fact sheet FASD Identification, recognizing Fetal Alcohol Spectrum Disorders is often difficult. Yet screening and early identification of FASDs is vital to getting appropriate educational and mental support. As screening for FASDs becomes more commonly implemented, some interesting facts about prevalence have been identified through research:

• The incidence of FASDs may be higher than autism (May, et al., 2017; Flannigan, et al., 2018).
• Prenatal alcohol exposure appears to affect a significant proportion of children in the foster care system (Szetela, et al., 2015).
• One study found the FAS prevalence estimate to be 15 cases per 1,000 children (Astley, et al., 2002).
• A recent review of the literature found that certain population groups worldwide have rates of FASDs 10-40 times higher than the general population. These groups include those in foster care, those in correctional services, those in special education services, Aboriginal populations, and people who use specialized clinical services (Popova, et al., 2019).
• In addition to research that supports a higher prevalence rate than previously thought, FASDs may be misdiagnosed or the diagnosis missed altogether in children or adults who are or have been in foster care or adopted (Chasnoff, et al., 2015).
• In a case history of an adult male patient who was diagnosed with Schizophrenia and possible Bipolar Disorder without benefit of a complete neonatal history, authors attest that lack of a thorough history and lack of awareness of ND-PAE symptoms may result in missed or misdiagnosis in adults (Bell, & Chimata, 2015).

What Can Behavioral Health Providers Do?

• The importance of professional development and education for providers cannot be stressed enough. Fortunately, there are many resources available and more are being developed all the time.
• Providers can use the websites and resources identified and cited here to learn more about FASDs and to keep up with the rapidly developing research base.
• This September promote awareness of FASDs within your own sphere of influence. Put up the posters, print out and have fact sheets available for your clients or patients and their families.
• Screen and promote screening among your colleagues no matter what their specialty. Bring it to the level of conversation and share the resources you’ve found.
• Observe FASD Awareness Day every day. Every day is a good day to promote awareness of FASDs.

For additional data and research about FASDs, read our archived post: Alcohol-Exposed Pregnancies: Are Fetal Alcohol Spectrum Disorders More Prevalent Than Previously Thought? 

Websites For Behavioral Health Professionals

For behavioral health professionals, two websites can provide resources that can be used for professional development and for use with clients and patients. The first is the National Organization on Fetal Alcohol Syndrome (NOFAS). The NOFAS mission states “NOFAS works to prevent prenatal exposure to alcohol, drugs, and other substances known to harm fetal development by raising awareness and supporting women before and during their pregnancy, and supports individuals, families, and communities living with Fetal Alcohol Spectrum Disorders (FASDs) and other preventable intellectual/developmental disabilities.” The NOFAS purpose is “NOFAS educates the public, practitioners, and policymakers about the risk of prenatal exposure to alcohol, drugs, and other substances known to harm fetal development including tobacco, marijuana, heroin and other opioids, cocaine, and methamphetamine, recognizing that these substances are often used simultaneously. NOFAS supports individuals and families living with FASDs through referrals, advocacy, training for professionals, information dissemination, and a wide range of diverse initiatives and resources.”

The second useful website for behavioral health professionals is the Medical Assistant Fetal Alcohol Spectrum Disorders Practice and Implementation Center (Medical Assistant FASD PIC). “The overall goal of the Medical Assistant Fetal Alcohol Spectrum Disorders Practice and Implementation Center (Medical Assistant FASD PIC) is to introduce, improve, and sustain the knowledge and practice behaviors of medical assistants (MAs), particularly MAs certified by the American Association of Medical Assistants, in preventing and intervening with risky and hazardous alcohol use which are supported by the adoption of evidence-based interventions in clinical practices. Specifically, this project is focused on reducing and ultimately preventing alcohol-exposed pregnancies by way of utilizing medical and allied health professionals working on interprofessional health care teams who have access to patients who are pregnant or are of reproductive age. Here is more information about the partnership between the Medical Assistant FASD PIC and the AAMA.” Two important products of the Medical Assistant FASD PIC are the Introduction to FASDs: The Medical Assistant’s Role training and the FASD Competency-Based Curriculum Guide. Additional courses and guides on a variety of topics from an FASD Primer for Healthcare Professionals to FASD Prevention Communication Skills Training and even a poster, Words Matter!, about using thoughtful language to improve communication with patients are available on the Medical Assistant FASD PIC products page.

Additional resources can be found in the CASAT OnDemand Resources and Downloads section.

For a “deep dive” into FASDs, including additional research articles, books, webinars, and online trainings, infographics, and tools, visit the CASAT OnDemand Fetal Alcohol Spectrum Disorders (FASDs) Learning Lab.

Many thanks to Marinn Clampit for her research and writing assistance in producing this post.

References

Astley, S. J., Stachowiak, J., Clarren, S. K., & Clausen, C. (2002). Application of the fetal alcohol syndrome facial photographic screening tool in a foster care population. Journal of Pediatrics, 141(5), 712-717.

Bell, C. C., & Chimata, R. (2015). Prevalence of neurodevelopmental disorders among low-income african americans at a clinic on Chicago’s south side. Psychiatric Services, 66(5), 539-542. doi:10.1176/appi.ps.201400162

Chasnoff, I.J., Wells, A.M., & King, L. (2015). Misdiagnosis and missed diagnoses in foster and adopted children with prenatal alcohol exposure. Pediatrics, 135(2), 264-270.

Gao, L., Grebogi, C., Lai, Y., Stephen, J., Zhang, T., Li, Y., . . . Sommerlade, L. (2019). Quantitative assessment of cerebral connectivity deficiency and cognitive impairment in children with prenatal alcohol exposure. Chaos (Woodbury, N.Y.), 29(4), 041101.

May, P. A., Chambers, C. D., Kalberg, W. O., Zellner, J., Feldman, H., Buckley, D., . . . Hoyme, H. E. (2018). Prevalence of fetal alcohol spectrum disorders in 4 US communities. Jama, 319(5), 474-482. doi:10.1001/jama.2017.21896

Pei, J., Denys, K., Hughes, J., & Rasmussen, C. (2011). Mental health issues in fetal alcohol spectrum disorder. Journal of Mental Health, 20(5), 473-483. doi:10.3109/09638237.2011.577113

Society for the Study of Addiction. (2019, April 30). Fetal alcohol spectrum disorder prevalence is very high in susceptible groups worldwide. ScienceDaily. Retrieved September 11, 2019 from www.sciencedaily.com/releases/2019/04/190430091840.htm

Szetela, C., Mitchell, K., Donaldson, T., Levine, R., & Wedding, D. (2015). Competency VII: Competency VII: Ethical, legal, and policy issues. In Regional Training Centers Curriculum Development Team (Ed.), Fetal Alcohol Spectrum Disorders Competency-based Curriculum Development Guide for Medical and Allied Health Education and Practice.

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