Allison's first-grade son has been losing focus in school, fidgeting, and misplacing things. Despite an ADHD diagnosis and prescription medications, his symptoms are not improving. Allison's son may have a condition that falls under the umbrella of Fetal Alcohol Spectrum Disorders, or FASDs. FASDs represent a group of conditions that, despite their significant impact, often fly under the radar. Shaneca Smith, a dedicated RN with 17 years of experience in maternal and pediatric quality improvement and a fervent advocate for FASD awareness in Arkansas, recently appeared on AFMC TV to shed light on this critical issue and the efforts being made to combat it.
In this blog:
1. What are Fetal Alcohol Spectrum Disorders?
FASDs are a range of effects that can occur in an individual who is exposed to alcohol during fetal development. These effects can include physical, behavioral, and learning disabilities with lifelong implications.
2. How are FASDs diagnosed?
Diagnosing FASDs can be challenging due to their wide-ranging and variable symptoms. Common effects include difficulty with judgment, learning challenges, and physical problems, such as low body weight and coordination issues. Diagnosis often requires a nuanced understanding and approach.
3. Why might FASDs go undiagnosed or be diagnosed late?
The stigma surrounding alcohol consumption during pregnancy and the hesitancy among medical professionals to diagnose FASD may contribute to late or missed diagnoses. Additionally, the wide range of symptoms makes FASDs difficult to recognize.
4. How does societal stigma affect FASD diagnosis and management?
Stigma can prevent mothers from discussing alcohol use during pregnancy, leading to incorrect diagnoses. It can also cause individuals with FASD to be stereotyped, which impacts their self-perception and willingness to seek help.
5. What is recommended for managing FASDs?
A multidisciplinary approach is best for managing FASD, as there is no cure. Early intervention and services, such as therapy and medication management, can improve a child’s development. Education and awareness about FASD is also critical.
Recognizing the Signs of FASD
“FASD is an umbrella term that describes the range of effects that can occur in individuals who are exposed to alcohol during the nine months before birth,” Shaneca says. Some of these effects include physical and mental behavior problems or learning disabilities that have lifelong implications for the affected individual. FASDs are conditions that require a nuanced understanding and approach for effective management.
Diagnosing FASD can be challenging due to its wide-ranging and variable effects. “Some of the most common effects are difficulty identifying dangerous people or situations,” Shaneca said. “This could be a teenager who is unable to discern right from wrong due to FASD. They may be caught up in a situation they do not fully understand and face unintended consequences, including incarceration.”
According to the Centers for Disease Control and Prevention (CDC), a person with FASD may experience:
- Behavioral issues
- Hyperactive behavior
- Attention deficits
- Poor reasoning and judgment skills
- Learning challenges
- Poor memory
- Learning and intellectual disabilities
- Speech and language delays
- Physical problems
- Low body weight
- Poor coordination
- Complications with the heart, kidneys, or bones
- Vision or hearing problems
- Shorter than average height
This complex range of conditions can also affect a number of facial features, including:
- Thin upper lip
- Smooth philtrum (the ridge between the upper lip and nose)
- Underdeveloped Cupid’s bow
- Cleft lip
This broad range of symptoms has led to several individuals going undiagnosed or receiving late diagnoses. Shaneca shared the story of a woman living with FASD who was not diagnosed until she was 37:
“She went all her life thinking her symptoms were common. She experienced mental issues, heart problems, and nervous system complications. Her symptoms occurred every day of her life, but nobody knew what was causing them. This woman worked harder to do most things others take for granted. She needed constant reassurance and told me it often took her about five minutes to get her point across and explain things to people. It wasn’t until she was 37 that she found out she had a condition that fell within the range of FASDs. It would have been beneficial if she had been diagnosed earlier in life and had FASD interventions in place.”
Stigma Surrounding FASD
Because of the complexity of symptoms and the root cause of alcohol consumption during pregnancy, many women may be hesitant to discuss alcohol use with their providers, which can lead to incorrect diagnoses. “No woman wants to intentionally harm their baby,” Shaneca said. “But often, society will blame women who drink alcohol during pregnancy for their child’s disability. This can prevent them from speaking up about their alcohol use.”
Some parents may not want their child to be stereotyped as different or disabled. “When these children become adults, that same stereotype follows them, and individuals have negative perceptions about themselves.”
“It’s important to remember that alcohol is a legal and widely used substance, so there’s often hesitancy among mothers to stop consuming alcohol altogether, given its popularity,” Shaneca said.
Stigma also pervades clinical diagnoses. “A doctor may be less likely to diagnose a child with FASDs, and if they do, it may be one of the last diagnoses they consider,” Shaneca said. “There is also a hesitancy among doctors to tell women to stop consuming alcohol. Unfortunately, some still authorize the use of a little wine during specific trimesters of pregnancy.” Research shows, however, that no amount of alcohol at any point of the pregnancy is safe for the baby.
Correct diagnosis is vital to ensuring that individuals receive the proper support needed to thrive and live fulfilling lives. Early intervention also reduces the risk of secondary conditions that may come with FASD.
A Multidisciplinary Approach to Managing FASDs
Given its complex nature and a wide array of symptoms unique to each individual, Shaneca believes a multidisciplinary approach is best for early diagnosis and intervention. “There is no cure for FASDs, but research shows that intervention services can improve a child’s development.”
Effective interventions include therapy to help a child walk, talk, and interact with others, as well as medication management for specific symptoms, such as depression, sleep disorders, or attention deficits. Some interventions also include education for parents about FASDs and how to teach their children to cope with their condition and use skills and resources available to learn more about managing their condition.
Research and Resources
The CDC has a website devoted to FASDs that provides clinicians, educators, and families with links to helpful organizations, such as FASD United, the national voice of FASD. “This organization has over 30 years of experience in research, policies, practices, and shared experiences for individuals and their families living with FASD,” Shaneca said.
“Also, right here in Little Rock, we have Arkansas’s first center for diagnostics and resources on neurodevelopmental disabilities, which includes FASDs. The center is called the Specialty Diagnostic Resource Center (SDRC), and they are phenomenal. They have even received referrals from other states that do not have a center devoted to diagnosis, treatment, and training on FASD and other neurodevelopmental disabilities.”
The SDRC is open to anyone, requiring an appointment fee, which includes an interdisciplinary assessment, a full report, and specific accommodations for the child. The Center also offers training and resources for children and their families to learn about the symptoms of substance use, including FASD.
“The SDRC team is willing to work with individuals or families who want an evaluation,” Shaneca added. “If you’re interested or know someone who wants to be evaluated, I advise everyone to go to the SDRC website, arksdrc.org, to schedule an appointment or get more information. They will not turn someone away due to their inability to pay.”
Laying the Foundation for FASD Awareness
“With my current work at AFMC and my career as a maternal and child nurse, I have been tied to raising awareness of FASD,” Shaneca says. “I currently serve as the workgroup coordinator for Arkansas None for Nine, a nonprofit here in Arkansas working to support individuals and their families affected by FASD by raising awareness in our state.”
In 2018, Arkansas began efforts to bring attention to FASDs. This led to the formation of a task force comprised of AFMC, DHS, UAMS, and other local organizations in Arkansas. The task force developed a project for screening, diagnosing, and creating interventions for children on the FASD spectrum. That project ended in 2012, but work was not yet over.
“Several agencies later came together as volunteers and formed the Arkansas None for Nine, a nonprofit aligned with FASD United,” Shaneca said. “AFMC has been a longtime supporter and advocate of Arkansas None for Nine since the task force’s inception. We continue to serve as part of the board and help convene the workgroup.”
In addition to working with Arkansas None for Nine, AFMC works with the SDRC to raise awareness and offer training to practitioners on FASD symptoms and diagnosis.
Final Thoughts
“A recent study shows that one in 15 first-grade students in the US are affected by FASDs, but less than 1% of those individuals are diagnosed correctly,” Shaneca said. “This is sad, but we can change that through education and awareness.”
Early and accurate screening and diagnosis are key. Healthcare providers and professionals must stay up to date on research surrounding FASDs. Several training modules and resources are available through the SDRC and Arkansas None for Nine for providers, educators, and families.
“Arkansas None for Nine also hosts a biennial conference where we share information and updates about FASD with provider networks,” Shaneca added. “Coming to that conference to learn more about FASD is a great way to stay current.”
Educating mothers about FASDs and the dangers of alcohol consumption during pregnancy can also be effective. “Providers could also encourage women who are sexually active and consuming alcohol to consider a highly effective form of contraception to avoid or delay pregnancy,” Shaneca added.
FASDs are 100% preventable as long as a mother does not consume alcohol during pregnancy. As awareness grows and more resources become available, the potential for early diagnosis and effective intervention increases. We can improve outcomes and quality of life for those living with FASD through education, support, and continued research. This requires a collective effort that embraces the complexities of FASD, while offering support and understanding needed to make a meaningful difference.\
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Meet Shaneca Smith
Shaneca Smith, BSN, RN, CNOR(E), is Manager of the Medicaid Quality Improvement (MQI) team for AFMC. Her current efforts focus on assisting health care professionals in implementing quality improvement projects and initiatives, including those with an emphasis on maternal mortality and morbidity, developmental screenings, fetal alcohol spectrum disorders, and adult and childhood immunizations. Ms. Smith also serves as a lead facilitator and member of Arkansas' Fetal Alcohol Spectrum Disorders Workgroup, Arkansas None for Nine and as a board member for the Arkansas Immunization Action Coalition. Additional workgroup appointments include The Arkansas Perinatal Quality Collaborative Steering Committee, the Arkansas Birth Equity Taskforce, The Institute for Perinatal Quality Improvement, the Association of Women’s Health, Obstetric and Neonatal Nurses, and the HHS Maternal Mental Health Taskforce Subcommittee of the Advisory Committee for Women’s Services ACWS Subcommittee. The scope of her career has included: labor and delivery, pediatrics, adolescent health, rural community health, hospice, surgery, and quality improvement.
