CCPR: How is fetal alcohol syndrome (FAS) related to fetal alcohol spectrum disorders (FASD)?

Dr. Chasnoff: FASD is an umbrella term for neurodevelopmental conditions that occur with exposure to alcohol in utero. This includes FAS. FAS is the easiest to recognize because of the facial features, impaired growth below the 10th percentile, behavioral and neurocognitive deficits, and, perhaps, intellectual disability.

CCPR: How do rates of FAS compare with other causes of intellectual disability?

Dr. Chasnoff: If you combine children with autism, trisomy 21, trisomy 18, and all other neurodevelopmental disorders apart from FASD, FASD is the most common, though I’m not sure the studies comparing the numbers included lead poisoning. Children with FAS generally get services focused on intellectual disability through the school and do not come to mental health attention, although about 90% have co-occurring mental health conditions.

CCPR: So if we’re not seeing kids with FAS, who are the kids likely to be coming in for psychiatric services?

Dr. Chasnoff: You’ll see children with alcohol-related neurodevelopmental disorder (ARND) in pediatric or mental health practices. These children were exposed to any amount of alcohol in the womb and have a behavioral or learning problem. They don’t meet criteria for FAS—their growth is normal, their height and weight are above 10th percentile, and physically they look typical. But they have a significant neurobehavioral problem that, if we recognize it, can be amenable to specific supports and interventions. In the DSM-5, neurodevelopmental disorder with prenatal alcohol exposure is a diagnosis similar to ARND and listed in the back for further study. The definition ignores the facial features and growth issues typical of FAS and focuses on behavior and deficits in neurocognition, self-regulation, and adaptive function.

CCPR: How often do ARND and other instances of FASD go unrecognized?

Dr. Chasnoff: In our research, we found that 85.6% of children with FASD were misdiagnosed or missed completely. Many had failed a grade and were having trouble in school, but nobody had considered FASD or even done an evaluation of cognitive functioning (Chasnoff IJ et al, Pediatrics 2015;135:264–270).

CCPR: What is the prevalence of FASD?

Dr. Chasnoff: FASD impacts the entire range of ages all the way through adulthood. A study conducted in Midwestern US public schools found that 2%–5% of children meet criteria for FASD (May PA et al, JAMA 2018;319(5):474–482). The prevalence of alcohol use during pregnancy hovers around 18%, depending on the population (www.tinyurl.com/54ewnn8c). If that many people are using alcohol during pregnancy, where are the children who are affected? We found that 85.6% of children with FASD are misdiagnosed with conditions such as bipolar disorder, ADD, ADHD, and oppositional defiant disorder. FASD has a high rate of co-occurring mental health disorders, but the alcohol-related diagnoses were completely unrecognized.

CCPR: How should we get that history during an assessment?

Dr. Chasnoff: Most providers ask “You don’t use drugs, do you?” That closed-ended question says “Please tell me you don’t use drugs because I don’t want to deal with it.” We developed the only validated substance use screening instrument for pregnant people, called the 4Ps Plus©, with a predictive validity of 95%–97% (Chasnoff IJ et al, J Perinatol 2007;27:744–748). A key question uses very specific wording: “In the month before you knew you were pregnant, how much beer, wine, or liquor were you drinking?”

CCPR: What is the rationale behind this wording?

Dr. Chasnoff: The goal is to rule in or rule out any fetal alcohol exposure. In my experience, most people in the US do not consider beer or wine to be alcohol. So, we spelled it out—beer, wine, or liquor. But if you ask “In the month before you knew you were pregnant, did you drink beer, wine, or liquor?” the question lacks validity. It’s another closed-ended question and it’s easy to say no. You must ask “How much did you drink?” And if you ask “In the month before you were pregnant...” the question again loses validity. But if you ask “In the month before you knew you were pregnant...” that’s normalizing, making it more likely that you will get an accurate response: “Heck yeah, everybody drinks. But as soon as I knew I was pregnant I stopped drinking.”

CCPR: Should mental health providers ask these questions when evaluating a child?

Dr. Chasnoff: Use similar language: “How far along were you in your pregnancy when you found out you were pregnant?” Then ask “In the month before you knew you were pregnant, how much beer, wine, or liquor did you drink?”

CCPR: Should we quantify the amount of alcohol?

Dr. Chasnoff: Although the amount of alcohol the person was drinking before they knew they were pregnant is an important predictor of the child’s long-term outcome, your role is to decide whether FASD is in the differential diagnosis. If the person says “Oh, no, we were planning our pregnancy. I stopped using long before we conceived,” then you can relax.

CCPR: How does the 4Ps Plus© instrument work among cultural, racial, or socioeconomic groups?

Dr. Chasnoff: It’s validated with Black women, White non-Hispanic women, and Hispanic women, with some experience in Asian-American populations. The 4Ps Plus© is translated into five languages and used internationally. The rate of positive screens for substance use in general (not specific drugs or alcohol) is similar across socioeconomic, racial, and ethnic groups. One of our studies found higher rates of alcohol use during pregnancy among White non-Hispanic women and in places where there are more wineries (Chasnoff IJ et al. Perinatal Substance Use Screening in California: Screening and Assessment With the 4Ps Plus Screen for Substance Use in Pregnancy. Chicago, IL: NTI Upstream; 2008).

CCPR: Do you find bias in identifying FASD?

Dr. Chasnoff: Yes. In 1988, during the “war on drugs,” we studied urine samples in a middle-class community in Florida and found that 15% of the women at their first prenatal visit had a positive urine toxicology for any substances. The rate for Black women was 13.5% and the rate for White non-Hispanic women was around 15% (Chasnoff IJ et al, N Engl J Med 1990;322(17):1202–1206), so there was no statistically significant difference. But Black women were 10 times more likely to get a urine toxicology done during labor and delivery than White women, and the rate of removal of the babies because of the mother’s drug use was 10 times higher in Black women. In addition, more recent research shows that physicians tend to address drug use in pregnant patients but not alcohol use (Chasnoff IJ et al, Child Welfare 2018;96:41–58).

CCPR: Moving to clinical signs, what facial features should we look for in FASD?

Dr. Chasnoff: Except for FAS, very few children affected by prenatal alcohol exposure have the facial features because there is only a relatively brief period, from about four to eight weeks gestation, during which facial features are affected. The children who most commonly present to you have behavioral issues without facial features.

CCPR: Can you describe the neurocognitive and behavioral characteristics of FASD?

Dr. Chasnoff: The three domains to look at in FASD are neurocognition, self-regulation, and adaptive functioning. The most common deficits are in neurocognitive functioning, such as executive functioning and memory. Executive function is the ability to plan and complete a task, to sequence, to follow through; to understand cause and effect. A good screen for that is the Behavior Rating Inventory for Executive Functioning (www.tinyurl.com/2spuuw86); there is a fee to use it. It has an age range from 5–18 years old and a self-report version for ages 11–18, with parent and teacher forms too.

CCPR: What characteristic memory problems do these kids have?

Dr. Chasnoff: Children affected by prenatal alcohol exposure have trouble moving information from short-term into long-term memory. They also have difficulty with working memory—the ability to access information from long-term memory, such as a phone number, and hold it in the brain to use it.

CCPR: What are the problems with self-regulation?

Dr. Chasnoff: Self-regulation is the ability to regulate sensory experience, motor behaviors, and emotions. These children present with mood swings and are often easily overwhelmed by sensory or emotional experiences. This usually requires an occupational therapist to evaluate the child’s difficulties. (Editor’s note: For more information, see CCPR Oct/Nov/Dec 2022.)

CCPR: What are the problems with adaptive functioning?

Dr. Chasnoff: Adaptive functioning is the ability to take information you know and apply it to daily living skills, especially communication. This includes reading facial expressions and body language, understanding everything from sarcasm to money, interpreting bus schedules, etc. A person can be bright but have gaps in their executive functional abilities. We produced a documentary film (Moment to Moment) that tells the story of a young woman with an IQ of 125 attending college who can’t tell time.

CCPR: How do you assess adaptive function?

Dr. Chasnoff: Get psychological testing to measure IQ and adaptive quotient (AQ). For other developmental challenges, such as autism, IQ and AQ usually vary together. But for ARND, IQ can be high while AQ is low. Ask a psychologist who does formal testing to evaluate neurocognition, self-regulation, and adaptive functioning domains.

CCPR: How do you approach treatment with these patients and families?

Dr. Chasnoff: Evidence-based approaches generally include parent education or training, teaching children specific skills that other kids learn through observation or abstraction, and collaboration with school and other treatment providers (Chasnoff IJ et al, Child Welfare 2023;101(3):191–208). Four evidence-based treatment approaches for ARND are recognized by the federal government (www.cdc.gov/ncbddd/fasd/treatments.html). Ours is in Chicago, and others are at Emory University, University of Washington in Seattle, and UCLA. The state of California has named additional therapeutic approaches (www.tinyurl.com/yh6ua2vx).

CCPR: What is the role for medication in treatment of ARND?

Dr. Chasnoff: About 74% of children affected by prenatal alcohol exposure meet criteria for ADD/ADHD, but the treatment approach is different (Chasnoff IJ et al, J Dev Behav Pediatr 2010;31(3):192–201). In ADD/ADHD, we focus first on the prefrontal cortex, using stimulants that act on the dopamine receptor system. In FASD, the problems commonly impact the limbic system. Mela and colleagues have a treatment algorithm for medications in FASD that lays out typical kinds of medications for symptoms with mood, anxiety, mood stability, and ADHD (Mela M et al, J Popul Ther Clin Pharmacol 2020;27(3):e1–e13).

CCPR: What do you tell the child and parents about FASD?

Dr. Chasnoff: We created a comic book that parents can use with children starting around 8 years of age: Everybody’s Brain Is Different. It uses cute, engaging characters to talk about the changes that occur in the brain from prenatal alcohol exposure. It’s low-key and has a guide for parents on how to talk to their children. As patients reach adolescence, we want to preserve feelings of self-efficacy and self-esteem, and this approach remains helpful even into adulthood.

(Editor’s note: FASD United addresses shame to increase parental engagement in care. They advise that when talking with parents, clinicians should use the term “prenatal alcohol exposure” vs “maternal alcohol exposure.” They should also describe “the range of effects that occur when a developing baby is prenatally exposed to alcohol” vs saying “FASD is what happens when a mother drinks alcohol while she’s pregnant.” For more, see www.FASDUnited.org.)

CCPR: What does prognosis look like?

Dr. Chasnoff: Prognosis varies depending on cognitive functioning as well as other factors. But if you can identify the alcohol-exposed child and start treatment before age 6, you can significantly improve the child’s long-term developmental trajectory (www.cdc.gov/ncbddd/fasd/treatments.html). Early recognition and intervention are key. However, it’s never too late. The more the family can create a home environment that supports the child neurocognitively and behaviorally, the better the child’s going to do long term. It takes a dedicated family and health care system. I have patients who have done extremely well; however, they rarely get away from needing somebody to help them be organized. My latest book discusses the educational and behavioral interventions that can improve the outcome of children and teens with FASD and early trauma (Chasnoff IJ and Powell RJ. Guided Growth. Portland, OR: NTI Upstream; 2020).

CCPR: Thank you for your time, Dr. Chasnoff.