Stress and alcohol use often go hand in hand, a concerning pattern on the heels of the Covid-19 pandemic. Researchers have found that alcohol use increased sharply during the pandemic, and there is some evidence that those patterns were present among pregnant women as well, said Ira Chasnoff, MD, a pediatrician and fetal alcohol spectrum disorder (FASD) researcher at the University of Illinois College of Medicine in Chicago. Experts worry that the trend could result in more babies being born with damage from prenatal alcohol exposure.
Even before the pandemic, FASD was a significant problem. Experts estimate that 2% to 5% of U.S. schoolchildren—as many as 1 in 20—may be affected by prenatal alcohol exposure, which can cause complications with growth, behavior, and learning. The effects on individuals and families, as well as the economic costs, are substantial.
Yet support for FASD research and services is limited. The National Institute on Alcohol Abuse and Alcoholism funds innovative research on FASD, said Christie Petrenko, PhD, a clinical psychologist and research associate professor at Mt. Hope Family Center, University of Rochester, and codirector of the FASD Diagnostic and Evaluation Clinic there. But a Substance Abuse and Mental Health Services Administration (SAMHSA)–funded FASD Center for Excellence program was shuttered in 2016, leaving a big gap between the research being done and practical solutions for children and families affected by FASD, she said. Now, there’s a bipartisan bill before Congress, the FASD Respect Act, which would support FASD research, surveillance, and activities related to diagnosis, prevention, and treatment. (APA has endorsed this bill.)
Such attention is sorely needed, and psychologists have a significant role to play in diagnosis, prevention, and treatment, Petrenko said. “Families are desperate for support.” Yet many people with FASD haven’t even received an accurate diagnosis, let alone appropriate treatments.
Clinicians should be aware that FASD often overlaps with mental health symptoms. These problems begin in early childhood and exist through adulthood, as described by Mary O’Connor, PhD, ABPP, founder of the UCLA Fetal Alcohol Spectrum Disorders Clinic (Current Developmental Disorders Reports, Vol. 1, No. 1, 2014opens in new window). Her research has also found a higher incidence of suicidal ideation and behavior in adolescents with FASD (Birth Defects Research, Vol. 111, No. 12, 2019opens in new window). And many adults with FASD who have mental health disorders aren’t getting treatment, said Susan Stoner, PhD, a research associate professor at the University of Washington School of Medicine and director of the Washington State Parent-Child Assistance Program, a program for pregnant and parenting women with substance use disorders (Alcoholism: Clinical and Experimental Research, Vol. 46, No. 2, 2022opens in new window). “We found those with less severe FASD tend to have worse mental health than those with more severe FASD, which might be because those with more severe FASD are more likely to have a diagnosis and more likely to get support,” she said.
Understanding FASD
Many variables determine whether an infant will be born with FASD and how severe the disorder will be. Such factors include how much a pregnant person drinks, the rate at which they metabolize alcohol, and the stage of fetal development during alcohol exposure. “There are too many variables at play to estimate a safe level of drinking during pregnancy,” Stoner said. “The safest amount of alcohol during pregnancy is zero.”
Prenatal alcohol exposure can result in several conditions that fall under the FASD umbrella. These include fetal alcohol syndrome (FAS) and partial FAS, both of which can cause growth problems, central nervous system problems, and characteristic facial features (including small eye openings, flattening of the ridge between the nose and lip, and a thin upper lip), in addition to problems with learning and behavior. People with alcohol-related neurodevelopmental disorder (ARND) don’t have the characteristic facial features or growth deficiency of FAS, but they may have wide-ranging neurocognitive disabilities and problems with behavior and learning. These diagnoses overlap with a newer term—neurobehavioral disorder associated with prenatal alcohol exposure (ND-PAE)—a classification first included in the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) as a condition requiring further study (Kable, J. A., et al., Child Psychiatry & Human Development, Vol. 47, No. 2, 2016opens in new window).
Each of the disorders in the fetal alcohol spectrum can cause problems with self-regulation, executive functioning, social skills, and math skills. These deficits often interfere with children’s performance in school and their ability to make friends. Yet while FASD often causes learning difficulties, the symptoms can be unpredictable. “FASD is the most common preventable cause of intellectual disability in the world. But the majority of alcohol-exposed children have a normal IQ,” Chasnoff said. One notable feature of FASD is a gap between intelligence and adaptive functioning, he added. One of his teen patients, for example, has above average intelligence but is unable to read clocks or count money. “In children affected by alcohol exposure, adaptive functioning is significantly lower than IQ,” he said.
Behavioral problems associated with FASD are common, and often misunderstood, said Petrenko. “So many of the symptoms of FASD can look like intentionally willful or oppositional behavior, when really there are underlying neurodevelopmental explanations,” she said. An accurate diagnosis is the first step toward putting supports in place to address those neurodevelopmental challenges and help people with FASD thrive.
Diagnosis and treatment of FASD
The gold standard for FASD diagnosis is a multidisciplinary evaluation looking at physical features, neurobehavioral impairments, and any known history of prenatal alcohol exposure. The assessment typically involves a variety of specialists such as physicians, speech/language pathologists, psychologists, and geneticists. But those comprehensive evaluations are hard to come by. “There are very few FASD clinics that provide full-service diagnosis,” O’Connor said. “It’s estimated that about only 1% of people with prenatal alcohol exposure can get a diagnosis in that type of situation.”
As a result, many children with FASD are falling through the cracks. Chasnoff and colleagues collected data from 547 foster and adopted children and found that within this group 86.5% of youth with FASD had never been diagnosed or had been misdiagnosed (Pediatrics, Vol. 135, No. 2, 2015opens in new window). “The great majority of children that are affected by alcohol are misdiagnosed and taking inappropriate medications or receiving ineffective therapy,” Chasnoff said. “FASD should be in the differential diagnosis for any child who presents with behavior problems. And while no single discipline can diagnose FASD, psychologists have a major role to play in the diagnosis.”
Psychologists are also instrumental in designing treatments for children with FASD. To date, only a handful of evidence-based interventions have been developed, each targeting different aspects of FASD. Parents and Children Together (PACT), developed by Chasnoff and colleagues, is a 12-week family intervention that works with children ages 6 to 12 years old and their parents or caregivers to improve self-regulation and executive function. PACT builds on techniques learned from treating traumatic brain injury and sensory processing disorders. The research has found that the intervention improves executive functioning and emotional problem-solving in children with FAS and ARND (Wells, A. M., et al., American Journal of Occupational Therapy, Vol. 66, No. 1, 2012opens in new window).
The Math Interactive Learning Experience (MILE) program, developed by clinical psychologist Claire Coles, PhD, at Emory University, is a tutoring intervention designed to improve math knowledge and skills, a common area of struggle for children with FASD. A study showed that the 6-week intervention improved both math skills and behavior in alcohol-affected children ages 3 to 10 (Journal of Developmental & Behavioral Pediatrics, Vol. 30, No. 1, 2009opens in new window).
Children with FASD often have trouble learning social skills as well. The Good Buddies program, developed by O’Connor and colleagues, is designed to teach those skills in a group format over 12 weeks to children ages 6 to 12. The program is derived from an evidence-based treatment for improving children’s friendships, adapted for the specific behavioral and cognitive deficits common in children with FASD (Laugeson, E. A., et al., Child and Family Behavior Therapy, Vol. 29, No. 3, 2007opens in new window).
The Families Moving Forward Program, created by Heather Carmichael Olson, PhD, and colleagues at Seattle Children’s Research Institute, provides support for families of children with FASD and significant behavioral challenges. The program targets caregivers rather than children themselves and typically lasts about 9 months, in person or by telehealth. Studies have shown the efficacy of the program (Bertrand, J., Research in Developmental Disabilities, Vol. 30, No. 5, 2009opens in new window), which is now used in multiple states and Canada. Petrenko is collaborating with Olson and colleagues to develop a mobile app, Families Moving Forward (FMF) Connect, to help more families access resources and support (JMIR Formative Research, Vol. 5, No. 12, 2021opens in new window). The researchers are also adapting the program for children from birth to age 3.
With the right tools, children and adults with FASD can lead successful lives. “The biggest thing we’ve learned is the idea of reframing—looking at behavioral symptoms in a new way,” Petrenko said. Instead of treating a child as oppositional, for instance, reframing helps providers and parents understand that the child may be unable to do what they’re asked because of working memory deficits or other cognitive impairments. “By reframing these interpretations, you can put supports in place to help people be more successful,” she said.
Preventing FASD, attacking stigma
Efforts are also underway to prevent babies from being born with FASD. The Centers for Disease Control and Prevention promotes two strategies to reduce alcohol-exposed pregnancies. Choices is an evidence-based program that helps women make decisions around drinking and contraception (Floyd, R. L., et al., American Journal of Preventive Medicine, Vol. 32, No. 1, 2007opens in new window). The other strategy, alcohol screening and brief intervention (SBI), is a preventive service that involves screening questions about drinking patterns, a short conversation with patients who drink more than recommended amounts, and referral to treatment when appropriate (Planning and Implementing Screening and Brief Intervention for Risky Alcohol Use [PDF, 2.11MB]opens in new window, Centers for Disease Control and Prevention, 2014). “These interventions could easily be incorporated as part of a psychologist’s practice,” O’Connor said. (See more on brief screening interventions.)
Other efforts are underway to reduce the number of children born with FASD. Stoner directs the Washington State Parent-Child Assistance Program (PCAP), a 3-year intensive case management program for mothers who have used alcohol or drugs during pregnancy. PCAP works with pregnant women to stop drinking and also continues to provide support after they give birth. The program connects mothers to social and health services to reduce the likelihood that their future children will be exposed to alcohol or drugs prenatally by reducing substance use or deferring pregnancy. PCAP has 15 sites in Washington covering 19 counties and 90% of the state population, Stoner said. While the program has had success, it was developed several decades ago, and its wide dissemination across the state makes it difficult to do a modern trial to evaluate its effectiveness. To develop that evidence base, Stoner and colleagues have launched a randomized controlled trial in Oklahoma, where they will compare outcomes for women in PCAP with those who receive services as usual.
While education and awareness of FASD have increased among physicians and mental health providers, many are still reluctant to speak with pregnant women about substance use, O’Connor said. Clinical psychologists can and should raise the topic with women in their care who are or might become pregnant. “Prevention can begin in the therapy room,” Stoner said. But it’s important to ask a woman about pregnancy and substance use in ways that encourage honesty and reduce stigma, O’Connor added. “So, for example, instead of asking, ‘Did you drink during pregnancy?’, it’s better to ask, ‘How often did you drink before you found out you were pregnant? And how much did you drink after?’” she said.
While careful conversation can help, stigma continues to be a challenge. Discomfort around the subject often prevents medical providers from asking women about alcohol use during pregnancy at all. Stigma also prevents women from seeking help for alcohol dependence and may prevent them from pursuing a FASD diagnosis for their child. Addressing negative perceptions about alcohol use during pregnancy is an important step toward reducing rates of FASD and improving lives for people with these conditions, Petrenko said. “People with FASD and their families are capable. They can thrive if we recognize their strengths and provide appropriate services and supports.”
