The Hidden Costs of Prenatal Alcohol Exposure

Imagine that the most common developmental disability in the U.S. could be prevented during pregnancy. We might expect to see loads of attention (and money) dedicated to the cause, and widespread support for taking action to prevent children from facing unnecessary challenges.

In the U.S. we find ourselves in this very situation of preventable disability, though it is not well-known and even less well-funded. Our most common source of developmental disability is fetal alcohol exposure, resulting in conditions under the umbrella of Fetal Alcohol Spectrum Disorders (or FASDs, which include Fetal Alcohol Syndrome and related conditions). Despite the issuance of warnings against alcohol use during pregnancy, it is not unusual for pregnant women in the U.S. to drink – and even binge drink—during crucial phases of child development in the womb (which are all of them). There are many reasons pregnant women drink alcohol, but most reasons are complex and do not involve intent to harm an unborn child. Instead, there seems to be a lack of clarity around the extent of harm that can be done combined with a lack of supports for women in crisis.

But does drinking when pregnant really lead to disability on a large scale? The largest prevalence study so far involved over 11,000 Gen Z first-graders across all four regions of the US in 2010-2016 (two sites in each region). With extensive evaluation of students and surveys of parents, the authors estimated rates of FASDs around 3%, with uncertainty bounds that suggest potential for much higher prevalence (and data limitations likely to understate prevalence). In some areas they studied, the prevalence was nearly 10 percent. (For context, the prevalence of autism among children in that same period is estimated at about 2 percent). But even these estimates don’t capture the varying concentrations of those with FASDs across differing contexts. For example, one Canadian assessment using a sample in a the correctional system estimated 20-30% of adults in the study had FASD (though only 15% of those diagnosed by the researchers had been formally diagnosed before). Sadly, for those who study the behavioral features of FASD or those raising a child with the disorder (like me), this is unsurprising.   

My son was adopted at birth, and has always been bright-eyed, smart, and full of energy. He had some trouble with sleep, always needed a pacifier, and was into everything—not unlike many babies. However, by pre-school, it was clear that, at minimum, he had a significant case of ADHD. This diagnosis helped, as did medication. But ADHD didn’t explain the arguing, meltdowns, opposition, and aggression that characterized our days, nor the fact that incentives didn’t work and consequences didn’t  seem to affect future behavior. Thankfully, our son’s birthmother courageously told us of his prenatal exposure as she learned of his struggles, and we were able to get an FASD diagnosis that has helped tremendously in understanding him and getting him supports.

Fetal alcohol spectrum disorders are lifelong disabilities caused by permanent brain injuries reflecting the teratogenic effects of prenatal alcohol exposure, with many symptoms that are easily confused with willful antisocial behavior. A child with an FASD generally struggles with executive function, which includes emotional regulation, organization, auditory processing, and memory. People with FASDs tend to be focused on themselves and the present moment, leading to impulsivity and trouble learning from consequences. They can be excessively argumentative when overwhelmed—and they are frequently overwhelmed. They have a “scattered profile,” meaning that their skills are inconsistent across domains and from one day to the next. A teenager with FASD may have social skills at the age of a 7-year-old, verbal skills of a 15-year-old, and the emotional regulation of a 3-year-old. When clinicians are not FASD-informed, common misdiagnoses are ADHD, autism, and oppositional defiant disorder—some of which have treatment that can be counterproductive for those with FASD. These challenges exhaust children and parents alike, as nothing seems to go smoothly despite everyone’s best efforts. Children with FASD don’t respond well to the normal demands of standard parenting, requiring instead that parents “reframe and accommodate” to help them gradually grow and succeed instead of kick against the goads. They often benefit from medication including stimulants and psychotropics; though there are no drugs explicitly designed to treat FASD, a treatment algorithm has recently been developed. 

Every person with FASD has strengths as well, of course; often individuals with FASD are verbally articulate and have remarkable artistic and creative skills. On their good days, they may not seem to be a person with a disability, which makes it all the harder to get them what they need the rest of the time.  Ultimately, as Canada’s advocacy organization CanFASD puts it, “each person with FASD will need special supports to help them succeed with many different parts of their daily lives.”

Given the substantial challenges of living with FASD, how is this disability so hidden? Based on my experience seeking help for my child, there are at least three key reasons. 

First, the diagnosis of FASD is complex, and the diagnostic capacity is a fraction of the size that would be needed to regularly identify cases. For example, in my state of New York, there are nearly 20 million people. If 3% of them had FASD, that would mean over half a million cases in the state.  We currently have two diagnostic clinics (in New York City and Rochester) that have the combined capacity to make about 200 diagnoses per year. These providers must do extensive, multi-specialty investigation of symptoms and, crucially, must have confirmed alcohol consumption by the mother in order to make the diagnosis. In the study of Gen Z first graders mentioned earlier, of the 222 students the researchers identified with FASD, only two had an existing diagnosis.

Second, there is stigma surrounding FASDs that reinforces its lack of acknowledgement both clinically and socially. Many providers are uncomfortable asking women about their alcohol use during pregnancy, and without careful design, most surveys get severe undercounts of maternal drinking. This sort of “don’t ask, don’t tell” means that there is little attempt to help identify potentially affected children (and it is rare that FASD can be diagnosed at birth in any case, so follow-up would be crucial). The other side of the coin, though, is that women who do admit to drinking while they are still pregnant may be subject to punitive consequences, depending on state policy, leading them to avoid prenatal care entirely.

This gets to policy challenges facing both prevention and supports for FASD, which is the third reason. We know that attempts at prevention through legislating alcohol use during pregnancy as child abuse or neglect make things worse for the mother and do not help the child. Offering treatment has a better chance of success, but requires buy-in that may not be there. Harm-reduction approaches are easier to swallow when they affect only the individuals using, but in cases of pregnancy, they may sacrifice a child’s future health in irreversible ways that tend to be left out of the narrative (such as this one at the NYT). The challenges of prevention are very real and require sensitivity—but this sensitivity can too easily turn to silence.

Supports for individuals with FASD and their families are few and far between. The services needed range from educational accommodations to mental health care, from occupational therapy to meds management, and from respite care to residential treatment. Despite these needs, medical education and social work education pay little attention to FASDs. Families must forge their own path, first to seek diagnosis, since this can at least connect them with specialized parent training and coaching and support groups. The diagnosis will not generally qualify the child for disability services in most states, so access to care can be limited by insurance coverage and the willingness of schools to qualify a student for special education. This heavy lift for parents is often done in a context where there are other complications (beyond the challenges and exhaustion of parenting). Many FASD-diagnosed children are in foster and adoptive families, who are already taking on added care responsibilities. What role does the state play to support them? Among families who have adopted out of foster care, some find themselves in a position to spend their life savings on needed residential treatment that is not covered by insurance (Wendy Kiyomi has written a remarkable reflection capturing this challenge). Others find themselves forced to disrupt a placement in order to force the state to take responsibility for the extensive medical and mental health needs of their FASD children. (Of course, birth families don't have this option.)

At the policy level, clinicians, families, and policymakers are pushing to improve both prevention and support: for example, the FASD Respect Act would improve funding for research, diagnosis, and treatment. There is also a role for family, friends, and community institutions in improving the lives of those affected by FASD. Teachers can show a willingness to become FASD-informed so as to provide a more therapeutic environment for children who struggle to meet typical expectations.  Families and faith communities can recognize that families managing tough behaviors are best served by encouragement and wraparound care rather than judgement and advice. And for churches (like mine) that explicitly encourage foster care and adoption, these challenges should be treated as the norm and not the exception, with families supported in tangible ways, such as babysitting. Finally, children with FASD grow up to be adults with FASD, so they will need a caring community for the long haul. When school supports begin to fall away with age, and government supports fail to materialize, the strength of community supports beyond the family may be the most important asset these vulnerable adults have for making their way in the world.

Sarah Hamersma is Associate Professor of Public Administration and International Affairs at Syracuse University, where she is a Senior Research Associate with the Center for Policy Research.