Joel Sheagren knew when he adopted his son that the birth mother had consumed alcohol while pregnant. But the boy, Sam, wasn’t born with any obvious signs of developmental damage, so Joel wasn’t worried about it. Two years later, he and his wife adopted a daughter from the same mother.
Both children had been exposed to alcohol in utero, but as they got older, only Sam seemed to have trouble learning or following directions. Now a teenager, Sam has difficulty remembering what he was told a day before and understanding sequences of events. He’s a talented soccer player, explains Joel, but he needs to be reminded regularly about what may need to happen between the moment he passes the ball and the moment his team scores a goal.
When Sam was a teenager, Joel took him to a fetal alcohol spectrum disorder diagnostic clinic in Minnesota. “It wasn't until 14 years into our son’s life that we really started to connect the dots,” that the prenatal exposure to alcohol affected his development and behavior, says Sheagren, a filmmaker in Minnesota. He was surprised. “This is such a prevalent issue,” he says. “How come I didn’t know?”
Studies have estimated that fetal alcohol spectrum disorders, or FASD, affect between one and 5 percent of the population, though experts suspect the prevalence is even higher. In addition to every-day challenges, many of these individuals are at risk of becoming tangled in the criminal justice system as both victims and offenders. Jerrod Brown, a researcher specializing in behavioral health and criminal justice at Concordia University in St. Paul, Minnesota, says that difficulty with communication, a propensity toward false confessions, and trouble maintaining schedules set by probation officers are stories he hears “over and over again.”
Part of the challenge is that diagnosis is arduous. Those with suspected disorders must visit a specialized clinic—which may require hours of travel—and undergo a day’s worth of testing that includes in-depth assessments of learning and cognition crucial to tailoring treatments and support for individual patients. In many cases, the clinic only has the capacity to evaluate individuals whose families can confirm that they were exposed to alcohol in utero.
That’s why Susan Shepard Carlson, a former district court judge and first lady of Minnesota, is advocating for a bill called the FASD Respect Act that will provide resources at the national level for screening, research, and other support services. In 1997 she realized that a lot of the kids coming through the courts “had the same kind of profile [as] someone with FASD—learning problems and behavior problems—but we weren’t really looking at the underlying cause.” At the time, only external traumatic brain injuries were taken into consideration when making decisions about these cases. Carlson convened a task force and hosted public hearings, which led to the state funding FASD research and treatment. The court was able to screen children suspected of having an undiagnosed FASD, and she says about 25 percent of the kids they chose to screen did have an undiagnosed disorder.
Putting a national spotlight on this issue is about more than criminal justice, though. Added support for research and treatment options can change outcomes for families like the Sheagren’s. Since making the connection between FASD and Sam’s behavior, Joel has attended specialized trainings with Brown about how to communicate with and support his son, and he says they’ve made a world of difference.
“It’s really important to know that we can still have dramatic differences in the developmental outcome of these children, if we get them recognized, and get them services as early as possible,” says Julie Kable, a neurodevelopmental exposure researcher at Emory University in Georgia.
A recent rethink on alcohol
Decades ago, alcohol was thought to be safe to consume during pregnancy. But in the early 1970s researchers found a pattern: babies born to mothers with severe alcohol use disorders often developed hallmark facial features such as a smooth upper lip, a small head, and a flat nasal bridge. These features were generally accompanied by a variety of lifelong mental and physical challenges such as learning disabilities, difficulty reasoning, growth deficiencies, and heart and kidney problems.
Since then scientists have found that prenatal alcohol exposure can disrupt the development of the brain and body even without affecting the face. Diagnosis requires complex tests and treatments that, due to limited resources and awareness, many patients never get.
Today the term fetal alcohol spectrum disorders describes a range of conditions from immune dysregulation to attention deficit disorders linked to prenatal exposure to alcohol. But the exact symptoms are often inconsistent from one patient to another. For example, while both of his adopted children were exposed to alcohol in the womb, Joel says his daughter hasn’t experienced the same developmental issues as his son.
“Alcohol affects the brain in different ways, depending on when the brain is exposed in pregnancy and how much it's exposed, and what else is going on, like nutritional factors, genetic factors, other things about the mom and the fetus,” says Jeffrey Wozniak, a neurobehavioral development researcher at the University of Minnesota. “So there's a lot of variety in terms of the brain effects.”
What alcohol exposure in the womb does to the brain
While impacts on the face, immune system, hormone signaling, and cognition vary, there are some anatomical characteristics that scientists tend to find more often in the brains of people who were exposed to alcohol prenatally.
First, explains Wozniak, their brains tend to be smaller overall. “We consistently see that in almost every study that we do,” he says.
Another common characteristic relates to the corpus callosum, a thick band of neurons that runs from the front of the brain to the back, connecting the right and left hemispheres. “It’s coordinating everything between the two halves of the brain,” says Wozniak. In people who were prenatally exposed to alcohol, this band tends be underdeveloped. And according to Kable, that in turn can have impacts on a variety of complex skill sets.
Many children and adults with FASD need more time than the average person to process information. For example, Joel explains that if he asks his son to wash the dishes, Sam is not being disrespectful if he waits five minutes to get started. His brain is just working to process what Joel has asked of him, and then switching from focusing on his current task (such as playing a video game) to washing the dishes.
And in 2011, Wozniak and his team published a study based on brain scans to examine neural activity between the two hemispheres. They demonstrated that the activity of the two hemispheres is less coordinated in patients with FASD, leading to deficits in hand-eye coordination, verbal learning, and executive functions.
Memory is also disrupted. Teachers often notice students’ memory challenges, even if they don’t identify the issue as being related to prenatal alcohol exposure. Sam “can take the knowledge in,” says Joel. But “the next day he doesn’t remember what [the teacher] told him anymore and certainly doesn’t know how to apply it.”
Deep in the center of the brain sits a small, seahorse-shaped region responsible for consolidating memories, called the hippocampus. The effects of prenatal alcohol exposure on this area are “pretty profound” says Wozniak, with the hippocampus having cells that are smaller and disorganized.
A brain region called the prefrontal lobe can also show abnormalities in FASD patients. “It’s an area of the brain that’s involved in planning and organization and reasoning and judgement,” explains Kable. Her team has found that in animal models exposed to alcohol in utero, the system of blood vessels and veins carrying oxygenated blood around this area of the brain can be disorganized.
This suggests that people with FASD have “more forks in the road, so that rather than a nice smooth pattern of being able to deliver oxygen to the areas, you’re [delivering oxygen] in a disorganized way,” Kable says. One result of this is a difficulty replenishing oxygen in areas of the brain that help people cope with frustration.
A difficult diagnosis
Despite having identified these and many other brain characteristics common to FASD, doctors say brain scans currently can’t diagnose prenatal alcohol exposure because every case is so different. More often than not, FASD goes unrecognized.
In the early 2000s Concordia University’s Brown was working at an adult counseling center in St. Paul, Minnesota. Patients kept coming in with what seemed to be unbelievably long lists of diagnoses. “It was like every time they went to a new provider, they had a new diagnosis,” he says. Eventually, he noticed a trend: Many of the patients believed that their biological mothers may have consumed alcohol or used other drugs while they were pregnant.
For many years, doctors rarely asked pregnant people or families about their drinking habits. “I think doctors are afraid to ask sometimes because they don't feel confident in what to do if the answer is yes,” says Christie Petrenko, a FASD specialist at the Mt. Hope Family Center in Rochester, New York.
In the early 2000s, however, studies started to show that targeted therapies could help people who were prenatally exposed to alcohol. For example, Kable says that working with the Centers for Disease Control and Prevention (CDC), she and her team found that offering adaptive support helped people with FASD better learn and understand math, a subject that requires strong working memory and that is commonly challenging for those with FASD. One very simple switch is presenting number lines vertically rather than horizontally.
“It sounds silly, but a vertical number line is sort of automatic. If you add numbers, go up, and if you subtract numbers, go down,” says Kable. The team also provided tools that helped the individuals count and keep track of numbers to mitigate short-term memory glitches.
Researchers have developed similar programs to help with executive function and decision making. “No longer could we allow pediatricians to say, Well, why should I diagnose it when there's nothing we can do about it?” says Kable.
Yet there are currently too few diagnostic centers in the U.S., and some states don’t even have a single FASD diagnostic center. Since diagnosis requires comprehensive evaluations, the centers that do exist have limited capacity to complete them. Many will only see patients who they know were very likely to have been exposed to alcohol in utero, which accounts for a fraction of those believed to be affected.
The assessments are also very expensive, and “they take like almost a full day to do, and so we try to prioritize that high resource for people who we are pretty sure we're going to be able to diagnose,” says Petrenko, whose clinic is the only one in upstate New York. She emphasizes that for children who may need a less intensive evaluation, the clinic does provide single-provider visits, in which children can get a briefer assessment of strengths and weaknesses and be referred for a more in-depth evaluation if necessary.
While most experts agree on the basic characteristics of FASD, there are also minor differences in diagnostic criteria between states, countries, and clinics, with slightly different cutoffs. A child who scores one-and-a-half standard deviations below the norm on a certain learning test might be diagnosed in one clinic, whereas another requires them to score two standard deviations below the norm. That means each specialist might “pick up somewhat different kids depending on how strict or relaxed certain criteria are,” says Petrenko.
This can create challenges for researchers working to build large data sets, but it also has more immediate impacts. For example, Petrenko says individuals with FASD in some states, like New York, don’t qualify for disability services because the state points out that the CDC only has consistent diagnostic criteria for fetal alcohol syndrome, not the whole spectrum of disorders.
Outreach and awareness have also suffered, though Carlson hopes to change that with the FASD Respect Act, which currently has nearly 50 sponsors in the House. Sheagren says he was shocked by how little he knew about the ways alcohol could affect fetal development. He’s now working on a documentary film about the effects of prenatal alcohol exposure. “This is such a prevalent issue without any supports and without [enough] awareness,” he says. “It's just a bizarre situation.”