CHICAGO — The agitated mom had three kids in foster care and she wanted them back. But she didn’t understand how to parent. She’d never worked. She had a short fuse. She was slow and didn’t seem to learn from experience.
Dr. Carl Bell studied the young woman. Flat cheeks. Thin upper lip. Folds at the corner of her eyes. It hit him like a thunderbolt: She had subtle features of fetal alcohol syndrome.
Bell had seen thousands of patients like this over the past 40 years and been baffled by their explosive tempers, poor social skills, spotty memories, trouble communicating, and learning disabilities.
Now, this psychiatrist realized their behavior might be explained by exposure to alcohol in the womb.
Bell had stumbled on a hidden epidemic of brain damage, concealed by shame and stigma, which affects up to 5 percent of Americans — and in poor communities, possibly far more.
The victims are often misdiagnosed with psychiatric disorders or antisocial tendencies. As kids, they’re stuck in special education classes. As adults, they often end up homeless or in jail. They’re deemed unruly, uncompliant, out of control.
Instead, they may have fetal alcohol spectrum disorder, or FASD.
“No one realizes how common it actually is,” said Bell, 68, who is nationally known for his work exploring the impact of trauma on children in disadvantaged neighborhoods.
His jolt of recognition in 2012 came as other researchers around the country were beginning to look much more closely at fetal alcohol spectrum disorder. The most recent version of the Diagnostic and Statistical Manual of Mental Disorders, published in 2013, includes it for the first time as a condition that needs further exploration.
Today, FASD is widely recognized as the largest preventable cause of birth defects and developmental disabilities in the US.
‘I’ve never been so stunned in my life’
In 2014, a team of researchers led by Philip May of the University of North Carolina at Chapel Hill published a seminal paper showing that 2 to 5 percent of first-graders in a largely white, largely middle-class Midwestern city had fetal alcohol spectrum disorder.
At the far end of that spectrum lies fetal alcohol syndrome, identified in 1973. Children affected have intellectual disabilities, small heads, stunted growth, and unusual, characteristic facial features: small eyes, a thin upper lip, and a smooth area between the nose and that lip known as the philtrum.
Other people on the spectrum lack these distinctive physical features but are troubled by poor judgment, difficulty planning, impulsivity, and distractibility. They’re often behind in speech and language skills, and have trouble performing tasks in a sequence.
May’s report hit a nerve: Previous estimates of the prevalence of FASD had been much lower. But his calculations may still underestimate the problem. Two new reports, yet to be published, will show that fetal alcohol disorders are more common than May calculated, according to Julie Kable, an assistant professor of psychiatry at Emory University who studies FASD.
Bell suspected the numbers would be higher still in poor, tough, neighborhoods where liquor stores can be found on every other block.
So he conducted a formal study of 611 of his psychiatric patients on Chicago’s South Side. Nearly 40 percent had FASD.
It wasn’t a representative sample of the population, and Bell wasn’t administering sophisticated diagnostic tests, but the results were eye-opening.
“No one had looked at the prevalence of FASD in low-income African American communities before,” Bell said. “I’ve never been so stunned in my life.”
At another Chicago clinic, Dr. Ira Chasnoff, a pediatrician, was testing kids and teens who’d been adopted or were in foster care and having serious behavioral problems. His examinations were more comprehensive, involving a thorough assessment of intelligence, executive functioning, speech and language, sensory processing, and social skills, among other factors. They involved a team of professionals and took a full day or more to complete.
Chasnoff’s findings, published last year: Nearly 30 percent of these youngsters had fetal alcohol spectrum disorders. Eighty percent had not received a diagnosis of this kind previously.
Such studies, along with others across the country, are bringing fresh attention to the impact of exposure to alcohol in utero.
Bell “excels at changing the way people think,” said Gene Griffin, a retired professor of psychiatry at Northwestern University’s medical school.
There’s no question that the young African-Americans that Bell is trying to call attention to are engaging in high-risk behaviors, Griffin continued. The question is, how do we explain that — and how do we respond? Are the kids bad? Traumatized? Mentally ill? Marked by adverse environments? Or do we trace their behavior to their exposure, in utero, to alcohol?
“All of these are possible ways of looking at the same data,” Griffin said. By highlighting the brain damage caused by alcohol, Griffin said, Bell is “trying to get us to see these behaviors through a different lens.”
‘I want him to be able to fend for himself’
Susan Earl is still coming to terms with the partying she did in her mid-20s, before she became a mother.
Back then, she used to spend most weekends at clubs with friends. She usually had a few drinks. Her boyfriend at the time encouraged her because it loosened her up.
She was about six weeks into a pregnancy when she learned she was expecting. “I stopped drinking as soon as I found out,” Earl said.
It wasn’t soon enough.
Quinton Mills, her son, born four weeks early, had the characteristic facial features of fetal alcohol syndrome. His speech was delayed, and in kindergarten he started biting, kicking, and screaming. He was bullied by classmates. He wet his bed until he was 12.
Now 14 years old, an eighth-grader, and a patient of Bell’s, Quinton is in special education, doing work at the second- or third-grade level.
“His thinking skills, they’re not that good,” Earl said on a recent morning at her home in Calumet City, south of Chicago. “If you tell him to take out the trash, he won’t remember a minute later. I don’t know if his mind goes off or what.”
Arriving home from school, the boy mumbled brief answers to his parents’ questions.
“How was class today?”
“Did you have fun?”
As Quinton went back to his room, his stepfather, Nathaniel Earl, became pensive. “I want him to be able to fend for himself,” he said. “But if you ask him who is the president or what is going on [in the world], he can’t tell you. I worry about that.”
A warning to young women backfires
Earlier this year, the Centers for Disease Control and Prevention advised all sexually active women of childbearing age to abstain from all alcohol unless they’re using contraception.
The warning was aimed at the more than 3 million women in the US at risk of bearing children with FASD. But it was widely ridiculed. Women called it condescending.
That backlash points to the difficulty of preventing FASD.
Doctors and therapists, including those who deal with children’s learning disabilities and behavioral problems, are extremely reluctant to inquire whether a mom drank while pregnant.
“I can’t tell you how many providers don’t want to ask: There’s so much stigma attached to identifying women who are drinking,” said Kable, the Emory University psychiatrist. “Alcohol is so pervasive in our culture. But no one wants to talk about it.”
Even when physicians do ask, it can be hard to get accurate information. Some women think having a beer or a few glasses of wine a couple of times a week — social drinking, not heavy drinking — doesn’t count. Others think that if they stop drinking when they find out they’re pregnant, they’re in the clear. Others simply deny having had any alcohol.
Officially, the CDC estimates that about 10 percent of women in the US drink during pregnancy. Other research, cited by Chasnoff, suggests that figure may be as high as 20 to 35 percent.
Conveying the risk of fetal alcohol exposure is difficult, because not every woman who drinks during pregnancy will have a child who is affected. It depends on how much alcohol she consumes at various times during her pregnancy as well as her stress level, her nutrition, how she metabolizes alcohol, and her baby’s genetic susceptibility, among other factors.
But the research is clear: No amount of alcohol can be guaranteed to be safe, even in a pregnancy’s very early stages.
As soon as three weeks after conception, before most women realize they’re pregnant, binge drinking (defined as four to five drinks on a single occasion) can cause the kind of brain damage that underlies the symptoms of FASD.
The more women continue to drink, the greater the risks to a fetus. Studies indicate that alcohol exposure alters the brain’s wiring, disrupts brain connections, and leads to brain cell death, causing permanent injury that interferes with normal development.
Even one drink a week during pregnancy can lead to a child with deficits in thinking, judgment, and self-control, reflected in a tendency toward to lash out, throw tantrums, and ignore rules, according to a 2001 study published in Pediatrics.
It’s not that these children won’t listen to their parents or teachers. It’s that they can’t process what they’re hearing and translate it into action. Their brains are impaired.
“For the most part, the root cause of these children’s problems goes unrecognized, and children end up being blamed for behaviors that are really biologically based, over which they have no control,” Chasnoff said.
Aggressive interventions at an early age can help kids with FASD learn how to regulate their emotions, break activities down into steps, and think through problems. “You have to raise these kids differently than other children,” Bell said.
But that’s especially hard to do in disadvantaged communities where professional help is scarce and getting along day-to-day is so difficult.
Without intervention, kids with FASD often get diagnosed with mental illness and put on psychiatric drugs at a very young age. Or they’re offered interventions at school that don’t address the full range of their deficits. Or they never learn how to control themselves, and when they grow up find themselves in a world of trouble.
Ora Jackson won’t forget the day she took custody of Treshawn Jones. He was two months old and bawling nonstop. Frantic, a teenager who had been taking care of him walked into Jackson’s house and handed him over.
“She gave him to me and ran out the door,” Jackson remembered recently, in her home in a tough South Side neighborhood. “I put him on the bed, and I saw that he wasn’t a bad baby. She just didn’t know what to do with him.”
Jackson, 56, who never had children of her own, loved Treshawn and raised him as her son. But it hasn’t been easy. His mother, Jackson’s great niece, had been living on the streets, drinking and doing drugs throughout her pregnancy.
“I started noticing when he was 3 that something wasn’t right,” Jackson said. “He’d have tantrums like I’d never seen before. I took him to a doctor and they told me he was an overactive child. But I was like, no, I know something is wrong, not just that.”
In kindergarten, Treshawn would get into fights and ignore his teacher. Jackson marched him over to Jackson Park Hospital, where a pediatrician recommended that he start seeing a counselor — treatments that continue, weekly, to this day.
Treshawn was diagnosed with attention deficit hyperactivity disorder and started taking Ritalin, which helped a bit. But still, he couldn’t tie his shoes. He mumbled when people asked him to speak clearly. And he kept on having problems in school.
Jackson pulled out her phone and showed a text Treshawn’s teacher had sent the week before: “He’s in rare form today fighting and cussing and everything else will not be quiet in class.” And another: “Acting up again won’t shut up stop talking and focus.”
Two years ago, Jackson took Treshawn back to Jackson Park Hospital, where he was evaluated by Bell. “He cannot sit still, he has a bad temper … [but] this is a nice kid,” the psychiatrist wrote in his initial case report. Treshawn, he wrote, had “a clear history of fetal alcohol exposure.”
Bell’s advice: give the boy vitamin A, folate, omega-3, and choline, a nutrient that plays a role in brain development. Animal studies, and studies of young children with FASD, suggest it might ameliorate some of the brain damage from fetal alcohol exposure.
But there’s no solid evidence that choline can help older children or adults.
“In general, we think that choline helps early on in development, but we’re a lot less clear about later,” said Jeffrey Wozniak, an associate professor of psychiatry and codirector of the FASD program at the University of Minnesota. “It’s too early to even say this is a treatment.”
That doesn’t faze Bell, who likes to be ahead of the curve. “I don’t care, because I’m a clinician and as a clinician I get to do what makes sense to me,” he said. “Academics, they can afford to be purists trying to count the hairs on a gnat’s ass.”
An ‘extraordinarily sneaky’ foe
On a recent morning, Bell strode through the psychiatric ward at Jackson Park Hospital, wearing a green lab coat, black sneakers, and a black baseball cap — part of an extensive collection of hats.
“FASD is extraordinarily sneaky and covert,” he said, before entering a patient’s room.
His diagnostic approach relies on “triangulating” a person’s birth history (prematurity? heart murmur? low birthweight?); their educational history (special education? speech and language problems? explosive temper?); their cognitive skills (can they spell “world” backward and count down from 100 by 7s?); and whatever he can learn about the family background and propensity to drink.
“I sometimes learn the father is an alcoholic, and that’s important because if he’s a drinker, chances are he’s going to influence her to drink,” Bell said.
Outside of his clinic duties, Bell is trying to spread the message about FASD wherever he can. Recently, he gave a talk about it at Meharry Medical College in Nashville, his alma mater. A few weeks later, he traveled to Washington, D.C., to discuss it at a committee of the National Academy of Sciences.
Bell is also trying to convince the Cook County Juvenile Temporary Detention Center in Chicago to screen youngsters who’ve gotten into trouble with the law for FASD.
In the end, Bell hopes to show that African-American kids who are dropping out of school and ending up on the streets are there because of “social determinants of health” such as alcohol use. Perhaps, then, communities would see alcohol for what it is — a bigger problem than cocaine or heroin — and kids whose brains were damaged in utero would get treatment, instead of being labelled as deadbeats and failures.
But he’s not sure if people really want to hear his message.
“I’ve been told all my life that African-Americans are intellectually inferior,” Bell said. “I’m terrified of what I’ve found, because it might feed into this stigma” by suggesting that brain damage is more common in poor black communities than elsewhere, reinforcing painful stereotypes.
“But what it really says is that if we want social justice, we have to address the fetal alcohol problem.”
As an adult recently diagnosed with FASD can tell you that getting a diagnosis was the best thing I ever did . It is important to know The why’s!
I advocate for myself and others and would like to alleviate the stigma and aid others in getting services to help them succeed !
I’m the mother of a 26 year old that I believe has FASD. How did you get diagnosed? I live in VA and really want to find some help for my son.
Anyone with a psychiatric label slapped on him is misdiagnosed if you think that real diseases happen to real bodies, rather than to a fictional organ called “mind.” Behavior is not disease.
Since so much of FAS involves severe behavioral problems, parents take their children psychiatrists and/or psychologists. Now that FAS is in the DSMV, these professionals will finally be able to look up FAS as a possibility and not misdiagnose. Parents will also have a code for services and S.S.I. Next? Professionals need to learn the appropriate interventions.
Retired president of the Fetal Alcohol Support Network of NYC and L.I.
Why is this such a surprise?? Look at how alcoholism has drastically affected the health of Native Americans over the decades of deliberate excessive exposure…
My son was diagnosed with FAS, now FASD when he was 2. He is now 19 and is my grandson whom I adopted. So you can see FASD has been recognized for quite some time. While he doesn’t have all of the facial features, he has the behavioral ones. He also has co-occurring mental illness, so getting him the services he needs is a challenge. The bigger challenge will be where does he live when I can’t take care of him. It is important to educate women about drinking alcohol while pregnant, but it is more important to take care of the children and adults who are among us.
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