Fetal alcohol disorders are more common than you think

Summary

This PBS NewsHour report by Amna Nawaz explores fetal alcohol spectrum disorder (FASD), a condition caused by prenatal alcohol exposure that can lead to developmental and cognitive challenges. Doctors in Minnesota are studying its effects and diagnosing children like Moses, a 5-year-old who shows symptoms. FASD often goes undetected due to the lack of visible symptoms, but recent research shows it may affect more people than previously thought. Families and children with FASD face struggles, but early intervention and support groups offer hope for better outcomes.

Takeaways

• 🧠 Fetal Alcohol Spectrum Disorder (FASD) is often referred to as the 'invisible disability' because it lacks obvious physical symptoms and is underdiagnosed.
• 👶 Moses, a 5-year-old, shows symptoms of FASD, such as trouble with loud noises and intense emotional reactions, which led his family to seek a diagnosis.
• 👩‍⚕️ Dr. Judith Eckerle from the University of Minnesota Masonic Children's Hospital explains that children with FASD may have high IQs but struggle with impulse control and abstract reasoning.
• 📊 FASD is more common than previously thought, with an estimated 1.1 to 5 percent of the U.S. population affected, making it potentially more widespread than autism.
• 🔍 Many children with FASD go undiagnosed because symptoms are often subtle and not recognized by healthcare professionals.
• 🧠 MRI research by Dr. Jeffrey Wozniak shows that prenatal alcohol exposure causes brain abnormalities, particularly in areas responsible for attention, perception, and information processing.
• 🤔 FASD can be mistaken for ADHD, as both conditions share symptoms like hyperactivity and short attention spans, but their causes differ.
• 🧩 Children with FASD often struggle with abstract thinking, as illustrated by the example of Amelia Bedelia, who takes instructions literally without understanding their multiple meanings.
• 👥 Support groups and meetings, like those organized by the Minnesota Organization on Fetal Alcohol Syndrome, help children with FASD and their families cope with the challenges and find community support.
• 💔 Birth mothers like Carol Peterson, who drank alcohol before knowing they were pregnant, often experience guilt after their child is diagnosed with FASD, as seen with her daughter Kylene.

Q & A

What is fetal alcohol spectrum disorder (FASD)?

Fetal alcohol spectrum disorder (FASD) is a condition caused by prenatal alcohol exposure that can lead to a range of physical, cognitive, and behavioral problems in children. It is often referred to as an 'invisible disability' because it can be hard to diagnose without clear physical symptoms.

What are some of the challenges associated with diagnosing FASD?

Diagnosing FASD can be difficult because only the most severe cases show physical symptoms, such as distinct facial features. Most children with FASD have internal differences like brain damage, which is harder to detect. Additionally, many healthcare providers are not trained to recognize the signs of FASD, and the symptoms can overlap with other disorders like ADHD.

How does prenatal alcohol exposure affect a child's brain?

Prenatal alcohol exposure can cause brain damage, leading to cognitive and behavioral issues. MRI scans show that the brains of children with FASD are often smaller, with abnormalities in regions responsible for functions like attention, perception, and information processing. This can result in issues with impulse control, hyperactivity, and difficulties in abstract reasoning.

How common is FASD in the U.S. according to recent studies?

Recent studies suggest that FASD is far more common than previously thought, affecting between 1.1% and 5% of the U.S. population. This means FASD may be more common than autism, cutting across racial, ethnic, and socioeconomic lines.

Why do many children with FASD go undiagnosed?

Many children with FASD go undiagnosed because people often don't know what to look for, and symptoms can be mistaken for other disorders like ADHD. Additionally, children without visible physical symptoms may not be recognized as having FASD, leading to a lack of appropriate diagnosis and support.

What are some of the overlapping symptoms between FASD and ADHD?

Both FASD and ADHD share symptoms like hyperactivity, short attention spans, and impulse control issues. However, the underlying causes of these symptoms differ, with FASD being caused by prenatal alcohol exposure.

What kind of support do children with FASD and their families need?

Children with FASD often require early intervention to help manage symptoms. Support groups, like the one described in the script, offer a space for children to socialize with peers who have similar challenges, and for parents to connect and share strategies for managing their children's behavior. Family and community understanding are also crucial in reducing stigma and isolation.

What is the role of early intervention in managing FASD?

Early intervention can help mitigate the effects of FASD by providing targeted support for cognitive, social, and behavioral development. Though there is no cure for FASD, early diagnosis and intervention strategies can improve the quality of life for children affected by the disorder.

How do adoptive parents and birth mothers experience the FASD diagnosis differently?

For adoptive parents, an FASD diagnosis may be challenging but does not come with personal guilt, as they were not responsible for the prenatal alcohol exposure. In contrast, birth mothers may experience feelings of guilt and shame, especially if they consumed alcohol before knowing they were pregnant.

What are some of the emotional impacts on birth mothers whose children are diagnosed with FASD?

Birth mothers, like Carol Peterson in the script, often experience guilt and wonder if their alcohol consumption during pregnancy caused their child's developmental delays. This emotional burden can be heavy, especially when the child is diagnosed later in life.

Outlines

00:00

🤔 Understanding Fetal Alcohol Spectrum Disorder (FASD)

The introduction to fetal alcohol spectrum disorder (FASD), a condition caused by prenatal alcohol exposure, highlights its prevalence as an 'invisible disability.' The story is introduced by Amna Nawaz, reporting from Minnesota, and it is suggested that FASD may be more widespread than previously believed. We meet Moses, a 5-year-old with FASD symptoms, who was adopted. His father noticed behavioral challenges such as sensitivity to noise and heightened emotional responses. They visit a hospital to diagnose the condition, which could explain Moses' struggles.

05:02

🧠 FASD: Cognitive Challenges and Diagnosis

Dr. Judith Eckerle explains that FASD affects a range of cognitive abilities. Children may have high IQs but struggle with abstract reasoning and impulse control, while others experience significant intellectual disabilities. The University of Minnesota treats around 300 children with FASD annually, though it is believed that many more cases remain undiagnosed. A recent national study estimates that 1.1 to 5 percent of the U.S. population may be affected, potentially surpassing autism in prevalence.

🧪 The Diagnostic Challenges of FASD

Dr. Jeffrey Wozniak discusses the challenges of diagnosing FASD, noting that most cases are missed because symptoms are not always outwardly visible. Only the most severe cases display physical markers, such as smaller eyes or a thinner upper lip. His research uses MRI scans to reveal brain damage caused by prenatal alcohol exposure, showing how the brain's structure is altered, particularly in areas responsible for attention and perception. He explains that FASD symptoms often overlap with other conditions like ADHD.

📚 Explaining FASD through Concrete Examples

Dr. Eckerle uses the character Amelia Bedelia, who takes instructions literally, as a metaphor to explain how children with FASD often struggle with abstract concepts. She emphasizes that their difficulties go beyond surface-level symptoms, affecting their ability to reason in more complex or abstract ways. Nawaz then covers a support group for teenagers with FASD, where activities like slime-making are used to engage them while providing mentorship and guidance on navigating future challenges.

🤝 Support and Community for FASD Families

Families affected by FASD often experience isolation, as others may not understand the condition. Ruth Richardson, a program director in Minnesota, highlights the stigma many families face, sometimes avoiding public places like churches to escape judgment. However, support groups provide a space for parents and children to connect and share experiences. Parents, such as Dave Riege and Lisa Joy, value these meetings for both emotional support and practical advice on managing their children's struggles.

💡 Early Intervention and Hope for FASD

Despite there being no cure for FASD, early intervention can help alleviate symptoms and improve outcomes. Moses’ father, Brandon, expresses optimism about his son's future, stating that a diagnosis won't change his love for his child or the child's vibrant personality. For adoptive parents like Brandon, an FASD diagnosis comes without the guilt birth mothers often feel. Carol Peterson, a birth mother, shares her story of realizing her drinking during pregnancy impacted her daughter, Kylene, who was diagnosed with FASD at age six.

🎬 Looking Ahead: A Mother’s Guilt and Hopes for the Future

The final part of the report introduces Carol Peterson, a mother who quit drinking after learning she was pregnant but still fears that her earlier alcohol consumption contributed to her daughter's developmental delays. Kylene, now 27, was diagnosed with FASD at age six. Carol shares her guilt and concern, but also her hopes for her daughter's future. The segment concludes by noting that their full story will be featured in the following night’s report.

Keywords

💡Fetal Alcohol Spectrum Disorder (FASD)

FASD refers to a range of conditions that can occur in a child whose mother consumed alcohol during pregnancy. It can manifest as cognitive, behavioral, or physical impairments. In the video, it is the central issue being discussed, as many children like Moses, who was adopted, are suspected of having FASD due to prenatal alcohol exposure.

💡Prenatal Alcohol Exposure

This term refers to the consumption of alcohol by a pregnant woman, which can lead to developmental issues in the fetus. In the video, it's mentioned as the root cause of FASD. Moses’ birth mother is believed to have consumed alcohol during pregnancy, leading to his potential diagnosis.

💡Cognitive Impairment

Cognitive impairment refers to difficulties with thinking processes, including memory, attention, and reasoning. Children with FASD often have cognitive challenges, such as struggles with abstract reasoning or impulse control, as explained by Dr. Judith Eckerle in the video.

💡Impulse Control

Impulse control refers to the ability to resist sudden urges to act. It is often affected in children with FASD, as mentioned by Dr. Eckerle. These children may act without thinking, which is a symptom overlapping with conditions like ADHD.

💡Minnesota Organization on Fetal Alcohol Syndrome

This organization supports families dealing with FASD by providing resources and community support. In the video, it is shown as a sponsor of meetings for teenagers with FASD, providing a safe space where they can share experiences and connect.

💡Early Intervention

Early intervention refers to identifying and addressing developmental issues as soon as possible to mitigate future challenges. In the video, doctors emphasize the importance of early intervention for children like Moses, as it can significantly improve outcomes despite the lack of a cure for FASD.

💡Adoption

Adoption plays a key role in the narrative of the video, as many children with FASD, like Moses, are adopted. Adoptive parents like Brandon and Carol share their experiences of raising children with FASD, discussing the unique challenges and their commitment to helping their children thrive.

💡MRI Scans

Magnetic Resonance Imaging (MRI) is used to examine brain abnormalities caused by prenatal alcohol exposure. Dr. Jeffrey Wozniak’s research uses MRI to visualize brain damage in children with FASD, revealing abnormalities in areas related to attention and information processing.

💡Abstract Reasoning

Abstract reasoning is the ability to understand complex ideas that aren't tangible, such as concepts, patterns, or logical sequences. In the video, children with FASD struggle with abstract reasoning, as illustrated by Dr. Eckerle using the example of the fictional character Amelia Bedelia, who takes everything literally.

💡Social Stigma

Social stigma refers to the negative perceptions and judgments families and individuals face because of their association with a condition or disability. In the video, Ruth Richardson explains how families dealing with FASD often experience isolation and shame due to a lack of understanding in their communities.

Highlights

Fetal Alcohol Spectrum Disorder (FASD) is often called the invisible disability and can occur when a mother drinks alcohol during pregnancy.

FASD can cause a range of effects, including behavioral and intellectual difficulties, without visible physical symptoms in many cases.

Moses, a 5-year-old with behavioral challenges, is being evaluated for FASD at the University of Minnesota Masonic Children's Hospital.

Prenatal alcohol exposure affects more than 7,000 newborns each year in Minnesota alone, showing the scope of the issue.

A national study published in 'The Journal of the American Medical Association' shows FASD may affect between 1.1% and 5% of the U.S. population, potentially more common than autism.

FASD diagnosis is challenging, as most children with the condition lack physical symptoms and may go undiagnosed due to a lack of awareness.

Dr. Judith Eckerle explains that some children with FASD have high IQs but struggle with abstract reasoning and impulse control.

MRI technology shows visible abnormalities in the brains of children with FASD, such as reduced brain size and processing issues in critical areas.

FASD symptoms can overlap with ADHD, such as hyperactivity and impulse control problems, but the root causes are different.

The importance of early intervention is stressed by experts, noting that it can help mitigate the effects of FASD.

Parents and support groups play a crucial role in helping children with FASD navigate their challenges and thrive in everyday life.

Adoptive parents of children with FASD don't carry guilt, but birth mothers like Carol Peterson often struggle with feelings of responsibility.

Carol Peterson, who drank during early pregnancy, shares her emotional journey and the guilt she felt after her daughter was diagnosed with FASD.

Dr. Jeffrey Wozniak’s pioneering MRI research offers unprecedented insights into the brain damage caused by prenatal alcohol exposure.

Programs like the Minnesota Organization on Fetal Alcohol Syndrome provide crucial support and community for families affected by FASD.

Transcripts

JUDY WOODRUFF: It's a condition that has flown under the radar for decades, sometimes referred

to as the invisible disability.

We're talking about fetal alcohol spectrum disorder, which can happen if a mother drinks

during pregnancy.

Amna Nawaz reports from Minnesota on the problem and recent research that suggests it may be

far more common than previously thought.

Here's the first of her two stories on the subject.

CHILD: That's my feet.

AMNA NAWAZ: Moses looks and sounds like your average healthy 5-year-old.

But his dad, Brandon, noticed Moses didn't always act like one.

He has trouble with loud noises.

He sometimes gets very upset, much more easily and intensely than other children.

They're at the University of Minnesota Masonic Children's Hospital to try and find out why.

DR.

JUDITH ECKERLE, University of Minnesota Masonic Children's Hospital: Where should I listen

with my stethoscope?

Yes, good.

AMNA NAWAZ: One possibility, Moses might have fetal alcohol spectrum disorder, or FASD,

caused by prenatal alcohol exposure.

Moses was adopted, and Brandon believes his birth mother drank while pregnant.

Dr. Judith Eckerle specializes in adoption medicine, and sees a lot of families struggling

with FASD.

DR.

JUDITH ECKERLE: We see kids on the FASD spectrum who have I.Q.s above the normal range, actually,

so -- who are considered very smart, but then they're missing certain other areas, like

the abstract reasoning, or being able to control impulses.

We have other kids on the FASD spectrum who have frank intellectual disability, used to

be called mental retardation.

And those kids really do struggle with kind of the basic learning and may need support

lifelong because, just cognitively, they're not able to process in the same way.

AMNA NAWAZ: Doctors in Minneapolis see around 300 kids in the FASD clinic, but they say

that's just the tip of the iceberg.

They estimate, across Minnesota, prenatal alcohol exposure affects more than 7,000 newborns

each year.

Nationally, a recent study shows the numbers are much higher than previously thought, cutting

across racial, ethnic and socioeconomic lines.

Conservative estimates, published in "The Journal of the American Medical Association,"

show anywhere from 1.1 to 5 percent of the U.S. population is affected, meaning it could

be more common even than autism.

DR.

JUDITH ECKERLE: So, the results of the study didn't surprise me, unfortunately, because

I do think that there are a lot of children who are undiagnosed.

AMNA NAWAZ: Dr. Jeffrey Wozniak says most children with FASD don't get diagnosed, either

because people don't know to look for it or don't know what they're looking for.

DR.

JEFFREY WOZNIAK, University of Minnesota Masonic Children's Hospital: The ones that get referred

to our diagnostic clinics are the ones who are having the most problems and are the ones

who happened to have been seen by a social worker or a nurse or a pediatrician who knows

something about FASD.

AMNA NAWAZ: Complicating diagnoses, only the most severe cases have any outward physical

symptoms, like smaller eyes, flattening between the nose and mouth, and a thinner upper lip.

For most kids with FASD, the differences are on the inside.

DR.

JEFFREY WOZNIAK: The brain is smaller in the child who has FASD.

AMNA NAWAZ: Wozniak's pioneering work with MRIs offers an unprecedented look at the brain

damage caused by prenatal alcohol exposure.

DR.

JEFFREY WOZNIAK: You can clearly see this abnormality in the back part of the brain.

This is the part of the brain that is involved in all sorts of functions, including attention

and perception and integration of information.

So this is a child we know is going to have a lot of processing abnormalities as a result

of this.

AMNA NAWAZ: Doctors say FASD can look a lot like disorders like ADHD.

Some symptoms, like hyperactivity, short attention spans and impulse control, can overlap.

But the causes can be different.

Pediatrician Eckerle takes a page from a favorite children's book to explain.

DR.

JUDITH ECKERLE: Amelia Bedelia was very concrete.

She could understand if you said, go draw the blinds, Amelia.

She would sit down and draw a picture of blinds, instead of closing them because she didn't

know there were multiple meanings.

And that is kind of an illustration I use sometimes for families.

They don't necessarily understand abstract reasoning or abstract concepts as much.

AMNA NAWAZ: This is a meeting for teenagers with FASD.

Slime-making is one way to draw them in, but it's also a chance to meet with adult mentors,

to talk about the future, and to work out how to navigate it.

WOMAN: Do you have any final papers or studying?

WOMAN: Study for tests.

WOMAN: So, maybe -- yes, you could do that.

Study for an exam.

AMNA NAWAZ: It's also a chance for kids with FASD to hang out together, to feel understood,

in a world where they often are not.

Ruth Richardson is the director of programs for the Minnesota Organization on Fetal Alcohol

Syndrome, the sponsor of this meeting.

RUTH RICHARDSON, Director of Programs, Minnesota Organization on Fetal Alcohol Syndrome: This

can also be a very isolating experience for families, because if their family members

don't understand FASD or their overall community doesn't understand the disability, we have

seen families who are afraid to take their kids to church, because they don't want to

deal with the shame or the stigma when people don't understand the disability.

AMNA NAWAZ: Dave Riege adopted Ben when he was 5 years old.

DAVE RIEGE, Parent: Everybody who is here basically has the children with the same problems.

I mean, it's not like anybody else at says, well, geez that's just kind of strange, because

everybody is in the same boat.

So it works out good.

AMNA NAWAZ: Lisa Joy says the group is good for her son, Andrew, and for her as well.

LISA JOY, Parent: Parents can come together and get to know and connect to find out what

they're doing to help their kids in similar struggles, that what they are doing to overcome

them.

And just that support is really important.

AMNA NAWAZ: Even though there is no known cure for FASD, experts say early intervention

can help to mitigate the symptoms.

Moses' dad, Brandon, says he will make sure his son's future will be just as bright.

MAN: We love all of our kids the same.

It doesn't change anything.

And if that's the official diagnosis, that's something we will work on, to channel him

to the right people.

And he still lights up a room.

He's still the same great kiddo that we see every day.

AMNA NAWAZ: For adoptive parents, an FASD diagnosis, difficult though it may be, doesn't

carry with it the weight of any guilt.

For birth mothers, like Carol Peterson, the process is different.

Peterson struggled with alcohol for years and was drinking before she knew she was pregnant.

Though she quit cold turkey three months into her pregnancy, the damage to her daughter,

Kylene (ph), was done.

CAROL PETERSON, Parent: I would take her to these early childhood places.

It seemed like the ones that were the same age were more advanced than her.

So I started to notice she was a little bit, like, delayed, I thought.

But I wasn't sure.

AMNA NAWAZ: What would you worry about in moments like that?

CAROL PETERSON: I would, wonder did my drinking do this to her?

AMNA NAWAZ: Kylene, now 27, was diagnosed with FASD at 6 years old.

Carol opened up to us about the guilt she carried for years, and her hope for her daughter's

future.

More of their story tomorrow night.

For the "PBS NewsHour," I'm Amna Nawaz in Northern Minnesota.