Adults With Fetal Alcohol Syndrome

When someone says “fetal alcohol syndrome,” we tend to think of babies. But babies with FAS grow up to be children with FAS. And children with FAS grow into adults, who continue to grapple with the condition. What is life like for adults with fetal alcohol syndrome? The answers may surprise you. 

Today, we’ll cover everything you need to know about fetal alcohol syndrome from womb to adulthood so you can make informed decisions about your drinking habits, especially while pregnant or hoping to become pregnant. 

Fetal Alcohol Syndrome: A Brief Overview

Fetal alcohol syndrome (FAS) falls under the umbrella of a group of conditions called “fetal alcohol spectrum disorders” (FASDs). All of these conditions are caused by exposure to alcohol in the womb. FAS is the most severe of the conditions on the spectrum. It’s most commonly known for certain facial features, behavioral problems, and some learning deficits. For more details, check out our blog “How Much Drinking Causes Fetal Alcohol Syndrome?”

For our purposes here, the most important thing to know is the span of this condition and how it translates into adulthood.

Children With Fetal Alcohol Spectrum Disorders 

The National Institutes of Health (NIH) estimate that in the U.S. alone, 1%–5% of first graders are affected by FASDs. According to the National Institute on Alcohol Abuse and Alcoholism (NIAAA), at least 1 in 10 pregnant women drink alcohol. Using medical records, the CDC has estimated that nearly 1 in every 1,000 live births has FAS. And 6 to 9 out of every 1,000 school-aged children have FAS. We’ll have to use our imagination (especially those of us who are math-challenged) to understand the scope of this condition, but for a completely preventable diagnosis, these numbers are disheartening. 

These children likely struggle with any combination of behavior problems, heart conditions, speech and language delays, hearing problems, and more. And despite all the anti-bullying posters we adorn the school hallways with, it’s possible they have to deal with bullies as well. If they live with adults who struggle with alcohol use disorder (AUD), they may have bullies at home, too. On that note, around 70% of children in foster care in the U.S. have FASDs.

So what happens when these children grow up? Let’s see what the research says.

Adults With Fetal Alcohol Syndrome

Thankfully, with proper therapies and treatments, symptoms can be managed, but FAS doesn’t go away. It’s not something kids “grow out of.” If left untreated, the problems can worsen and compound.

This isn’t to say that a child with FAS can’t grow up to be successful. There are rumors floating around that some wildly successful actors and actresses suffered from FAS, and even if those rumors aren’t true, there are plenty of successful, nonfamous people with FASDs. But at the end of the day, it’s a “spectrum,” and there are a lot of variables, so it will affect everyone differently. Let’s take a look at what FASDs might look like in adulthood: 

Physical Challenges

Any of the physical challenges that come with FASDs can persist into adulthood: 

• Physical abnormalities. One reason there are so many rumors about celebrities and actors with fetal alcohol syndrome is because of distinct facial features in people with FAS. These include a thin upper lip, small eyes, and a low nasal bridge. People see these features on celebrities and make assumptions about them.

• Vision and hearing problems. Adults with FASDs often struggle with vision and hearing problems, making it difficult for them to learn and follow instructions.

• Heart problems. According to the NIH, 50% of children born with FAS and 38% of children with FASDs experience some form of alcohol-induced congenital heart defect, which can follow them into adulthood and affect their quality of life, especially if it wasn’t treated early on.
 
• Lower life expectancy. A 2016 study found that the life expectancy of people with FAS is 34 years old, which is alarmingly lower than the general population. Some causes of death underscore their physical challenges, including nervous system and respiratory diseases, digestive system diseases, and congenital malformations. 


But physical challenges are only the tip of the iceberg when it comes to living with FASDs. 

Cognitive Challenges 

Along with the physical challenges come cognitive challenges. Most of these are a result of brain shrinkage in the womb and include the following:


• Learning disabilities
• Poor memory
• Attention deficits
• Poor judgment and impulse control


To make matters worse, these cognitive issues can lead to secondary conditions that are just as troubling. Let’s get into those a bit more.

FASD Secondary Conditions

As a result of the complex conditions that come with FASDs at birth, some secondary conditions might also develop: 

• Aggression toward others
• Violations of social norms, rules, and laws
• Depression
• Anxiety
• Inappropriate sexual behavior (especially if the person is a victim of abuse)
• Drug or alcohol dependence


Because of these secondary conditions, many adults with FASDs sadly have trouble with the law, struggle to sustain employment, and are unable to live independently. 

Advocacy and Resources for People With Fetal Alcohol Syndrome

Fortunately, there are more resources now than ever for people navigating FASDs from in-utero to adulthood. From doctors to nurses to social workers to podcasters, there are professionals everywhere dedicated to educating, treating, and encouraging those with FASDs.

Ongoing Research

The NIAAA continues to fund research and projects that treat women with AUD and prevent FASDs. Under this funding, there are several notable research centers dedicated to FASD research:

• The Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD). Its main focus is accelerating and translating research findings. 
• New Mexico Alcohol Research Center (NMARC). Its central focus is on understanding the neurobiology of the behavioral problems typical of FASDs and improving early diagnoses and interventions. 
• Developmental Exposure Alcohol Research Center (DEARC). It focuses on prenatal and postnatal alcohol exposure. 
• Native Center for Alcohol Research and Education (NCARE). Its research includes a study implementing intervention for Native American women of reproductive age. 

This ongoing research is sure to give us more answers, more hope, and hopefully, more inspiration to avoid alcohol while pregnant. 

Advocacy

FASD United, formerly the National Organization on Fetal Alcohol Syndrome (NOFAS), is the main advocacy group for people with FASDs. They work to prevent prenatal exposure to alcohol by educating the public and supporting affected individuals and families.

Breaking the Cycle

The good news is that FAS (and all other FASDs) is completely preventable. It’s not contagious. It’s not a genetic anomaly. It’s only caused by drinking while pregnant. Therefore, we can prevent it by avoiding all alcohol (and other harmful substances) while pregnant. The better news? It’s never too late. The sooner a mother stops drinking during pregnancy, the better it will be for the baby.

But what if we struggle with AUD? Is there any hope for us? The answer is a resounding yes. There is always hope for someone who has a desire to change. Here are several things you can do to change your relationship with alcohol: 

• Get informed. Read up on FASDs and their impacts. The first step to fighting a problem is understanding it. 

• Get help. If you or someone you know is pregnant and struggling with alcohol use, reach out for help. Local organizations and apps like Reframe can help expectant mothers quit drinking, no matter how far along they are. 
• Get moving. Regular exercise helps ward off cravings, decreases stress, and improves mental health. Check out some exercises for pregnancy here!
• Get creative. Find a new hobby, even if that hobby is concocting mocktails. Learning and creating new things will give your brain the dopamine it craves without alcohol. 

• Get mindful. Some mindfulness exercises will not only help you reduce stress and ride out cravings, but they will also help your overall health throughout pregnancy. 

• Get involved. There’s no better way to escape your problems than to focus on someone else’s. Donate to or volunteer for an organization like FASD United or your local children’s home to make a positive impact in the FASD community. Seeing the effects of FASDs firsthand might give you the extra boost of motivation you need to abstain from alcohol. 

We know this journey can be especially difficult for those who developed alcohol dependence before they got pregnant, and that’s why we’re here to help educate, motivate, and encourage our Reframers every step of the way!

Final Thoughts

Fetal alcohol spectrum disorders, especially FAS, can have lasting impacts on a person’s life from childhood to adulthood. Even though it can’t be reversed, it can be managed, and it can be prevented in the future. There is ongoing research and numerous circles of support and advocacy. We can break the cycle of FASDs by avoiding alcohol at all stages of pregnancy. Whether you’re living with FASDs or worried about your pregnancy, help is available every step of the way!