Fetal alcohol syndrome is still stigmatized

When Barb and Michael Clark adopted their oldest daughter, Akila, at 5 months old, they never envisioned the difficult road ahead. The Minneapolis couple couldn't see the brain damage caused by prenatal exposure to alcohol, but it didn't take them long to realize something was wrong.

"As soon as she was walking and talking I knew things were a little off," Barb Clark said. "Consequences never worked for her, and she was 2 years old when she stole for the first time."

While "stealing" is a typical behavior for toddlers who don't yet understand the concept, Akila's early tendency to take things and to not learn from any consequences was concerning. Other behaviors — such as her high energy, attention-seeking and sleeplessness — caused the couple to seek guidance from medical professionals, but their concerns were often dismissed.

Finally, Clark began researching some of the behaviors online and found sites about Fetal alcohol spectrum disorder (FASD). Finally, at age 6, Akila was diagnosed with Fetal Alcohol Syndrome.

Akila, who now is 18, is one of the thousands of children and young adults in this country living with FASD, which is the umbrella term for Fetal alcohol syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND) and Alcohol-Related Birth Defects (ARBD).

The Centers for Disease Control and Prevention estimates that up to 1.5 infants are born with FAS for every 1,000 births. But that figure might be way too low. Other studies of school-age children estimate that six to nine out of 1,000 children have FAS. And a new study of 6,639 first-graders by the National Institute on Alcohol Abuse and Alcoholism has bumped estimates to 11.3 to 50 per 1,000 children.

The Clarks adjusted how they respond to their daughter and her behavior. They had to learn how to look at their daughter's behavioral issues differently, recognizing that brain damage causes those behaviors.

As parent support coordinator for the North American Council on Adoptable Children, Clark now trains parents and professionals on a number of topics, including parenting children with FASDs. Much of that training is offered at foster care agencies and to foster parent groups.

"It's been estimated that 80 percent of children in foster care have an FASD," she said. "I don't think in the foster and adoptive community we're talking about fetal alcohol enough."

Dr. Doug Waite agrees. As medical director at the Keith Haring Clinic at New York's Children's Village, he's worked with many children with FASDs in the past 16 years. But before that, he said, it wasn't really on his radar, and it was barely touched on during medical school and residency training.

"Working here, I started seeing a lot of kids in our residential treatment center that nobody could really take care of because of behaviors," Waite said. "No one knows for sure [how many have FASDs] because kids aren't being diagnosed."

Although the syndrome was first named in a 1973 study by Kenneth Jones and David Smith, it wasn't until 1996 that the Institute of Medicine published the first diagnostic categories for it. While more research since then has confirmed the long-term effects of prenatal alcohol exposure on the brain, Waite said few doctors and professionals are talking about FASDs and the neurodevelopmental disorders related to it.

That stigma, coupled with the fact that some of the earliest research was done in the Native American community, has resulted in layers of challenges that prevent professionals and society as a whole from taking a bigger look at the impacts of alcohol on a developing fetus, Waite said.

"It's fraught with stigma, and it's fraught with racial overtones," Waite said. "While we now know the women who drink most during pregnancy are white, college-educated women, there continues to be an assumption that minority children are most likely to be affected, which is false."

Kathy Mitchell has been working on FAS issues for many years as director of the National Organization on Fetal Alcohol Syndrome, which was founded in 1990. Her organization is battling the myth that small amounts of alcohol are safe to drink during pregnancy. "There hasn't ever been a scientific paper that states it's safe to drink during pregnancy," she said.

In 2016, Minnesota became the first state to require foster parents to receive training on FASDs. While the law requires only one hour of training per year, it's more than any other state requires.

"When we educate folks in child welfare, they get it," Mitchell said. "Every time I do a training, it creates change agents."

In the meantime, early intervention is the only thing that has shown signs of improving a child's development. For families like the Clarks, that has meant shifting their expectations for their daughter and always remembering that her behaviors come from brain damage that occurred before she was ever born.

"We need to stop trying to fix them and focus on the relationship," Barb Clark said. "Shift how you're doing things and you'll see more calm in your home. There's a lot of hope still, we just have to shift our paradigm in how we look at success."

Today Akila lives in a group home close to her family, whom she sees a couple of times a week. She's also enrolled in a transitional school program that focuses on vocational and life skills.

"She is an amazing and resilient young woman whom we are incredibly proud of," Clark said. "She has overcome more obstacles in her short life than most of us can fathom."