The Hidden Diagnosis

How Fetal Alcohol Spectrum Disorder Affects the Foster and Adoption Community

Think of a vibrant redheaded girl who, on the outside, looked like every other active, playful kid at her school, but the truth inside was a bit different. This girl had Fetal Alcohol Spectrum Disorder. She was one of many youth and adults brave enough to tell their stories to the world on the cdc web page on the topic.

What Is FASD?

Children and adults with this disorder can display any number of symptoms. Maybe a parent will notice that they have really high good moods, and when things aren’t going well, these children might nosedive into very depressive behaviors. These kids can have a hard time focusing and get distracted by every cloud and squirrel they see or imagine. Often learning disabilities go along with an FASD diagnosis, if kids are lucky enough to be correctly diagnosed at all.

Where Does FASD Come From?

One thing all of these people have in common is that at some point before they were born alcohol made its way from mom’s evening beer or wine to the womb they inhabited. Alcohol sloshed through the umbilical cord where the baby got all its nutrients. This happened before their little liver was formed enough to filter the correct toxins out. We don’t know how much it took to affect each person diagnosed with FASD. Doctor’s say there is no known amount of alcohol that is considered safe when a woman is pregnant.

The Hidden Diagnosis

When these children are born many of them seem just as complete as their ten fingered and ten toed neighbor. This may hold true until they start missing milestones as they grow. FASD can be extremely hard to diagnose unless the alcohol consumption is a known factor. Many children who deal with this condition end up in the care of foster or adoptive parents early on in their lives. It has been estimated that 70-80% of the children in foster care have an FASD. Children adopted from eastern european countries are also more likely to experience this hidden disorder.

FASD is often misdiagnosed because the symptoms can be so varied. One family tells the story of their adopted daughter who began stealing before most children even understand the concept. As a toddler, she started taking things that weren’t hers, and when her parents instituted the expected consequences, none of them seemed to make a dent in the behavior. Over time and by way of varied medical professionals along with some internet sleuthing, this young lady’s mom was able to close in on the proper diagnosis.

One of the big factors that can confuse people when they are looking at a person with FASD is the lack of outward clues. A person with FASD may look at you and repeat back the exact instructions they were just told, even though internally they have no understanding of what those instructions mean. Children with FASD may learn slowly, or unlearn things they had down pat. They may appear flighty and have difficulty concentrating or focusing. Maybe they completely miss nuance and the punch line of jokes, because their abstract thinking is deficient. People surrounding them may think they should just apply themselves and grow up, when that is exactly what their mind is not able to help them do. While parents and children can find workarounds to get them through the hurdles of daily life, the damage originally done to the brain in utero doesn’t go away or improve.

The fact that FASD is completely preventable can be a small comfort. So many of the factors going into the lives of the women who give birth to babies with this condition are complicated. A lot of these birth mothers have many other issues besides alcohol use. Trying to solve them all is an age-old goal of societies who want to eradicate poverty and abuse, but this goal has proved elusive.

So, one of the best case scenarios might be that of Kathryn, who I talked to about the challenges with her son. Even though she took advantage of extra support provided by the county she adopted him through, and he began being evaluated in preschool, it wasn’t until her son was ten years old that he received his FASD diagnosis. Kathryn encourages parents who suspect FASD to continuously advocate for their child until their needs are met.

“Keep taking your kid if you feel like there’s something that’s different. You feel like there’s neuro diversity and not that there’s anything wrong with that.” She says

Kathryn continues to advocate for her son, and has been able to watch him succeed in his own way as he grows up with this unique challenge. She and others who speak out about FASD hope that broader knowledge of the condition will lead to more children reaching a correct diagnosis and getting the support they need.

Listen to the Podcast:

The Hidden Diagnosis by Kathryn