Fetal Alcohol Spectrum Disorders are common and sometimes invisible
Fetal alcohol exposure is a leading cause of intellectual disability in the United States. The cause of Fetal Alcohol Spectrum Disorders (FASDs) is so straightforward and the entire problem so seemingly preventable that learning how many people are affected by the condition can be shocking, tragic, and certainly frustrating.
The more closely we look at the numbers, the more significant the problem seems to be.
Reviews of medical records in some American communities suggest that less than 1 out of every 1,000 children meets the diagnostic criteria for Fetal Alcohol Syndrome (FAS). But in-person assessments (which are more reliable) put the number much higher, at between 6 and 9 children per 1,000.
And that’s just FAS. FAS is the most extreme end of the FASD spectrum. There are far more people who fit into the FASD category. Results of one study suggest that 2.4 to 4.8 percent of children in a midwestern community were affected by FASDs. Another larger-scale analysis paints a similar picture, putting the rate of FASD among schoolchildren in the U.S. and some western European countries at 2 to 5 percent.
Whoa, whoa, whoa. You’re telling me that 2 to 5 percent of all children are affected by this condition? That FASDs affect more kids than both peanut allergies and diabetes? And that no one is talking about this?
“You can have great science and data, but if the general public can’t understand it, then it’s really only good for a very small, academic audience,” said Gabe Chasnoff, director of the documentary film Moment To Moment: Teens Growing Up with FASDs.
When I asked him about his decision to make the film, he pointed to insufficient awareness about FASDs among members of the public and even the healthcare professionals whose advice we rely on. And it’s not just a matter of knowing the numbers, he said. People don’t feel connected to the problem because they don’t know the stories behind the numbers.
“The way people connect is through story, character. There’s no reason we can’t add those components to research,” he said.
Living with FASDs
The film’s title, Moment To Moment, hints at what it’s like to have an FASD.
Lots of people with FASDs have a hard time with memory and learning. More so than many, a person with an FASD really is living “moment to moment.”
The reason for these memory and learning problems is that alcohol exposure interferes with brain development. It can reduce the size of certain regions of the brain and can also hamper communication between different parts of the brain. When communication throughout the brain doesn’t work smoothly, people tend to have problems with what’s called “executive function.” Executive function is the term for mental processes that allow us to plan, focus, learn from experience, prioritize–basically, to get things done.
To illustrate: Cara, one of the teens in Moment To Moment, can’t track time very well. Not only is it difficult for her to read the hands of a clock that say “3:45pm,” she also has trouble processing the concept of 3:45pm, what it means in relation to other times of the day. Another teen, Brittany, is extremely literal: at work, she can follow specific instructions, but not fill in gaps with what might be considered “common sense.” Financial matters, sex and relationships, and academic responsibilities all present challenges for the teens featured in the film.
And of course, families and caretakers of teens with FASDs also find themselves living “moment to moment.” All of the parents in Moment To Moment are adoptive parents, whose grit and ingenuity are on full display in the film.
Because FASDs last a lifetime, these parents face tough questions about whether and how to help their kids leave the nest. Like all teens, the ones featured in Moment To Moment are becoming more independent. But all still struggle–to some degree or another–with emotional regulation, organization, and remembering their mistakes so as to learn from them. Some show signs of fetal alcohol exposure in their facial features, but not all. Looking “normal” presents its own difficulties: the world, then, expects those teens to act “normally” and when they don’t, can deliver harsh consequences.
That was the case for Jeffrey Landrigan, who was convicted of murder and executed by the state of Arizona in 2010. Mr. Landrigan had been diagnosed with FAS, a fact that was not presented by the defense during his trial. In a statement issued after the trial, presiding Judge Cheryl Hendrix said that if she’d known, she would have found that the organic brain damage caused by maternal alcohol use was sufficient to call for leniency and not sentenced Landrigan to death. Shortly thereafter, the American Bar Association passed a resolution to improve the recognition and understanding of FASDs in the legal system. However, FASDs are still under-recognized and certainly under-treated in the adult and juvenile justice systems.
Consumption of alcohol while pregnant is not a crime. The ABA’s resolution says it explicitly: “Neither the Resolution nor this Report should be construed as suggesting that use of alcohol during pregnancy is, or should be, a criminal act.” The film does not harp on what the biological mothers “should have done.”
This is about creating a single narrative that we can all get behind. “This isn’t just a healthcare issue,” said Chasnoff. “It’s a legal issue, it involves the schools. It’s about creating a single narrative that we can all get behind: that no amount of alcohol is safe to consume during pregnancy.”
An ounce of prevention is particularly important in this case. Thought you were going to make it through a whole IRETA blog post without us saying “SBIRT?” Wrong you were! IRETA works under a CDC grant to promote the use of Screening, Brief Intervention and Referral to Treatment (SBIRT) to prevent FASDs. SBIRT for women of childbearing age can include information about unplanned pregnancies and the irreversible effects of alcohol use on fetal development.
NTI Upstream: More about Moment To Moment, including a schedule of screenings and how to order it online
SBIRT in Early Start Programs – An Integrated Model of Substance Abuse Intervention for Pregnant Women: Recorded webinar of an SBIRT program led by the excellent Nancy Goler, MD
Project CHOICES: an evidence-based approach to infusing education about FASD and contraception into substance use screening for women who are or may become pregnant