Now is the time to prevent fetal alcohol spectrum disorders
Rotarians are bringing awareness to causes of FASD and providing support to those already affected
When Tami Eller was 6 months old, the grandparents raising her began noticing troubling signs: Her head seemed unusually small, and she wasn’t hitting growth milestones, though other aspects of her development seemed on track.
Eller, whose mother had a history of substance abuse, was identified as having a fetal alcohol spectrum disorder (FASD), a range of conditions resulting from exposure to alcohol during a mother’s pregnancy. Since her condition was discovered early, she was able to get the treatment and help she needed. She had occupational therapy for her handwriting and an individualized education plan, which helped her succeed in school and eventually earn a master’s degree in counseling psychology. Yet as an adult, she faces challenges daily: Her hands are very small, with underdeveloped muscles; some tactile sensations, such as clothing tags against her skin, are painful, evoking a fear response; she can’t take on too much work or it impacts her health.
"Growing up," she says, "I always kind of knew what happened. And I now know how my brain works differently, and what accommodations I need. If I hadn't had early identification, and those interventions, I probably wouldn't have gotten as far as I have."
Today, Eller is a "self-advocate," meaning she was affected by prenatal alcohol exposure and now works to educate others about the disorder. The longtime Alaskan is the associate director of community programs at Alaska Child and Family, and in 2019 she traveled with a Rotary Foundation-funded vocational training team from Alaska to the Australian state of Western Australia to help with a Rotary project called Making FASD History. Both places have high levels of the disorder.
While in Australia, Eller had a familiar experience. "Whenever you give a presentation on FASD to a large enough group," she says, "there's always someone who says either, 'That's me' or 'That's someone I know.' When we were presenting to the teachers in Australia, they said, 'Oh, that's what we've been missing this whole time. That explains what we're seeing.'"
Knowledge about FASD has come a long way since fetal alcohol syndrome, the most pronounced of the spectrum of disorders, was first identified about 50 years ago. Today, for instance, we know that people with fetal alcohol syndrome, which often causes distinctive facial features, represent just a fraction of those affected by prenatal alcohol exposure, meaning FASD is largely a problem hiding in plain sight.
"Fetal alcohol syndrome is the most visible part of that spectrum. But facial features are only impacted in the third to fourth week of gestation," explains Marilyn Pierce-Bulger of the Alaska Center for FASD, one of the vocational training team members. Only 4 percent of people with prenatal alcohol exposure meet criteria for full fetal alcohol syndrome. Another 80 percent with brain-based differences don't have the associated facial features.
The range of problems on that spectrum include damage to executive function, sensory processing, attentional control, visual and language processing, fine motor skill, and more. Thus, the more inclusive term: fetal alcohol spectrum disorder.
Worldwide, FASD is a huge problem, and more often than not, those with the condition don't get the kind of support Eller received. In recent years, Rotary clubs have started to take on the issue. In South Africa, which is estimated to have the highest rate of FASD in the world, a global grant helped develop an interactive sports-based education and prevention curriculum for South African youth to warn them about the dangers of fetal alcohol spectrum disorders. In and around Warsaw, Poland, another global grant developed support for families and family-run group homes to care for children with FASD, with services in speech therapy, psychotherapy, education, and other areas.
Rotary members got involved because they were concerned about "the destruction of so many lives and the pressures FASD places on people in some very poverty-stricken communities," says Bruce Dufty, a member of the Rotary Club of Western Endeavour, Australia. In some predominantly Indigenous communities there, 20 percent of children have been diagnosed with disorders related to prenatal alcohol exposure.
In 2015, Dufty started making inroads into various communities, working to build trust. He regularly made the nine-hour journey from Perth to the small town of Leonora, which is located in a region that is home to some 16 Indigenous languages and where one in seven people are members of Aboriginal communities.
"When we started," says Louise Hancock of the Rotary Club of Osborne Park, Australia, and chair of Making FASD History, "we had no idea how big it was going to be and how much time and effort it was going to take. It was certainly the biggest project our club has ever undertaken."
In 2018, Alaska Rotarian Diane Fejes, then-governor-elect of District 5010, traveled to the International Assembly, the training seminar for incoming district governors. In a conversation with her Western Australian counterpart, Charles Johnson, he mentioned Making FASD History.
"We realized we had a lot of the same issues, with the wide geography, where you fly and drive a lot," Fejes says, "along with the introduction of alcohol into populations that typically did not have it and the way FASD affects people for the rest of their life. The only prevention is to not drink in utero. So it's very easy, but not easy. It's a simple solution, but hard to implement."
That chat, along with the community assessment begun by Dufty, eventually led to the formation of the vocational training team. The grant application benefited from years of community involvement before it was submitted.
“FASD is a preventable disability. That is the thing we have to remember.”
By the numbers
Estimated percentage of individuals with prenatal alcohol exposure who show no outward physical symptoms
Estimated annual costs for caregivers of people with FASD in Alaska
Rate of children in Leonora, Australia, born with FASD
The team members flew to Australia to talk to people about recognizing, preventing, and dealing with the disorders. "We organized a meeting with the Western Australia police," Hancock says. "We ended up with 120 police at that educational session. They were dying for more information."
"People flew in from all over," says Michael Jeffery, a member of the Rotary Club of Barrow (Nuvuk), Alaska, who traveled to Australia. "They kept having to change the venue because more and more people were interested in participating. We also presented at their district conference, so we were able to get the message out to Rotarians all over Western Australia. It was very successful."
In addition to the Alaskans' visit, Making FASD History included a program for diagnosis and assessment of children in Leonora, and another phase that focused on early intervention and prevention.
"Probably the most successful part was the preventative side," says Dufty. "And that's actually starting to pay some dividends. We're getting some young people no longer becoming pregnant very early."
"FASD is a preventable disability," says Pierce-Bulger. "That is the thing we have to remember."
It remains to be seen if the results will follow a similar (non-Rotary) project in Western Australia's Fitzroy Valley, which saw a decline in the number of women who reported drinking during pregnancy from 61 percent to 32 percent. But the project has brought the issue to the fore.
"We feel satisfied that it's been a very worthwhile project," says Hancock, "and that we've made a significant difference in a remote town. Now hopefully the mainstream services will learn from the work we've done and repeat it in other regions. And we're also hoping in 2023 we'll be able to send a team of our own to Alaska."
This story originally appeared in the August 2022 issue of Rotary magazine.