When Ellen Corona adopted her now 16-year-old son Scott , he was a perfectly healthy baby. But in the third grade, he started to have problems. He was treated for ADHD and bipolar disorder. Four years later while seeing a specialist in Tourette Syndrome, he was finally diagnosed with fetal alcohol spectrum disorder. But the diagnosis didn’t provide answers.
“There’s a lot of gray areas, areas they don’t understand,” said Corona, 53, of Wildwood, Mo. “There’s no specific line of treatment.”
Fetal alcohol spectrum disorder is a group of mild to severe physical,
neurological and behavioral conditions caused by a mother drinking alcohol
during pregnancy. The term “fetal,” however, can be misleading. The disorder is
often diagnosed during late childhood, and the symptoms are life-long.
Despite the need, no social services programs in the U.S. are geared to treat
the specific symptoms of youth and young adults with FASD, said Leigh
Tenkku, assistant professor of family and community medicine at St. Louis
University . Instead, those suffering with the disorder are treated with a
hodgepodge of programs for other developmental disabilities. Interventions are
often nonspecific and lack scientific evaluation.
“The brains of individuals with FASD are not fully developed, which affects their
ability to handle emotions, problem solve and pick up on social cues,” Tenkku
said. “As they get older, these problems affect their ability to maintain a job,
their relationships and their parenting abilities.”
Researchers at SLU are trying to change the course for youth struggling with
the disorder. The university is conducting one of two research projects funded
by the Centers for Disease Control and Prevention to develop evidence-based
treatment targeting older youth and young adults. The other is at the University
of California, Los Angeles.
SLU’s research project, called Partners for Success, combines a personal
mentor with biweekly therapeutic home visits for the family. The mentor will
model appropriate behavior and help those with the disorder to integrate
techniques taught during home visits into their daily lives. Researchers are
trying to recruit 100 study participants ages 16 to 25.
“This is a totally new approach to mentoring older children and adults with
FASD, but it’s built on well-established research in the field,” Tenkku said. “This
program is very promising, and we’re hopeful that it will revolutionize the way we
support these individuals.”
Corona recalls how the medication for ADHD left her son without an appetite
and sleepless. Middle school was the hardest time, she said. He struggled to fit
in, was angry and impulsive. She’s tried everything from chiropractic care to
massage therapy to help, even buying punching bags for him to help let off
steam.
“We just gritted our teeth and got through,” she said. “Every day was so sad
and so depressing.”
There is no known safe amount of alcohol to drink while pregnant, health
experts say. Because about 60 percent of women do not know they are
pregnant at four weeks’ gestation, a critical period in organ development, the
CDC warns women to not drink alcohol if they are sexually active and do not
use birth control.
Fetal alcohol syndrome was first labeled in 1973 and represents the severe
end of the FASD spectrum. People with FAS have abnormal facial features and
growth problems along with a mix of other physical and behavioral problems.
Scientists have and are still learning about different levels of neurological
damage caused by alcohol use during pregnancy. The CDC and other experts
have developed guidelines for diagnosing FAS, but the diagnostic criteria for
FASD is still in the works.
“This is still a very new field, and we are still learning about this,” Tenkku said.
Studies have shown that one or two cases of FAS occur for every 1,000 live
births in the U.S. The CDC estimates that at least three times more suffer from
FASD. The estimated cost for FAS alone is more than $4 billion annually. Early
intervention, however, can improve symptoms and prevent costly outcomes.
“Many go undiagnosed as having FASD, and they end up in our mental health
treatment centers. They end up in our substance abuse centers, and they end
up in our jails,” Tenkku said.
Corona said a mix of medications is helping her son sleep and ease his mood
swings. He is doing well in school thanks to a special education plan addressing
his needs. But, she said, he still doesn’t grasp cause and effect. He melts down
when things don’t go his way. She wonders if he will be able to go college, hold a
job.
