The leading preventable cause of mental retardation in the U.S. is wreaking havoc in families, classrooms and the judicial system- and you may have never heard of it.
BY LAURA FINCH
Angie Magliozzi never expected to raise her two grandchildren.
She was especially unprepared to raise two children with a little-known form of brain damage. And she’s terrified of what may happen to them when they’re no longer under her care.
Arianna, 7, has issues with boundaries and impulsivity. At school, she’ll get up and wander around her classroom randomly. “I worry about her when she gets older,” Magliozzi confided during a phone conversation. “She has no ability to recognize danger.”
Nicholas, 10 ½, has no qualms about meeting up with strange kids at the playground and obeying whatever they tell him to do. “He’s the perfect target,” Magliozzi said. “He has no filter.”
Arianna and Nicholas are both affected by Fetal Alcohol Spectrum Disorders (FASD)- neurological and developmental deficits that begin in utero when a pregnant mother consumes alcohol or drugs. After their parents died, Magliozzi became the sole caregiver for both children. Nicholas’ more severe disorder gave him the distinct facial characteristics that many people associate with Fetal Alcohol Syndrome (FAS), but Arianna’s did not.
The spectrum of disorders caused by fetal alcohol exposure are wide, but all have one basic thing in common: the loss of executive function, or the ability to plan, think abstractly and understand the consequences of actions, according to Kenneth Warren, Ph.D., former director of the National Institute on Alcohol Abuse and Alcoholism (NIAAA).
For example, Arianna has no concept of when not to interrupt someone and no hesitation about running into a busy street- a rule that every seven year old should really know, said Magliozzi.
Judge Susan Carlson, former First Lady of Minnesota who also worked as a juvenile court referee, said in a phone interview that one affected 13-year-old Minnesotan chose to ride his skateboard on a country road one night- while wearing all black.
He was hit by a car, resulting in even more brain damage.
“A lot of these kids don’t live into middle age,” Carlson said. “I used to call it the pink elephant in the courtroom.”
Of those who do, more than half will have encounters with law enforcement. According to the National Organization on Fetal Alcohol Syndrome (NOFAS), 61 percent of adolescents and 58 percent of adults with one of the disorders have been in legal trouble. Eighty percent of adults affected by the disorders have trouble with employment.
Tom Donaldson, president of the organization, said that according to a 2009 literature review, affected Canadian individuals were found to be 19 times more likely to be incarcerated than unaffected individuals.
“Some of my favorite things to do are: play with Legos, read books, play Wii. My Nonni says I’m really good at baseball, but I can’t play on a team because it’s hard for me to follow the rules,” Nicholas said in a YouTube video posted by the organization in 2012.
Since the severity and visibility of the disorders vary so much, family members, coaches, teachers, policemen and even judges have no reason to assume that an affected individual has anything other than a discipline problem.
“So they’ll discipline in ways that discipline won’t work,” said Kathy Mitchell, a Vice President and Spokesperson at the organization.
Mitchell, a licensed professional counselor and addictions therapist, explained by phone that many rehabilitation or behavior programs use point systems to reward good behavior and punish bad behavior.
An individual with one of the disorders typically wants to please those around him or her, so they’ll readily agree to the system or sign on for the program, said Mitchell– but they would have a hard time articulating what they just signed.
Because of their impaired judgment, affected individuals may even admit to crimes they didn’t commit in order to please police or their companions, according to the organization.
Complicating the issue further is the fact that for many individuals, the worst problems really manifest after the age of 18 (when the individual is no longer in a tightly structured school environment).
According to Warren, disorders caused by fetal alcohol exposure are the leading preventable cause of mental retardation in the United States. Rates of the disorders and autism are approximately the same, he said, but unlike autism, these disorders are 100% preventable.
Unfortunately, there’s also no known cure for them- and very little research on the issue because of its stigma.
“Well-educated white women don’t want to say to a doctor, ‘Yeah, I drank some wine.’ They would much rather hear the diagnosis of high-functioning autism,” said Mitchell, who talks to many of these women when they call her organization looking for guidance when they think their child is affected.
Mitchell, who has given birth to more than one affected individual, has experienced ostracization of her own. A petition on Change.org asks that she be removed from leadership at her organization because “She is… a mother who drank while pregnant more than once.”
Because of the reluctance to disclose pregnancy drinking to doctors, the disorders are difficult to diagnose and therefore research– and they are even harder to find funding for.
According to the Centers for Disease Control and Prevention, however, one in 13 women drink during pregnancy, and the myth persists that ‘light’ drinking during pregnancy is fine.
But alcohol is a teratogen, or cell-killer, and the U.S. Surgeon General has said multiple times that there is no known safe amount of alcohol that pregnant women can consume.
Mitchell puts it much more graphically.
“Geneticists can map exactly what is forming on each day. If you dose a teratogen on that day- maybe you just happened to drink on the day the eye was forming. Would you want to give your child an eye anomaly because you just had to drink on that one day?”, she said.
Carole Brown, Ed.D., a disability policy expert at the Catholic University of America, confirmed in an email that the effects of alcohol on a fetus can be “distinctly tied to the different stages of development throughout the prenatal period.”
“For example, when eyes are being formed, alcohol may affect the anatomical aspects of the eyes… as well as vision,” she said.
Magliozzi’s voice catches as she describes what it’s like to raise two affected children.
“I pray every day that someone will come up with a way to regenerate those brain cells,” she says.