Understanding fetal alcohol spectrum disorders
Friday, October 9th, 2009
By: Maiken Scott
mscott@whyy.org
Singing, coloring, circle time – most kids are happy in preschool. But for children with fetal alcohol disorders, this is often the first place where they fail, getting labeled as lazy or difficult. As many as one in a hundred children are affected – yet the condition remains misunderstood and misdiagnosed.
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When a mother drinks alcohol during pregnancy, it reaches the fetus via the umbilical cord, potentially harming the developing baby's brain. In severe cases, prenatal alcohol exposure can lead to intellectual disability, distinct facial features with eyes set far apart, and small stature. This is what's commonly called Fetal Alcohol Syndrome. But experts say alcohol exposure can lead to a spectrum of disorders that vary in severity and symptoms:
Dubovsky: So what it does really is it affects behavior, it affects the way the brain processes information.
That's Dan Dubovsky, a mental health professional who educates people about the life-long effects of alcohol exposure in the womb. (FASD Specialist SAMHSA FASD Center for Excellence)
Dubovsky: so even if somebody is very bright, they have difficulty following three directions at once, and that has to do with the damage the alcohol causes to working memory and short term memory, which is what we use on a regular basis.
Even preschoolers need to be able to process several instructions at once. For example: get a crayon, grab a piece of paper, sit down, and draw a circle:
Charlie Tracy is an adorable three year old with a sweet smile – but he is clearly not enjoying dot-painting in his Chestnut Hill classroom (Charlie goes to United Cerebral Palsy of Philadelphia)
Charlie: I don't want to – you don't want to sit down, then stand up, we have to do thisCharlie has a therapist with him who coaches him through the different activities:
Liquori: My name is Jennifer Liquori Young and I'm an occupational therapist – some of his goals are just to follow the classroom routine, which includes snack time, writing, cutting, blocks.
Charlie's parents, Lynne and Gerald Tracy, knew Charlie had Fetal Alcohol spectrum disorder when they adopted him from the central Asian republic of Kazakstan. There's been a learning curve. Outbursts got Charlie expelled from two childcare centers. Charlie's dad, Gerald Tracy:
Tracy: He either knocks everything over, or pulls everything down he could reach, or worse still is the head banging, where he would just bang his head off of anything he could get to, and he could literally go at a full gallop into a wall.
Now, with help, Charlie does better and gets less frustrated. But many kids with the syndrome don't benefit from some of the breaks Charlie has received: involved parents, early diagnosis and consistent therapy.
Dubovsky says most settings – from school to sports to work – assume that people can process simple instructions. And that, he says, is exactly what children with Fetal Alcohol Syndrome can't do:
Dubovsky: We just set them up to fail over and over again, by expecting them to do things that they are not able to do.
Earlier diagnosis would help. Behavioral health centers in this region are stepping up efforts to screen for fetal alcohol disorders. Linda Bamberger is director of children's services at COMHAR – a Philadelphia human services organization. She says screening kids whenever there's a chance they were exposed to alcohol in the womb could help therapists find the right path:
Bamberger: just the fact that they know there is a reason why kids are not responding to traditional behavior interventions helps them to refocus their goals
The city of Philadelphia wants to send a strong message to pregnant women:
Schwartz: No amount of alcohol is safe during pregnancy in terms of potential effects on a fetus.
Don Schwartz is the city's health commissioner – he says Fetal Alcohol Syndrome is the only birth defect that is 100 percent preventable – but too many pregnant women have been misled into thinking that drinking in moderation is OK.
The Tracys want to help spread the word. They say because of the stigma associated with these disorders, most parents stay silent. And this silence, says Gerald Tracy, prevents other kids with Charlie's challenges from getting the right treatments.


With early diagnosis, early intervention and parents who are willing to sacrifice their own lives to give the 24/7 support and protection it takes to keep these children safe, it is possible for some of them to survive on their own when they reach adulthood…..but, without it, the struggles and horrors they face are unimaginable to the average person. Look to Texas and the trial of Paul Devoe for the latest "newsworthy" example of what can happen to a child with FASD who is undiagnosed and raised by parents who haven't the faintest clue of what is wrong with them. To those of us who care for children/individuals with FASD, Devoe's childhood of being locked(along with his brother)in a room every day as "punishment" by his step-father for their behavior is a story that is all too familiar….as is his history of unacceptable behaviors, problems at school and his involvement with the law….as is the judgement by the doctor/psychiatrist who talked to him for only 2 hours that he "had no conscience", would repeat his bad behaviors and, therefore, deserved to die. The public howls for Devoe's execution, while giving not the slightest credence to expert testimony about FASD and the impulse control disorders caused by the brain damage….and every one of us out here knows that, with just one mistake….with just one lapse in that 24/7 supervision…. it could be us….it could be our own child…..facing that angry mob. Early diagnosis and intervention are important….but education and prevention are vital…and my own experience has been that the alcohol industry fights this in every way they can. Not only do they fight warning labels on the alcohol itself….they fight warning signs for pregnant women at points of sale….and are quietly backing the passage of laws, disguised as laws "to protect the small business owner against frivolous lawsuits" that carry language preventing lawsuits resulting from "legally manufactured products that were willingly consumed" in order to protect themselves from the same fate as the cigarette companies in the future. The cold hard reality is that we can expect no help from our elected officials in our goal to educate the public about FASD either….my local Rep's DUI arrest is shown on TV every time he runs for re-election…..and my State Senator is the#2 Senator accepting funds from the Alcohol lobby(funds required by law to be reported, that is).
IT IS CRITICAL THAT MORE INFORMATION AND EDUCATION BE AVAILABLE TO THE AMERICAN PUBLIC. OTHER COUNTRIES ARE FAR AHEAD OF US IN UNDERSTANDING FASD AND WORKING ON DIAGNOSIS AND TREATMENT FOR INDIVIDUAL'S IMPACTED. THE CDC AND SAMSA ARE ALL INVOLVED IN EDUCATION AND SUPPORT PROGRAMS.
IS THERE ANY WAY TO PLAN FOR NATION-WIDE PROGRAMING NEXT "INTERNATIONAL FASD AWARENSS" DAY ON 9-9-10?