The issue of drinking during pregnancy is one that just refuses to go away. It is believed that nearly 1 in 3 women imbibe while pregnant and the American Academy of Pediatrics recently issued a recommendation that every child be screened for Fetal Alcohol Spectrum Disorders. FASD describes the range of effects in the offspring of women who drink alcohol while pregnant.
For more on this subject, we talked to Tom Donaldson, president of NOFAS, a Washington, D.C.-based advocacy organization. He will be the keynote speaker Friday at the Illinois Conference on FASD at the College of DuPage in Glen Ellyn. For more information, go to fetalalcoholconference.com or call 815-462-4273.
Q: The theme of the conference is 'The Other Spectrum' disorder. Why is there such awareness about autism but not FASD, which affects about 40,000 babies born in the U.S. each year?
A: Autism families and advocates have done an extraordinary job urging and even demanding recognition and resources. The resulting changes in clinical practice and special education, for example, have led to widespread diagnosis and treatment protocols. This acceptance and autism's significant genetic basis also free it from the same degree of stigma associated with prenatal alcohol exposure. Also, autism is usually identified by age 3 , while the effects of FASD may not be expressed until adolescence or later.
Q: Anything else?
A: Although fetal alcohol spectrum is uniformly diagnosed ... less than 20 percent of affected individuals have the full disorder. A lack of consensus on how best to diagnose others on the spectrum and challenges such as obtaining an alcohol usage history from the birth mother ... have yet to be fully overcome.
Also, there's the stigma. FASD is tied up with addiction, which is seen as a moral failing as often as it is a treatable disease.
Q: Earlier this year, health experts in Denmark said pregnant women could safely consume small to moderate amounts of alcohol. Why is this still a matter of debate?
A: The Danish study found no more behavioral problems in the 5-year-old offspring of light drinkers than they did abstainers on a few measures. Even so, the same data found light drinking was linked to an increased risk of stillbirth and other complications, and unfortunately researchers are not following the children as they age.
Still, many rushed to conclude that light drinking is safe. Alcohol is an important part of many people's lifestyle, but we know that alcohol is a teratogen, that alcohol crosses the placenta. We don't take this attitude of moderation with other toxins. ... No one would say, for example, "It's OK for a child to eat the lead paint from two windows, as long as it isn't four."
Q: What do American doctors have to say about maternal drinking?
A: The Centers for Disease Control and Prevention, U.S. surgeon general, American Academy of Pediatrics, American Congress of Obstetricians Gynecologists and others advise women who are pregnant or could be pregnant to abstain from alcohol because of the risk of birth defects. There is no known safe type or amount of alcohol during pregnancy. Leading authorities like Dr. Ira Chasnoff here in Chicago are expanding practitioner training nationally so doctors are comfortable addressing maternal alcohol use and can diagnose FASD and turn to intervention strategies when necessary.
Q: The focus is always on prevention, but what about the kids who are already here, whose neurological damage affects everything from school failure to homelessness. Is there any good news?
A: Attention to FASD is growing. The American Psychiatric Association is proposing to include disorders associated with prenatal alcohol exposure in the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5, due out next year, the American Academy of Pediatrics has endorsed a consensus statement on the diagnosis of conditions other than the full FAS, and the American Bar Association just passed an FASD resolution calling for greater training of juvenile and criminal justice personnel.
Q: What would you tell parents who are living with this disability?
A: Momentum is building, and there are resources out there. Visit nofas.org, contact NOFAS Illinois and learn as much as you can. It's a lot to ask a family coping with FASD to also be on the front lines as an advocate, but we're getting closer to a critical mass with the influence to change practices and policies that will benefit families.
Q: Why should people who do not have an affected child care?
A: Although still largely hidden, it affects us all; untold billions in costs to society, individuals who will require a lifetime of care; and perhaps most importantly, FASD can be 100 percent prevented if everyone does their part.