Quick! What is the leading cause of intellectual disabilities (mental retardation) in the United States?
A. Down Syndrome
B. Autism Spectrum Disorder
C. Microcephaly caused by the Zika Virus
D. Fetal Alcohol Spectrum Disorders
The answer is D, fetal alcohol spectrum disorders (FASD). As I pointed out in why awareness needs to be raised for FASD, more babies are affected by FASD than Down syndrome, cerebral palsy, SIDS, cystic fibrosis, and spina bifida COMBINED.
But if FASD affects so many people, why is it still relatively unheard of? Here are 5 reasons FASD is invisible.
1. Brain Damage is Invisible
Many of the effects of FASD are internal, such as damage to the brain and central nervous system. Since these are on the inside, and the differences are not visibly obvious, it can be hard to tell that there is any disability. Even in a diagnosis of full fetal alcohol syndrome (FAS), which requires 3 specific facial features, these features are often subtle and difficult to pick out before a child is 2 years old or after adolescence. Children with FASD often look similar to their peers, but that does not mean they do not have challenges.
2. Bad Behavior is Not the Real Problem
The effects of FASD may not appear physically but do often come out looking like bad behavior. Impaired judgment, difficulty understanding cause and effect, and memory problems are common effects of FASD that can lead to what looks like bad behavior. However, the behavior is often just an effect of the FASD. A child with FASD may lie because they actually cannot remember the truth. Learning disabilities and trouble focusing make school work difficult and may cause a student to be labeled “difficult”. The real problem is hidden, and the child ends up punished.
3. Still Waiting for Research
While it is known that exposure to alcohol prenatally is the cause of FASD, there are still many more unknowns. Multiple reasons contribute to the lack of research. The stigma of drinking while pregnant can cause pregnant women to not share about their alcohol use, which makes it difficult to study how drinking patterns affect prenatal development. Studies also cannot just assign some women a certain amount of alcohol to drink and none to others and see how the children are affected, as that would be highly unethical! The Centers for Disease Control and Prevention and other organizations are still in the process of putting together diagnostic criteria for FASDs other than FAS, which makes FASD difficult to study when there is no standard diagnosis.
4. No TV Show
Understanding of Down syndrome has increased with the show Born This Way, featuring young adults with Down syndrome. Mental illnesses and mental health are becoming more talked about as celebrities open up about their own struggles. FASD, however, is not often seen or discussed except on websites or Facebook pages specifically dedicated to it. However, the National Organization on Fetal Alcohol Syndrome (NOFAS) has produced some videos of people with FASD speaking about their experiences *LINK and with social media, awareness can be raised and information shared now more than ever!
The stigma of FASD, both for mothers and individuals with it, keeps it hidden. FASD is caused only one way: prenatal exposure to alcohol. The stigma, shame, and guilt of a mother can make it hard to share a diagnosis, or even seek one in the first place. Mothers are afraid to speak up. When they do, they often face judgment from doctors, teachers, and others. Stigma only keeps FASD invisible. Women need support, not stigma.
Those are just a few reasons that FASD seems to be invisible in our society. Organizations such as NOFAS work hard to shed light on FASD, and you can join them.
Here are some ways to make FASD visible in your life:
Keep Learning about FASD
Keep Listening to People with FASD
Keep Talking and Sharing about FASD