Fetal Alcohol Spectrum Disorders Awareness

International FASD Awareness Day has been recognized every year on September 9th since 1999. Furthermore, the entire month of September is dedicated to expanding FASD Awareness worldwide. There are many misconceptions and myths about FASD that it’s no wonder we spend every September continuing to increase consciousness about this disability.

There will be opportunities to participate in events right here in Monroe County. On Wednesday, September 11th at 7:00 PM, the Town of Brighton will be making a formal proclamation in acknowledgement of Fetal Alcohol Spectrum Disorder Awareness Month at the start of their board meeting. Additionally, the 4th annual Run FASD & Family Picnic is Sunday, September 8th in Spencerport.

Fetal Alcohol Spectrum Disorders

The term fetal alcohol spectrum disorders (FASD) refers to a range of physical, behavioral, and cognitive disabilities that occur in a person who was exposed to alcohol during gestation (also known as prenatal alcohol exposure). There is no cure. It is actually much more common than other well-known disabilities such as Autism Spectrum Disorder, Cerebral Palsy, Down Syndrome, and Tourette’s Syndrome. In fact, studies show that FASD may affect as many as 1 in 20 Americans, but it is highly mis- and under-diagnosed. There are several key reasons for this.

1. Stigma and shame – There is a belief that children with FASD are only born to mothers who are alcoholics; selfish women who drank during their whole pregnancies, and who don’t care about the health of their babies. The reality is that no amount of alcohol consumption during pregnancy has been proven safe and that most women who consumed alcohol during pregnancy drank early on before they realized that they were expecting, and then stopped when they learned that they were pregnant. Moreover, a common sentiment among women is that any alcohol consumed before they knew they were pregnant “doesn’t count” and so many parents don’t even consider the possibility of this diagnosis for that their children.
2. Facial features – Another common but inaccurate belief is that you can tell that someone has FASD by looking at them; that individuals with FASD have a particular appearance. The truth is that only 10% of individuals with FASD have the facial features associated with the disorder. Part of the diagnosis process is a lot of measuring different parts of the body by a qualified physician. But those features that they are looking for, like the disability itself, can be present on a spectrum. This means that individuals with FASD may have some degree of the facial features, but not enough that you can simply tell immediately by looking at them; and that 90% of people with FASD do not have any of the associated facial features at all.
3. Imitation and comorbidity – The symptoms of FASD mimic and can easily be confused for other disabilities. These symptoms can include – but are not limited to – impulsivity, executive dysfunction, self-stimulating behaviors, attention deficit, inability to self-regulate, dysmaturity, issues with memory, anxiety, hyperactivity, depression, developmental delays, defiance, issues with balance and coordination, and lying/confabulation. Any number of these symptoms are also associated with different disabilities such as Attention-Deficit/Hyperactivity Disorder, Oppositional Defiance Disorder, Post Traumatic Stress Disorder, Pathological Demand Avoidance, Autism Spectrum Disorder, or Bipolar Disorder. To further complicate things, there are comorbidities associated with FASD. Comorbidities refer to medical conditions that one can have in addition to a primary diagnosis. Individuals with FASD can be affected by a wide range of mental and physical health challenges that add a level of complexity to their disability and can make pinpointing the FASD diagnosis that much more evasive, especially if parents don’t even consider exploring that avenue.

Resources

Fetal alcohol spectrum disorder may sound intimidating but the Rochester area (and beyond) has a strong support network for families.

• The Mt. Hope Family Center has an FASD Diagnostic and Evaluation Clinic and hosts an FASD Family Night Program. Parents not only learn strategies for best supporting and advocating for their child’s needs but they also gain the camaraderie of other families who understand the challenges they are facing and are informed of clinical research and political activism opportunities related to FASD.
• There is also a Western NY branch of National Council on Alcoholism and Drug Dependence (NCADD) which runs a virtual, monthly FASD Parent Networking and Support Group.
• New York State offers a Fetal Alcohol Spectrum Disorder (FASD) Workgroup with the mission of examining state laws to determine how to make a positive impact towards the goals of eliminating alcohol use during pregnancy and improving the lives of New Yorkers affected by prenatal alcohol exposure.
• FASD United is an incredible organization which holds an international FASD Conference annually, hosts the Red Shoes Gala benefit, provides ideas for FASD Awareness month activities, gives information about current research opportunities, provides resources for caregivers and educators, and more!

If you think your child may have FASD, don’t let guilt or shame stop you from learning the truth. Get your child evaluated as soon as possible. The earlier the diagnosis, the sooner you can start taking advantage of the resources available to support your family and your child’s success. As with any disability, your child is more than just their diagnosis/diagnoses. This is not the end of the road. This is just the start of a new journey. Kids with FASD can grow up to be adults with FASD who lead meaningful, productive, and joyful lives.

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