Fetal Alcohol Syndrome (FAS) Awareness Day was first observed Sept. 9 1999. That year we rang bells all around the world. Every year since I have participated by publishing an article or speaking at an event. Today I want to spend a few moments describing what FAS is and what it is not.
My understanding of FAS comes from working beside Ann Streisguth and Sterling Clarren from the University of Washington where FAS was first defined for the AMA. I’ve also spent time with Ed Riley and am familiar with his work. In addition to my relationship with these primary researchers I was on the board of the Fetal Alcohol Syndrome Family Resource Institute for the fourteen years of its existence. The Washington State Division of Alcohol and Substance abuse provided our primary funding. For special events we received funding from other agencies impacted by the disability.
When talking about research it is appropriate to mention methodology. Over a period of fourteen years, we interviewed over seven thousand (7,000) families who were living with someone with FAS. Seven thousand is a really good base for learning about your subject. We had a standard form we filled out for each person. The form included information about diagnosis and co-occurring conditions. We asked about IQ and success in school. We asked about interventions that work.
We quickly learned that FAS is not about mental retardation. Much of our effort was spent teaching about what FAS looks like in someone with a normal IQ. Because not everybody with FAS has a low IQ and not everybody with FAS has Attention Deficits, we set about finding what everybody with FAS does have. We wanted to answer the question about what made someone with an IQ of 120 behave exactly like someone with an IQ of 63. It became obvious to us that with FAS, IQ is not the measure of success that it is for someone without brain damage.
We eventually defined what we call the core disability characteristics that everybody with FAS has. Dr. Glenna Andrews, a specialist in agenesis of the corpus callosum was able to construct a valid, reliable screening tool for FAS from our definition of the Core Disability Characteristics. We found our list of the Core Disability Characteristics to be spot-on for answering our question about why someone with an IQ of 120 acts just like someone with an IQ of 63.
Impaired Cause and Effect learning: People with FAS make the same mistakes over and over and never will learn from their mistakes without intervention
Moral Chameleon Behavior: People with FAS have problems with following an internal set of values about who they are. One young man summed it up by saying, “I am who I need to be to be with the people I’m with at the moment.”
Impaired Conceptual reasoning: This impairment begins to show up at about age eight. It manifests in an inability to manipulate concepts. We say people with FAS just don’t “get it.” Many, many parents would start an interview by saying that their child “Just doesn’t get it.” “It” being most of life.
Emotional Volatility: All parents talked about melt-downs and explosions. This seemed to be related to an inability to filter stimuli, which caused fatigue when the individual wasn’t having a rage.
Vulnerable to co-occurring conditions: Individuals with FAS have an alphabet soup of diagnoses including autism, bipolar, health impaired, depression, ADD, ADHD. Not all people with FAS have all those diagnoses so they cannot be used to describe FAS and not all people who have those diagnoses were prenatally exposed to alcohol. We recommended that students with FAS should qualify for Special Ed services under Health Impaired.
I often hear someone say, “I drank with all my children and there is nothing wrong with them.” I heard this from the mother of a juvenile delinquent who was living on the streets, using drugs and participating in gang activity. I’ve heard it from mothers whose children appeared successful except for having been married three times. I’ve heard it from people who admit to always being broke despite making a good wage. Not all failures in life are due to prenatal exposure to alcohol. Still, I have to wonder what would our country look like if we were completely free from the effects of prenatal exposure to alcohol.
For more about FAS*FRI, access to FASTimes online, or Glenna Andrew’s screening tool visit, http://www.fetalalcoholsyndrome.org/index.php/page/fas