September ninth is Fetal Alcohol Syndrome Awareness day so I will be writing a couple articles on that topic. Fetal Alcohol Syndrome (FAS) is a specific medical diagnosis for fairly disruptive symptoms that occur when a woman has consumed alcohol while pregnant. The facial features that are necessary to get a diagnosis form in the third week of gestation, some women may not know they are pregnant at this point. Because the diagnosis is so dependant on the facial features that have no relationship to the overall amount of damage to the child, researchers and advocates like to talk about Fetal Alcohol Spectrum Disorder (FASD) as the more descriptive term
The amount and type of damage done when a woman drinks during pregnancy depends greatly on when she drank and how her body and the baby’s body process alcohol. If a woman drinks while pregnant, the alcohol will disrupt whatever is happening while the alcohol is in the baby’s body. The disruption may not be easily measurable later in life, but it will happen. The project I worked on developed a fairly sensitive phenotype for identifying the damage.
Remember, there is no magic that will alter the biochemistry between alcohol and the developing baby, and the damage may occur before the mother suspects that she is pregnant. For this reason, my colleagues and I developed the slogan “Women of childbearing years who drink alcohol must be on a reliable form of birth control.”
My project with FAS was working with the team at the Fetal Alcohol Syndrome Family Resource Institute. Our main focus was to help connect families to the resources they needed. When we started, nobody had any idea what resources families needed, so we set out to define what families need at each developmental stage. Over the fourteen years we worked on this project, we interviewed roughly seven thousand families living in the US and Canada.
Out of this project, we discovered some common behaviors among those with the disability that were present whatever the IQ and whether or not the facial features were present. We came to recognize the behaviors very early in the project, which led to one of our funny stories.
Dr. Sterling Clarren was the primary researcher on FAS at the University of Washington. He is quite internationally famous in the field. For his research, he needed patients with the disability. He had some silly notion that he wanted to be the one to diagnose his patients. We were quite willing to let him do the official diagnosis, but when we sent someone to him, we instructed our clients on how to make up a packet of the information they would need to get a diagnosis. Finally, Dr. Clarren caught up with us at a state function and complained that he was giving everybody we sent to him a diagnosis, and admonished us to stop screening people. We really were not aware that we were screening people, but the incident taught us that we were seeing a set of common behaviors unique to FASD. Eventually, Dr. Glenna Andrews, a specialist in agenesis of the corpus callosum, used our behavioral profile to develop a behavioral phenotype for FAS that accurately (.01 level) identifies FASD and separates it from other causes of agenesis of the corpus callosum.
Those of us who have lived and worked with individuals with FASD recognize the phenotype easily. My daughter having grown up in our home with a foster sister who had FAS often babysat for other families raising kids prenatally exposed to alcohol. As an adult, she offered to stay with a friend’s daughter while the couple celebrated their wedding anniversary. She assumed that the reason the couple couldn’t get a sitter was that they were new in town and didn’t know anybody. She says she quickly realized she was relating to this child as if the child had alcohol related brain damage. This was confusing because these parents didn’t drink. When the couple arrived home Melanie didn’t say anything about their daughter’s behavior and assured them everything was fine. The couple expressed their relief that all had gone well and explained that their daughter was really their niece who they adopted because her mother had alcohol problems. They ascribed her behaviors to adoption issues. Melanie left their home thinking, “That was it.”
Recognizing the unique “don’t get it” behaviors of FASD is important because it gives us an idea of the pervasiveness of this disability. Remember if the mother does not drink during the third week of gestation her child will not have the facial features even if she stays drunk for the rest of the pregnancy, so official numbers are low when facial features are used to count cases. The exposed child may not have the facial features to get a FAS diagnosis, but they will certainly have the behavioral features. Those behavioral features will be present even if mom drank socially during pregnancy.
Ann Streisguth PhD, the mother of FAS research, demonstrated the effect of social drinking on the developing baby by identifying a characteristic pattern of reading, spelling and math scores. With our recognition of the behavioral phenotype, we could identify which students would have the characteristic test scores, which offered us another validation that we did have a behavioral phenotype.
Now, as I try not to be involved in the tragic world of FASD, it still jumps out at me through the media. Sometimes, I see stories about someone who just doesn’t get it. Sometimes, someone who is really successful in one area of their life attracts my attention, because despite their success, their ethics are messed up. They don’t get it. I still find that our phenotype allows me to identify people who will never understand the consequences of their actions, who are easily manipulated and will follow the moral path of those around them despite their professed belief in a different moral system. Our behavioral phenotype is spot on and tells us that this disability is far more pervasive than the official numbers indicate. I’ll cover that topic next week.
The amount and type of damage done when a woman drinks during pregnancy depends greatly on when she drank and how her body and the baby’s body process alcohol. If a woman drinks while pregnant, the alcohol will disrupt whatever is happening while the alcohol is in the baby’s body. The disruption may not be easily measurable later in life, but it will happen. The project I worked on developed a fairly sensitive phenotype for identifying the damage.
Remember, there is no magic that will alter the biochemistry between alcohol and the developing baby, and the damage may occur before the mother suspects that she is pregnant. For this reason, my colleagues and I developed the slogan “Women of childbearing years who drink alcohol must be on a reliable form of birth control.”
My project with FAS was working with the team at the Fetal Alcohol Syndrome Family Resource Institute. Our main focus was to help connect families to the resources they needed. When we started, nobody had any idea what resources families needed, so we set out to define what families need at each developmental stage. Over the fourteen years we worked on this project, we interviewed roughly seven thousand families living in the US and Canada.
Out of this project, we discovered some common behaviors among those with the disability that were present whatever the IQ and whether or not the facial features were present. We came to recognize the behaviors very early in the project, which led to one of our funny stories.
Dr. Sterling Clarren was the primary researcher on FAS at the University of Washington. He is quite internationally famous in the field. For his research, he needed patients with the disability. He had some silly notion that he wanted to be the one to diagnose his patients. We were quite willing to let him do the official diagnosis, but when we sent someone to him, we instructed our clients on how to make up a packet of the information they would need to get a diagnosis. Finally, Dr. Clarren caught up with us at a state function and complained that he was giving everybody we sent to him a diagnosis, and admonished us to stop screening people. We really were not aware that we were screening people, but the incident taught us that we were seeing a set of common behaviors unique to FASD. Eventually, Dr. Glenna Andrews, a specialist in agenesis of the corpus callosum, used our behavioral profile to develop a behavioral phenotype for FAS that accurately (.01 level) identifies FASD and separates it from other causes of agenesis of the corpus callosum.
Those of us who have lived and worked with individuals with FASD recognize the phenotype easily. My daughter having grown up in our home with a foster sister who had FAS often babysat for other families raising kids prenatally exposed to alcohol. As an adult, she offered to stay with a friend’s daughter while the couple celebrated their wedding anniversary. She assumed that the reason the couple couldn’t get a sitter was that they were new in town and didn’t know anybody. She says she quickly realized she was relating to this child as if the child had alcohol related brain damage. This was confusing because these parents didn’t drink. When the couple arrived home Melanie didn’t say anything about their daughter’s behavior and assured them everything was fine. The couple expressed their relief that all had gone well and explained that their daughter was really their niece who they adopted because her mother had alcohol problems. They ascribed her behaviors to adoption issues. Melanie left their home thinking, “That was it.”
Recognizing the unique “don’t get it” behaviors of FASD is important because it gives us an idea of the pervasiveness of this disability. Remember if the mother does not drink during the third week of gestation her child will not have the facial features even if she stays drunk for the rest of the pregnancy, so official numbers are low when facial features are used to count cases. The exposed child may not have the facial features to get a FAS diagnosis, but they will certainly have the behavioral features. Those behavioral features will be present even if mom drank socially during pregnancy.
Ann Streisguth PhD, the mother of FAS research, demonstrated the effect of social drinking on the developing baby by identifying a characteristic pattern of reading, spelling and math scores. With our recognition of the behavioral phenotype, we could identify which students would have the characteristic test scores, which offered us another validation that we did have a behavioral phenotype.
Now, as I try not to be involved in the tragic world of FASD, it still jumps out at me through the media. Sometimes, I see stories about someone who just doesn’t get it. Sometimes, someone who is really successful in one area of their life attracts my attention, because despite their success, their ethics are messed up. They don’t get it. I still find that our phenotype allows me to identify people who will never understand the consequences of their actions, who are easily manipulated and will follow the moral path of those around them despite their professed belief in a different moral system. Our behavioral phenotype is spot on and tells us that this disability is far more pervasive than the official numbers indicate. I’ll cover that topic next week.
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