She answered, “A lot of the ones I’ve dealt with have FAS, but they get an autism diagnosis because the kids can get services for that diagnosis and there is no money for FAS.”
It is common enough for someone with Fetal Alcohol Syndrome (FAS) to have a diagnosis of autism that Vicki’s observation is very probably correct. This brings up the question of how common is brain damage due to prenatal exposure to alcohol.
Back in the ‘90’s we were counting three in one thousand live births as having the full Fetal Alcohol Syndrome or Fetal Alcohol Effects. Ann Streisguth PhD called those diagnosed the tip of the iceberg. Today, I want to talk about the rest of those who were exposed. This is what Ann Streisguth PhD called the bottom of the iceberg, the mass of people prenatally exposed to alcohol who don’t get a diagnosis.
I have long suspected that any numbers we throw around are way low. For example, the CDC tells us that twenty-three percent of American women still drink when pregnant. That means that about twenty-three percent of live births have a history of exposure. Folks, that is one in five children who are prenatally exposed to alcohol. They don’t all have FAS, no, of course not. It is possible that for some of those children the mother was able to metabolize the very small amount of alcohol she drank (a few sips of champagne at her sister’s wedding.) For some of those children, the dosage was small enough and infrequent enough that the damage was not perceptible. Remember, someone does not have to be an alcoholic to produce a child with brain damage. Ann Streisguth was able to demonstrate that children of social drinkers had measurable damage, but the children were not diagnosed with anything because the damage wasn’t severe enough.
Why don’t people get a diagnosis when they have been prenatally exposed to alcohol? Is it that they don’t have brain damage? No. Dr. Streisguth talked about those who just have a little more trouble in some areas of life than should be expected when other factors such as poverty and social class are accounted for. These are the people who are smart enough, but get average grades in school. These may be the kids who have trouble in math or catch every virus that goes around or can’t eat most food set before them. These are the kids who must pee on the electric fence themselves before they learn. They just make more mistakes than their peers.
I don’t know how many times someone has challenged me and my career choices by saying, “I drank with all my pregnancies and there is nothing wrong with my kids.”
I usually return a non-committal answer and walk away thinking, “Oh, that is why her daughter is living on the streets and taking drugs, and the other one is in jail.” Even when their children are not having obvious serious trouble, I nod and remember their child’s problems with boundaries, role expectations, reciprocal play, and poor judgment. These kids don’t come to the attention of professionals, but they do not quite “get” life.
Recently, my husband was agonizing over the poor financial choices of one of his clients. The client didn’t follow Hubby’s advice and squandered millions of dollars. The third time Hubby said, “He just doesn’t get it.” I finally heard what he was saying about poor money management, trouble with siblings and a general inability to cope with adult life. I asked a few questions and finally learned that, yes, Mom had been a social drinker. She had no idea back in the ‘50’s that alcohol could harm a child. This client most probably was a member of the bottom of the iceberg.
Some people seem to think that the trouble people with brain damage get into is normal. No, there is something wrong when middle class children end up on the street or in jail. Although, some of our birth-moms in the FAS*FRI project told us that for their heavy drinking family, poor school performance, living on the streets trouble with the law, and being unable to keep a job is normal for their family. Fetal Alcohol Spectrum Disorders do run from generation to generation in families as long as the exposure exists. Some people don’t get a diagnosis because the behaviors associated with brain damage are considered normal in their family or community.
When I first started working in the field of FAS, ninety-three percent of the clients diagnosed at the University of Washington came from adoptive and foster homes. Was this because birth families see the FAS behaviors as normal or were the alcoholic mothers unable to care for their kids. The answer is a little bit of both.
One of my job challenges with the Fetal Alcohol Syndrome Family Resource Institute was finding a doctor willing to make the diagnosis. Back then, very few doctors felt that they knew enough about the disability to make a diagnosis. Patients still need to actually go looking for a doctor who is willing to diagnose, and they need their written history of exposure, school pictures, health history and evidence of brain damage before they go to the doctor.
Some people do not get a diagnosis of FAS/D because they have a normal or high IQ. Low IQ may indicate brain damage, but it is not a core characteristic of the brain damage associated with prenatal exposure to alcohol.
The characteristic brain damage caused by prenatal exposure to alcohol inhibits the brain’s ability to communicate between the two hemispheres. Thus, we have people who are smart enough, but they don’t get why someone’s feelings are hurt. They don’t get why some behaviors are not consistent with their religious beliefs or their political beliefs. The inability to think critically with the whole brain leaves individuals vulnerable to manipulation and wondering why their friend betrayed them.
Finally, family wealth may be able to cover-up the challenges some people face. Life is easier for everyone if you can hire help or at least a math tutor. The son of a well-respected community member is not going to face the same legal consequences as the son of a laborer will face. Wealth can buy more education for the challenged son. Wealth can buy private alcohol and drug treatment. Wealth can buy a job for the challenged family member. Wealth can buy marital stability.
The problem with the lack of diagnosis among those who represent the bottom of the iceberg is that society underestimates the human and financial costs of prenatal exposure to alcohol. We have no idea of the lost human potential. We have no way of knowing how this impacts productivity. We do know about road rage, school shootings, random violence, racism, people who cannot make choices in their own best interest, diabetes, heart disease, special education, divorce, domestic violence, prison costs, poor business ethics, and the list goes on. How much of what we see is due to prenatal exposure to alcohol? We will never know.
We do know that just because the damage isn’t easily measured, it hasn’t gone away. We do know that family norms do not mean there is no damage. We do know we can compensate and cover-up for the damage, but it won’t go away. We know that society has some challenges. Some of those challenges are most certainly due to prenatal exposure to alcohol.