The knowledge of what prenatal alcohol exposure can do is growing. The issue is it isn’t always growing with facts. I challenge all of you to ask one person in your life what FASD is. Ask them to tell you what it means to have FASD. So FASD is Fetal Alcohol Spectrum Disorder. It is not a diagnosis in itself but the umbrella over the diagnoses. So someone doesn’t have FASD. They would either have FAS (Fetal Alcohol Syndrome), pFAS (partial Fetal Alcohol Syndrome), ARND (Alcohol Related Neurodevelopmental Disorder) or ARBD (Alcohol Related Birth Defects) or the new ND-PAE (Neurodevelopmental Disorder related to Prenatal Alcohol Exposure). There is a whole lot of explanation behind each of those diagnoses. They all have a list of things that must be present in order to diagnose them. The fact is that they all come back to the neurodevelopmental issues that are caused by prenatal alcohol exposure.
So that being said there is so often a misconception of what that means. While it is true that FASD is the leading cause of developmental disabilities in the Western Hemisphere most people who have FASD are not developmentally disabled under the current guidelines. Actually less than 20 percent of people who have FASD will qualify for DD services as adults even though 97% of people with FASD will need supportive services of some kind. This leaves a gap in services between the 2 of about 77%. So let’s look at another number. There is a huge discrepancy in the studies of how many people with FASD are in prison but the percentages range from 40-80 percent of those incarcerated have FASD. I think that this number will never be accurate until we start actually looking at those being sentenced a lot more closely. However, if we look at it from the perspective of what is happening to those who are not receiving DD services it does speak to the fact that many of them are ending up incarcerated. Hmmm. So often it is because they fall into a sink hole of life. Usually it is just because they make a mistake and with the way our world is we don’t have any other way of dealing with this. If there were programs to help people instead of just locking them up we could turn so much of this around and also save a great deal of money in the process. I think that the human cost is the most important but when we speak to people in the governing body the dollar is going to get the most attention.
We also have to realize that at this time we know that FASD is hugely underdiagnosed. The issue comes down to being able to prove that a person has been prenatally exposed. How often is this known? Often if the person is an adult they may not know. If they were adopted the adoptive family may not know or may suspect but just not have enough proof for a diagnosis. That being said even if there is access to the birth mother often she may feel very uncomfortable talking about her possible drinking during pregnancy due to the judgmental attitudes. The fact is that it isn’t just people with addictions it is anyone who might have been drinking even socially before knowing they were pregnant or perhaps they have been misinformed and didn’t understand the damage that could be done. So we have to change the way we approach asking about this. If it can be done without judgment and in a more informational gathering way then truthful answers are more likely to happen. Often though no one is even asking those questions.
The knowledge of what FASD entails is important. When we go back to the disability thoughts this is what we have to consider. People who are “higher functioning” are so often misunderstood. I remember a teacher telling me that “R” couldn’t have FASD as she can read. Hmmm….I have studied and researched for 17 years and never found a requirement of not reading as part of the diagnostic process. It is so hard as when tested “R” does exceptionally well but this is misleading of her ability level. The only test that really helps to determine where someone is needing help is to get a functional ability test done. The best is the Vineland. This gives where the person is actually functioning. I love it because it gives an age equivalent in different areas like language, social and coping skills. The age helps a parent or other caregiver to understand what to actually expect of that person or also how to change how something is presented to them.