ARND: Spotlight on the Invisible End of the Spectrum
by Deb Ford
I was very pleased to see September 9th referred to as Fetal Alcohol Spectrum Disorders (FASD) Day this year, rather than Fetal Alcohol Syndrome (FAS) Day. I think it is important to include in our efforts at public awareness those kids with disorders on the less visible, but just as damaging, end of the spectrum of fetal alcohol disorders.
My 24 year-old daughter Michelle has Alcohol Related Neurodevelopmental Disorder (ARND). She was recently sentenced to 24 years in prison for her inability to figure out how to avoid and/or extricate herself from being involved in the aftermath of a senseless murder. No luck. She had never been officially diagnosed, which her lawyer and most of my family used as the rationale for not accepting that the FASD was a fact and the root cause of her seemingly irrational behavior. I finally pushed until a diagnosis was made. I found that did little to break the denial.
There was no problem confirming the consumption of large quantities of alcohol during pregnancy... I'm the birth mother. And no problem quantifying her life-long behavioral and cognitive symptoms of brain damage. But because she has a beautiful face and normal sized head, she did not qualify for a diagnosis of FAS. While ARND is essentially the 'brain damage' part of FAS, it does not have the visibility (both literally and figuratively) that FAS does.
My daughter's lawyer told me that ARND was not a defense, but that if she had FAS it would have been. I was dumbstruck. I asked him if he was aware that the definitive difference between the two was the absence of facial characteristics. He said he had not been aware of that, but it made no difference. I said, "So you're telling me that having a facial deformity is considered a legal defense for criminal behavior, but permanent irreversible brain damage is NOT????" I can't recall his reply, probably due to the fact I went ballistic at that point.
I am extremely grateful for the work of early researchers and FAS awareness advocates. Without their work, none of our kids would be getting the understanding and assistance that many receive today. The distinctive physical anomalies that sometimes occur simultaneously with the neurological damage were an early key to identification of babies affected by fetal alcohol. As the field grew and gained knowledge, it became clear that the facial anomalies need not be present in order to have severe brain damage. However, the media and most public awareness campaigns continue to focus on Fetal Alcohol Syndrome, which has excluded some of our most seriously affected kids from that understanding and assistance.
Our society puts an emphasis on physical appearance, so perhaps it is natural for people to focus on the facial features of FAS and view the other disorders as 'lesser' problems. Also, there is no doubt that the presence of distinctive physical features makes it much easier to assess and diagnose brain damage caused by fetal alcohol exposure. However, having physically visible effects, which are required for a diagnosis of FAS, does not indicate more severe brain damage.
I have had various opportunities, due to the visibility of my daughter's court case, to speak to groups and present workshops on FASD. Often when I am asked to speak to groups working with children their main interest is in learning how to identify the facial features of FAS. I explain that while this can be a useful 'shortcut' for assessing the presence of brain damage in about 10% of those affected, its application is so limited that I would rather spend my time giving them keys to detecting the possible presence of brain damage through behavior and verbal expression.
Unfortunately, many otherwise excellent videos and other materials present FAS as the primary problem, and the distinctive facial features of FAS as the primary method of assessment. ARND, if mentioned at all, is presented as one of a list of other disorders associated with fetal alcohol exposure. I would like to see us as an FASD awareness community shift the emphasis from an awareness of FAS, to an awareness of the full spectrum of disorders, with FAS being simply one of the disorders on the spectrum.
My thanks to the founders of FAS(D) Awareness Day for their steps in that direction
October 10, 2003
FAS Community Resource Center