Fetal Alcohol Spectrum Disorders Fifty Years Later

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by

GuidaBrown
in

September is Fetal Alcohol Spectrum Disorder (FASD) Awareness Month, which was identified FIFTY years ago, and FASD United, the “National Voice [in the US] on Fetal Alcohol Spectrum Disorders” has asked that we take each week of the month to actively participate in bringing awareness about FASDs to others. (FASDUnited.org)

Week one was to be the week to learn about FASDs, and FASD United gave many ideas about what we could learn, among them: learning how to issue a proclamation to bring awareness to FASDs; learning how to advocate for the FASD Respect Act; learning what those with FASDs know and need. And these are all great aspects to learn for those who already know about FASDs.

However, I fear that the problem is bigger than this. FASD United does a wonderful job of getting the word out to those who have a basic understanding (or more) about FASDs, and the website is chock full of great information, so please do visit it! Still, since FASDs are severely underdiagnosed, that seems to point to the idea that we’re not paying enough attention to them, so we may need learning that is even more basic.

So here’s my two cents. Please help spread the word!

  • Fetal Alcohol Spectrum Disorders affect as many as 1 in 20 children in the US (MarchOfDimes.org). Think about that: it’s a little more than one child in every classroom.
  • “There is NO KNOWN SAFE AMOUNT OF ALCOHOL use during pregnancy or while trying to get pregnant,” according to the Centers for Disease Control and Prevention, but the emphasis is mine. (https://www.cdc.gov/ncbddd/fasd/alcohol-use.html)

None. No safe amount during the first trimester. No safe amount during the second trimester. No safe amount during the last trimester. As an FYI, the World Health Organization (WHO) is now indicating that there is actually no known safe amount of alcohol use – period. In January, WHO reported in the Lancet, that “There is no safe amount that does not affect health.”

  • Alcohol is alcohol, and that “no safe amount” refers to any kind of it: liquor, beer, wine…it’s all the same, and it’s all harmful. When speaking to youth, I have props to help me explain the answer to “Which drink has more alcohol in it: a shot, a regular name-brand beer, or a properly-poured glass of wine?” The answer is that they all have the same amount of alcohol in them. The props I use are a wine glass, a shot glass, and an empty beer bottle. I fill them all with water and ask the question. Then, by way of illustration, I drip one drop of food coloring into each container. The food coloring is the alcohol…it doesn’t matter how much LIQUID is in the container; the amount of alcohol is the same for each. A drink is a drink is a drink.
  • Only about 10% of those with a Fetal Alcohol Spectrum Disorder have the facial dysmorphia that typically characterizes Fetal Alcohol Syndrome (FAS). (https://www.shaap.org.uk/)
  • So out of 200 hundred children with an FASD, one will likely have FAS. So what is happening to the other 199? They aren’t being diagnosed with FAS because they don’t have the facial dysmorphia that typically characterizes it. What ARE they being diagnosed with? Well, instead of telling you that they are being MISDIAGNOSED and instead treated for ADHD, ADD, ODD, or a handful of other disorders (https://www.embracedmovement.org/signs-of-fasd), I’m going to say that the better question is:

“What COULD they be diagnosed with?” For those who don’t have the facial dysmorphia that would indicate a diagnosis of Fetal Alcohol Syndrome (FAS), they can be diagnosed with Alcohol Related Birth Defects (ARBD), partial Fetal Alcohol Syndrome (pFAS), Alcohol-Related Neurodevelopmental Disorder (ARND), or Neurodevelopmental Disorder with Prenatal Alcohol Exposure (NDPAE). (https://www.aap.org/en/patient-care/fetal-alcohol-spectrum-disorders/common-definitions/)

  • Doctors in the US do NOT need to know about prenatal alcohol exposure to diagnose FAS.

That is, the facial dysmorphia that typically characterizes FAS, as well as the other indicators, are enough for a trained doctor to make a diagnosis of FAS. And that’s a good thing!

  • So why are so many going without a diagnosis? Because in the US, doctors DO have to know about prenatal alcohol exposure in order to diagnose one of the other disorders related to it. The bad thing is that we don’t have enough of those trained doctors. And, since in the US a diagnosis of ARBD, pFAS, and so on must have indication of prenatal alcohol exposure, the wall of stigma is difficult to overcome.

So that’s where I’ll leave this…and I’ll pick up next time with how we can break down that wall! In the meantime, I’d love your comments. Did you learn anything? What would you like to learn more about on the topic – or on any topic?

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