Fetal Alcohol Spectrum Disorders: What You Need to Know

I’m fresh out of the 9th International Research Conference on Fetal Alcohol Spectrum Disorders, and my mind is reeling from the information I learned or relearned. 

For example, 

• Weighted blankets are nice, but they won’t cure Fetal Alcohol Spectrum Disorders, which is probably fine, since so few individuals get diagnosed in the first place. 
• Approximately 5% or 1 in 20 — as in 1 child in every classroom — in the US has an FASD.
• Approximately 80% of those in the US with FASDs get either no diagnosis or an inaccurate one.
• Because there’s such a dearth of diagnostic centers, if someone does get a diagnosis, and that’s a huge IF, there are few services to offer assistance, thus the suggestion of a weighted blanket. 

• There are currently a grand total of NINE diagnostic centers in the US.
• Up to 17% of adoptees have an FASD.
• 23-36% of those in the juvenile justice system have an FASD.
• 10-17% of those in the adult justice system do.
• 20-25% of those diagnosed with ADHD likely actually have an FASD.
• Fetal Alcohol Syndrome with sentient facial features, dysmorphia, occurs in only about 10% of cases of FASDs. 
• A bunch of doctors published a paper last year in The Lancet suggesting that FASDs be labeled instead as, perhaps something like “neurodevelopmental disorder,” despite the fact that, as indicated earlier, about 10% of those with the neurodevelopmental disorder of ADHD are already misdiagnosed. (See this link for a better rebuttal than anything I could ever write. Addressing the Recommended Changes to FASD Diagnosis Published in The Lancet – FASD United.)
• The US doesn’t see FASD as a diagnosis; rather, a person has an FASD — meaning the person has one of the umbrella diagnoses, such as ND-PAE or ARND. (Common Diagnostic Approaches in Fetal Alcohol Spectrum Disorder) Other countries, however, use “FASD” as a diagnostic term, as in “He has FASD.” It’s confusing, to say the least.
• The US uses the DSM-5-TR (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision) to diagnose and classify mental disorders, but the DSM only identifies Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) as a diagnosis. No Alcohol-Related Neurodevelopmental Disorder (ARND), Fetal Alcohol Syndrome (FAS) and Partial Fetal Alcohol Syndrome (PFAS), nor Alcohol-Related Birth Defects (ARBD). I get it. Different systems…sorta. 
• “ICD codes, or the International Classification of Diseases, are a standardized system used to classify diseases, injuries, and causes of death, developed by the World Health Organization (WHO),” but the version currently used, ICD-10, has codes only for Fetal Alcohol Syndrome with dysmorphia or “newborn affected by maternal use of alcohol.” But, not to worry, some diagnosticians interpret this to mean “people affected by maternal use of alcohol.” But some diagnosticians don’t. And some states have indicated they can’t because “newborn” means, well, “newly born,” despite the fact that a newborn without the sentinel facial features (dysmorphia) but with other effects of maternal use of alcohol has an excessively slim chance of being diagnosed. 
• Great news is that the ICD-11 codes actually have both “Fetal Alcohol Syndrome” and “FASD without sentinel facial features,” which means a person of any age could be thus categorized 
• Just kidding. Evidently it costs too much for healthcare systems to update the ICD codes, so even though ICD-11 was rolled out in 2022, we shouldn’t expect to see it before 2027. (https://icd.who.int/en/docs/icd11factsheet_en.pdf) Still, it’s something. 
• This: https://www.cia.gov/the-world-factbook/field/median-age/country-comparison/ It’s not really relevant to FASDs, and I’m not sure how I surfed into it, but I’m positive there’s information to be mined regarding countries where the median age is before the frontal lobe is fully formed. 
• Choline. Choline. Choline. We know it mitigates the effects of prenatal alcohol exposure. Now we need help getting it to the right babies. Eli Lilly, I’m looking at you!

I’m trying not to be disheartened. I really am. But this is a lot… And the FASD world needs more people from all walks of life to be involved: healthcare, including mental health; education; in home care; out of home care; corrections… There is nowhere that FASDs aren’t showing their effects. What will you do to help?