GLOBAL CONCERNS OF FASD
There are still few services for people with FASD. Why is this when we’ve known about it for centuries? I’ll present some
- global findings,
- trends in Hawaii, and
- what the data is suggesting.
World Health Organization: FASD is a Global Public Health Concern
They found the following:
- Alcohol use, including binge drinking, during pregnancy is increasing and
- ~50% of pregnancies were unplanned
Hawaii tends to mirror this trend with 4.8% women reporting drinking during pregnancy in 2000 to 8.7% in 2015.
And in Hawaii the percent of unplanned pregnancies increased from 45% in 2008 to 50% in 2015.
- not all countries conducted studies or conducted so few studies they could not be included in their analysis.
- Only women who admitted to drinking were counted so it may be under-reported
You can see that the regions of Europe including Russia and the Western Pacific Region – notably Australia – have the highest number of women drinking alcohol during pregnancy. >35%. In North America, we see 10-15% and Brazil 15-25%.
The lowest regions would be the Eastern Mediterranean Region. Remember not all countries researched this question, so we’re not sure how the other countries would compare to these regions.
The next question becomes, “How does the use of alcohol during pregnancy translate to the prevalence of FASD?” How many cases of FASD are we talking about?
To answer this question, we have to understand that some research was done of Fetal Alcohol Syndrome and others on Fetal Alcohol Spectrum Disorders. These are two different populations.
WHO Regions (6)
1. Highest = ≥ 35% is the European Region (Europe and Soviet Union); and with few studies, the Western Pacific Region
2. Lowest = .2% is the Eastern Mediterranean Region
3. Americas
4. Africa
5. Western Pacific Region
6. Asia
Current policies not working. Isolated programs are helping.
Prevalence of FAS & FASD: Early Evidence of Fetal Alcohol Syndrome (FAS)
FAS was first documented In the 17th and 18th C by physicians who became alarmed because children born to women who drank during pregnancy had characteristically different facial features. They issued warnings about drinking during pregnancy.
In ~1860, a physician in France wrote that children born to mothers who drank during pregnancy had “small heads, peculiar facial features, and an imperfect look.” He was yet to understand the underlying brain damage that occurred because of alcohol.
Finally, in 1973 physicians Jones and Smith identified a pattern of malformations associated with a wide range of effects including permanent brain damage, slower or restricted physical growth, facial features, and cognitive, behavioral, emotional, and adaptive functioning deficits. It was meant to be a broad description of some of the individuals exposed to alcohol during pregnancy. They named this pattern Fetal Alcohol Syndrome (FAS)
Now that there was an actual diagnosis people had something they could study. So much of the research is on FAS.
Fifteen years later, 1988, the U.S. Congress passed the Alcohol Beverage Labeling Act recognizing the danger of drinking while pregnant.
To comply, the liquor industry labeled all alcohol drinks with the following warning: GOVERNMENT WARNING: ACCORDING TO THE SURGEON GENERAL, WOMEN SHOULD NOT DRINK ALCOHOLIC BEVERAGES DURING PREGNANCY BECAUSE of THE RISK OF BIRTH DEFECTS.
I found this warning on a bottle of wine after carefully searching the label with a magnifying glass. It was white ink on a grey background, clearly complying with the law but almost impossible to find! The liquor industry would argue that they complied with the law.
Fetal Alcohol Spectrum Disorders (FASD)
Hence, FASD
- was used to describe a range of effects due to prenatal alcohol exposure.
- FASD is not a diagnosis:
- It is an umbrella term for several diagnoses that describe the different effects of drinking while pregnant.
- Unlike Autism Spectrum Disorder, which is a specific diagnostic category, FASD has several different diagnoses– including FAS – that are all related to prenatal alcohol exposure.
It is critical to understand that FAS is the oldest diagnosis that falls on the FASD spectrum, is the most severe and visibly identified form of FASD, and is the most researched. More importantly, approximately 10% of individuals on the spectrum have facial features.
Hence, when looking at research, we must distinguish whether we are looking at only those at one end of the spectrum such as FAS or at the whole spectrum of disorders under FASD. The numbers differ significantly.
Umbrella term includes:
Fetal Alcohol Syndrome (fAS)
Fetal Alcohol Effects (FAE)
Alcohol Related Birth Defects (ARBD)
Alcohol Related Neurodevelopmental Disorder (ARND)
- The highest incidence of FASD is in the European Region, which includes Russia at >20 per 1,000 children.
- U.S. between 15-20 and Canada 7.5-10,
- Remember, only 5% of youth and children with FASD are diagnosed, so these are conservative estimates. These estimates tell only a part of the FASD story.
- This data is important because it shows an interconnectedness: We are connected by migration, international adoptions, and may never know the history of some people who were exposed during pregnancy. Every country with high prevalence is concerned about alcohol use during pregnancy.
Estimated from the Results
One in every 67 women who consumed alcohol during pregnancy would deliver a child with FAS. This translates to ~119,000 children born with FAS in the world every year.
Again, if we included FASD, the number would be considerably larger. The World Health Organization has reason to be concerned,
So what do we do?
I’d like to switch to some studies that may help inform interventions
Example: West Australia youth detention study (10-17 yo)
Of 99 children assessed
- 88 (89%) was found to have at least one severe cognitive impairment/li>
- 36 of the 88 (41%) was diagnosed with an FASD
- Resulting in policies to train everyone to identify and modify treatment for everyone at the detention center.
Example: Study included Four Areas of the United States
- One in 20 first grade students (5%) was diagnosed with FASD.
- ~95% of people with FASD are un- or misdiagnosed.
Policies and programs are being developed at local levels:
Michigan, Texas, New Hampshire, are trying to sustain long-term training for their state social workers. Other states are trying to pass laws for increased services. Still others are trying to pass laws that recognize FASD as a developmental disability.
We have tried to pass laws to increase services, training, and research in Hawaii and have not yet been successful.
A major difficulty that all programs face in the U.S. and perhaps in the Europe is the cultural value of alcohol consumption.
- The US has lowered federal taxes on alcohol (35% decline in the past 24 years;
production of wine increased $500,000 per producer) - 900% increase in microbreweries
- Alcohol is more available than ever (movie theaters, painting classes, Disneyland, libraries)
- Alcohol is on social media, famous people are endorsing alcohol, alcohol pouches look like juice
- Without mass education about FASD and the risks of drinking during pregnancy, we will always have individuals with FASD. And hence, we must develop policies and programs to address the need.
Opportunities to Help
- 94% Mental health issues (multi-morbidities)
- 50% Adults abuse alcohol/drugs
- 5% live independently
- 80% Difficulty with employment
- 70% Trouble in school
- 60% Trouble with the law
- 45% Legal problems with sexual behaviors
Solution: Comprehensive Net of Support
Thanks for coming to this conference to help build FASD informed care.
Mahalo for reading
We must make the world possible for them.”
— K.K. . Yabusaki, 3/20/19
Resulting Policy & Practice Initiatives
- Conduct comprehensive neurodevelopmental & health assessments.
- Train officers to recognize and care for individuals with impairments.
- Train and change practices for police, child protection, education, health, and law.
