Aug 10, 2020 | x-post-before-new-layout


Aug 10, 2020 | x-post-before-new-layout

Earlier this year, my husband and I attended an international conference on FASD in Vancouver, B.C. This last conference showed me that FASD was a global public health issue. The challenges we face in Hawaii are the same worldwide!

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

In 2015, the World Health Organization commissioned a study on the prevalence of FASD. Researchers at the Institute for Mental Health Policy Research, Center for Addition and Mental Health in Toronto, Canada analyzed existing data and came up with some interesting findings.
They found the following:

  1. Alcohol use, including binge drinking, during pregnancy is increasing and
  2. ~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.

Global prevalence (%) of alcohol use (any amount) during pregnancy among the general population in 2012.
This slide illustrates the global incidence of drinking during pregnancy. Note,

  • 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)

I need to digress and give a brief history about fetal alcohol syndrome (FAS) and its relationship to fetal alcohol spectrum disorders (FASD).

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.

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)

Turning to FASD, health professionals observed that not all children and adults with FAS looked or acted the same.

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)

Global prevalence of FASD among children and youth in the general population in 2012 (per 1,000 people).
Here is the results of a study on the prevalence of FASD.

  • 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

Given this data, researchers projected:

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)

A 2018 study in Western Australia of youth detained in their justice system.

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

In 2018, a study in the U.S. was published.

  • 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.

  1. The US has lowered federal taxes on alcohol (35% decline in the past 24 years; production of wine increased $500,000 per producer)
  2. 900% increase in microbreweries
  3. Alcohol is more available than ever (movie theaters, painting classes, Disneyland, libraries)
  4. Alcohol is on social media, famous people are endorsing alcohol, alcohol pouches look like juice
  5. 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

The take away message is that FASD is not going away. These figures provide us with 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

The best solution is prevention, but we have people who need us now. Until we can stem the use of alcohol during pregnancy, we must continue to improve our support and services to individuals who never asked to be born much less born with brain damage due to fetal alcohol exposure.

Thanks for coming to this conference to help build FASD informed care.

Mahalo for reading

“Individuals with FASD are born into an impossible world
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.
Visit our website for more information and resources.
Our social connects:
Support our FASD Awareness Campaign and Research Project.
For more about Dr. Ann Yabusaki, please click here to review her bio.