1. FASD
Indiana FASD
Prevention
Taskforce
Working to Prevent Fetal Alcohol Spectrum Disorders Through High School and Middle School Curricula This presentation was designed for use in High School Social Science Classes.
NOTE TO INSTRUCTORS:
Discussing alcohol use or pregnancy with teenagers may sometimes be difficult. Both can be sensitive subjects, particularly if an individual has been personally affected by either. Furthermore, given the frequency of fetal alcohol spectrum disorders (FASDs), it is very possible that one or more students may have a family history of, or be personally affected with, one of these conditions. It is also important to note that the features of FASDs are not unique to this group of conditions. Therefore, their diagnosis needs to be made by a trained professional who has the tools necessary to distinguish the features of fetal alcohol syndrome (or a related disorder) from those of other syndromes, or from traits that are strictly familial in nature.

2. FASD
Indiana FASD
Prevention
Taskforce
Fetal Alcohol Spectrum Disorders Why a person should NOT drink alcohol if she COULD get pregnant!
INTRODUCTION OF THE TOPIC:
Questions to pose to the class-
Why do you think a person should not drink alcohol if pregnancy is possible?
Why does this say “if she COULD get pregnant”?
Exercise- An exploration of the students’ understanding of the following terms. This may be done by discussion or as a written exercise, and may work as an anticipatory set that allows you to assess the students’ previous knowledge.
Fetal: relating to the fetus; the fetal period of human development occurs
from 9 weeks onward.
Alcohol: referring to drinks consumed that contain alcohol.
Spectrum: referring to the wide range of effects of the alcohol.
Disorder: referring to the fact that the effects constitute a medical condition
that may be diagnosed by a physician.

3. History of Fetal Alcohol Spectrum Disorders
FASD
History of Fetal Alcohol Spectrum Disorders
The effects of parental alcohol use have been known since the time of Aristotle
First described in the literature by Jacqueline Rouquette in 1957, although the French physician Paul Lemoine (1968) is credited with the first publication
Discussion points-
Aristotle once wrote: “Foolish, drunken, and harebrained women, most often bring forth children like unto themselves, morose and languid.”
Also, a Carthaginian ritual “forbade the drinking of wine by the bridal couple so that a defective child would not be conceived.”
In 1725, the College of Physicians drafted a letter to Parliament stating, “the fatal effects of the frequent use of several sorts of distilled spirituous liquors upon great numbers of both sexes rendering them diseased, not fit for business, poor, a burthen to themselves and neighbors and too often the cause of weak, feeble, and distempered children.”
Reference: Fetal Alcohol Syndrome Handbook from the University of South Dakota (
greek_aristotle.html

4. History of Fetal Alcohol Spectrum Disorders
FASD
History of Fetal Alcohol Spectrum Disorders
First identified in the U.S. in 1973 by Jones and Smith, who coined the term “fetal alcohol syndrome”
As of 1989, all alcohol beverages sold in the U.S. must carry a warning that drinking during pregnancy can cause birth defects
Discussion points-
The first scientific study of the effect of alcohol use in pregnancy was likely that of Dr. William Sullivan in 1899.
He compared “pregnancy outcomes in 120 female prisoners who were alcoholics Sullivan compared these alcoholics with 28 of their blood relatives who were married to sober husbands and had also given birth to children Compared to the 44 % mortality rate among the alcoholic population, the mortality rate among children born to these nonalcoholic blood relatives was 24% [H]e also found that women who entered prison early in their pregnancies gave birth to children who were healthier than women who entered prison late in their pregnancies. Presumably this was because those who entered prison late in pregnancy had been drinking for a longer time during pregnancy.”
Reference: Fetal Alcohol Syndrome Handbook from the University of South Dakota (
Do you think the label on this slide is an adequate warning?

5. History of Fetal Alcohol Spectrum Disorders
FASD
History of Fetal Alcohol Spectrum Disorders
In 1978, the term “fetal alcohol effects” (FAE) was coined to describe conditions that are presumed to be caused by prenatal alcohol exposure but don’t meet the diagnostic criteria of FAS
In 1996, the Institute of Medicine of the National Institutes of Health proposed the terms partial FAS, alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD)
Now considered “fetal alcohol spectrum disorders”
Discussion points-
Only recently have we really begun to understand the specific effects of prenatal alcohol use. And only recently have we had specific criteria for diagnosis.

6. History of Fetal Alcohol Spectrum Disorders
FASD
History of Fetal Alcohol Spectrum Disorders
“Fetal alcohol spectrum disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis.”
National Taskforce on Fetal Alcohol Syndrome and Fetal Alcohol Effects, 2004

7. Fetal Alcohol Spectrum Disorders (FASD)
Possible Diagnoses
Fetal alcohol syndrome (FAS)
Partial FAS (pFAS)
Alcohol-related neurodevelopmental disorder (ARND)
Alcohol-related birth defects (ARBD) + =
Discussion points-
FASDs include several different disorders. Fetal alcohol syndrome is characterized by a constellation of physical, cognitive and behavioral features. The other 3 conditions listed here, partial FAS, ARND and ARBD, have some of the features of classic FAS but not all of them. However, it is important to note these three conditions are not necessarily “milder” conditions. The brain damage and its consequences in a child with ARND can be just as significant as those of a child with full FAS.
Question- What is the advantage of having a diagnosis?
It facilitates the medical management for the affected individual, and helps
the person to receive the appropriate services.
It facilitates communication among those involved in the care of the individual
(including physicians, caregivers, families, and teachers).
It allows for increased awareness and understanding by those involved with
the affected person. It also helps the affected person be more aware of why
things are the way they are and what his/her strengths and limitations may
be.
FAE (fetal alcohol effects) is an older term used to describe the last three listed above.

8. On any given day in the United States…
FASD
On any given day in the United States…
Approximately 11,000 babies are born
1 of these babies is HIV positive
3 of these babies are born with muscular dystrophy
4 of these babies are born with spina bifida
Exercise- Let’s do a little math.
If this class lasts for 45 minutes, how many babies would be born with FAS in
the United States during this class period? 1-2 babies.
How about those with any fetal alcohol spectrum disorder? 3-4 babies.
If 40,000 babies with a FASD are born each year in the U.S., how many will
be born while you are in high school? 160,000.
10 of these babies are born with Down syndrome
20 of these babies are born with FAS
100 of these babies are born with a FASD
From the Executive Summary of the IOM Report. FAS Community Resource Center.

9. The Prevalence of FAS and FASD
The prevalence of FAS is estimated to be about 1 in 500 to 1 in 1000 births
The prevalence of FASD is estimated to be nearly 1 in 100 births
Discussion points-
Half of all pregnancies are unintended.
Nearly half of year-olds in the US have had sex at least once (Alan
Guttmacher Institute).
20% of sexually active teenagers become pregnant and approximately 80% of
these are unintended (Alan Guttmacher Institute).
More than 20% of pregnant women report alcohol use in the first trimester.
The rate of binge drinking among pregnant women age 15 to 17 was 8.8%.
Question to pose to the class-
Why is it difficult for us to get an EXACT incidence of FAS and the other FASDs?
Most women who drink alcohol during pregnancy do not report it.
Many children with FASDs are no longer with their birth mother; therefore, it
is difficult to get an accurate history of the pregnancy.
It is reported that FAS is the LEADING known cause of mental retardation in the United States (
Eustace LW 2003; Substance Abuse and Mental Health Services Administration;
and the Centers for Disease Control and Prevention

10. FASD
How much is too much?
The more alcohol consumed during pregnancy, the higher the risk for adverse effects
Binge drinking is particularly harmful!
No amount of alcohol has
been proven ‘safe’ to
consume during pregnancy
Every FASD is 100% preventable!
Questions to pose to the class-
What is a dose-response relationship?
This refers to the level of effect a particular agent has on an individual or
population, depending on the quantity of that agent. If there is a dose-
response relationship, the more agent that is present, the greater the
effect (and vice versa).
What is another example of a dose-response relationship?
Food and weight gain: the more a person consumes, the more weight
he/she will gain.
Why are FASDs 100% preventable?
If a woman does not drink, her baby is not exposed to alcohol.
If FASD is a poor outcome and it is 100% preventable, why does it continue
to exist?
Half of all pregnancies are unplanned.
Women who are addicted to alcohol may not be able to stop drinking
without help.

11. FASD
What is a Drink?
A Binge is four or more drinks on one occasion for a woman; five or more for a man
A Drink is 12 ounces of beer, five ounces of wine, or 1.5 ounces of hard liquor
Questions to pose to the class-
What is common about all of these different drinks that allows them to be
classified as a “drink”?
They all contain the same amount of alcohol.
What are other specific drinks, not shown here, that contain alcohol?
Wine coolers
Shots
Others
Note that some mixed drinks actually contain the amount of alcohol in 4-5
drinks!!
Also, beers served in extra large glasses count as more than 1 drink.
= =

12. The Effect of Alcohol on a Baby’s Development
FASD
The Effect of Alcohol on a Baby’s Development
Alcohol freely crosses the placenta from the mother to the baby
Blood alcohol levels of the baby are equal to that of the mother, within minutes of consumption
The critical period is the entire pregnancy
Background information-
The placenta is what connects the mother’s blood supply to that of the baby. It is essential for providing oxygen and nutrients to the growing baby.
Consider showing a picture or diagram of the placenta and how this
exchange takes place.
Questions to pose to the class-
What does it mean to say the blood alcohol levels of the baby are equal to
that of the mother?
What does the phrase “critical period” mean to you?

13. The Effect of Alcohol on a Baby’s Development
FASD
The Effect of Alcohol on a Baby’s Development
Brain and nervous system
Heart
Limbs
Lips and palate
Ears
Eyes
Discussion points-
Alcohol can cause problems in several different ways:
It can kill cells
It can disrupt the ways certain cells develop, travel, or function
It can affect blood flow to the placenta, which would then hinder the
delivery of nutrients and oxygen to the developing baby (
Questions for discussion-
Have you ever witnessed a person who has been drinking heavily? What did
you see?
The effects of alcohol on the brain of a mature adult have been clearly
documented.
How much more harmful do you think alcohol is on the brain of a baby
early in development when it is still growing and the cells are making
important connections for proper function?
Look at the diagram on this slide. Why would it be logical for the effects of
alcohol on the baby be the greatest in the first 8 weeks of the pregnancy?
Because this is the period of time of greatest activity in the
formation of the major organs and structures of the body.
Development of the brain is occurring throughout the pregnancy, which means that alcohol exposure at any point may cause brain damage.
Figure from

14. The Diagnosis of FAS Defined by four criteria:
Exposure to alcohol while in the womb
Characteristic facial features
Growth problems
Involvement of the central nervous system (the brain)
Question to pose to the class-
Although many characteristics are similar among those individuals with FAS,
why do those affected retain so much individuality?
The genetic make-up of each person is different. Therefore, each
person will metabolize alcohol differently and the specific effects and
their severity will vary.
Nutritional factors and the dose, pattern, and timing of alcohol use also
affect the outcome.

15. FASD Facial Features: Smooth Philtrum and Thin Upper Lip
(little to no groove
above upper lip)
Thin upper lip
Question to pose to the class-
Why are the facial features alone not enough to diagnose someone with FAS?
Because these features can be familial traits that are seen in individuals
who have never been exposed to alcohol.
These features are just “clues” to help a doctor make the diagnosis.
NOTE: Although these features are associated with fetal alcohol syndrome,
they may also be seen in people who do not have a FASD.

16. FAS Facial Features: Short Palpebral Fissures (Eye Openings)
FASD
FAS Facial Features: Short Palpebral Fissures (Eye Openings)
Question to pose to the class-
Why are the facial features alone not enough to diagnose someone with FAS?
Because these features can be familial traits that are seen in individuals
who have never been exposed to alcohol.
These features are just “clues” to help a doctor make the diagnosis.
Eyes are measured from the outer corner to the inner corner

17. The Effect of Alcohol on Growth
FASD
The Effect of Alcohol on Growth
Alcohol consumption increases the risk for having a baby with growth problems
After birth, exposed children may continue to have a decreased growth rate and subsequent short stature
Questions to pose to the class-
Why is growth deficiency a problem? Do you think that growth problems
could be associated with other issues related to development?
To be at your healthiest, you need to have adequate growth. Growth
deficiency, therefore, is often associated with other developmental
delays and medical issues.
It is also important to know that children who are shorter than their
peers may be so because it is familial- not related to an exposure to
alcohol before birth!
Discussion point before moving onto the next slide-
So far, we have talked about several physical effects of a prenatal exposure to alcohol, including its effect on the development of the facial structures and on physical growth of the individual. Now, we are going to discuss the effects of alcohol on the part of the body that may have the most impact on the daily life of an individual with a FASD.
What do you think this is? The brain.
Day and Richardson, 2004, AJMG 127C:28-34.

18. Alcohol Affects Overall Brain Size
FASD
Alcohol Affects Overall Brain Size
Brain of a
healthy baby
Brain of a baby
exposed to alcohol
Discussion points-
The brain damage that occurs while in the womb as a result of alcohol
exposure has effects that persist throughout the life of a child with a FASD.
The effects of alcohol on the developing brain include having a small brain
that is not correctly formed (has structural abnormalities).
Note that the brain on the right is significantly smaller than that on the left. In
addition, you may be able to tell that the overall structure is different.
The brain develops in a highly coordinated manner, and involves the
formation, maturation, and migration of nerve cells. Any of these can be
affected by alcohol use during development.
Question to pose to the class-
What do you think it means to have a small brain?
The cells didn’t form correctly.
The cells formed but then died off.
Photo by Sterling Clarren, MD

19. Alcohol Affects Brain Function
FASD
Alcohol Affects Brain Function
Developmental delays
Learning difficulties
Mental retardation
Speech/language disorders
Problems with memory, perception, sensory integration, or tactile defensiveness
Discussion points-
Since the brain controls essentially every cognitive and motor function in the
body, it is reasonable to predict changes in all types of brain function.
This, however, can be highly variable and kids with a FASD can display a
wide range of features related to brain function.
Question to pose to the class-
How might these problems affect a child in school?

20. Neurological differences often appear as:
Normal
FAS
Neurological differences often appear as:
Slower processing speed (thinking, hearing, etc.)
Problems storing and retrieving information
“Gaps,” difficulty forming links or associations
Difficulty generalizing
Difficulty with abstract concepts
Problems seeing next steps or outcomes
Disconnections (says one thing but does another)
Grasps pieces rather than concepts
Discussion points-
This slide serves as a nice summary about what we see as a result of the changes in the brain of a person with a FASD.
Questions to pose to the class-
What words would you use to describe the brain on the left?
Organized
Structured
Efficient
Fast
Others?
What words would you use to describe the brain on the right?
Disorganized
Unstructured
Inefficient
Slow
Malbin D. 2002

21. A teenager with a FASD, who is 18 years old, may function at the level of a child or adolescent
Emotional maturity
Comprehension
Social skills
Concepts of money and time
Living skills
Reading ability
Physical maturity
6 years
7 years
8 years
11 years
16 years
18 years
Discussion points-
While an 18-year-old with a FASD may look his age, and even speak at a level consistent with his age, he may be significantly delayed in the areas listed on this slide. For example, his daily living skills (being able to get ready in the morning, fix himself a meal, etc.) may be equivalent to those of a 6th grader, his concepts of money and time may be equivalent to those of a 3rd grader, and his emotional maturity may be equivalent to that of a 1st grader.
Questions to pose to the class-
If an 18-year-old has the living skills of an 11-year-old, what might he/she be
able to do?
read, write…
What might he/she NOT be able to do?
drive, hold a job…
Skill Developmental Age Equivalent
Adapted from:

22. Malbin, 2002 Student activity-
Have the students give another example of a behavior or action that would demonstrate the discrepancy between the actual age and the “functional” age of an individual with a FASD.
Malbin, 2002

23. Primary vs. Secondary Disabilities
FASD
Primary vs. Secondary Disabilities
Primary disabilities result from brain damage due to the alcohol exposure
Secondary disabilities develop over time due to lack of intervention and unmet needs
They are believed to be preventable
Discussion points-
What we have been talking about on the last 10 or so slides are primary disabilities, or those problems that are a direct result of brain damage caused by alcohol exposure. Now, we are going to discuss secondary disabilities, or those problems that will develop over time if the affected person is not having his/her needs met or is not getting the appropriate interventional services. The focus of support and intervention is to reduce the secondary disabilities. These are believed to be preventable.
To help explain the concept of secondary disabilities, you could create an analogy, such as an athlete who breaks his/her leg. In this situation, what are the primary and secondary disabilities?
Primary: pain, decreased mobility…
Secondary: persistent pain, permanent damage to the leg, long-term mobility issues…

24. Secondary Disabilities in FASD
Mental health issues
Disrupted school experiences
Inappropriate sexual behavior
Trouble with the law
Confinement in jail or treatment facilities
Alcohol and drug problems
Dependent living
Employment problems
Discussion points-
Mental health issues include: anxiety, attachment disorder, ADHD,
conduct disorder, depression, eating disorders, oppositional defiance
disorder, and others.
Disrupted schooling includes: dropping out, expulsions, and
suspensions.
Inappropriate sexual behaviors include: compulsions, inappropriate
sexual advances and touching, obscene telephone calls, promiscuity,
and voyeurism.
Trouble with the law includes: assault, child molestations, running
away, shoplifting, theft, and others.
So, how common are these disabilities?

25. Secondary Disabilities
Discussion points-
The impact of these problems on a person’s daily life is significant. It is also not limited to the life of the affected individual; the loved ones, caregivers, friends, and educators are also dramatically impacted.
Student activities-
Have the students create factual conclusions using the data in this graph.
For example,
“Among those individuals with a FASD, just over 40% have ‘trouble with the law’.”
You may also ask specific questions using the data. For example,
“Which 3 identified outcomes are the most frequent?”
“In the population of individuals who are ages 6-51, what disability is the least frequent?”
Streissguth AP, et al. 2004

26. The Long Term Consequences of FAS
FASD
The Long Term Consequences of FAS
Only 3% of children lived with biological mother
Poor behavior was common
Average academic function was between 2nd and 4th grade
Independent living was uncommon among adults with FAS
Question to pose to the class-
Ask students to reflect on what they have learned in this lesson and complete the following statement:
“At first I thought……, but now I think…..”
Streissguth et al. 1991

27. FASD
The Cost of FAS
The comprehensive lifetime cost of one baby with FAS is at least $2 million
The cost to American taxpayers for FAS is estimated to be $5 million a day, or up to $6 billion each year
Question to pose to the class-
Where would this money go if it were not needed to help children with FASDs?
Lupton, et al. 2004; Substance Abuse and Mental Health Services Administration

28. Systems of Care for Those with a FASD
Healthcare services
Educational services
Social and community services
Legal and financial services
Discussion points-
Instead, this money is used to support a variety of systems of care for
individuals with FASDs.
Medical care
Early intervention services
Special education services
Foster care and adoption services
Others?
Do these services sound expensive? They are.

29. FASD
For More Information
Fetal Alcohol Spectrum Disorders: Trying Differently Rather Than Harder, by Diane Malbin, MSW. Available at
Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed with FAS, by Leslie Evans, MS, et al. Available for download at
Fetal Alcohol Syndrome, Fetal Alcohol Effects: Strategies for Professionals, by Diane Malbin, MSW. Hazelden Foundation, Center City, MN.
Fetal Alcohol Syndrome: Practical Suggestions and Support for Families and Caregivers, by Kathleen Tavenner Mitchell, MHS, LCADC, and the National Organization on Fetal Alcohol Syndrome. Available at

30. FASD
References
Alan Guttmacher Institute. Facts on American teens’ sexual and reproductive health.
The Centers for Disease Control and Prevention. Fetal alcohol spectrum disorders.
Day NL and Richardson GA An analysis of the effects of prenatal alcohol exposure on growth: A teratologic model. American Journal of Medical Genetics Part C. 127C:28-34.
Eustace LW, et al Fetal alcohol syndrome: A growing concern for healthcare professionals. Journal of Obstetric, Gynecologic, and Neonatal Nursing. 32:
The Institute of Medicine Report on FAS. IOMsummary.htm
Lupton C, et al Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics Part C. 127C:
Mattson SN, et al. Teratogenic effects of alcohol on brain and behavior. National Institute on Alcohol Abuse and Alcoholism. arh25-3/ htm
Spadoni AD, et al Neuroimaging and fetal alcohol spectrum disorders. Neuroscience and Biobehavioral Reviews 31:
Streissguth AP, et al Fetal alcohol syndrome in adolescents and adults. Journal of the American Medical Association. 265(15):
Streissguth AP, et al Risk factors for adverse life outcomes in fetal alcohol sydnrome and fetal alcohol effects. Developmental and Behavioral Pediatrics 25(4):
Substance Abuse and Mental Health Services Administration Fact Sheets. grabGo/factSheets.cfm
University of South Dakota. Fetal Alcohol Syndrome Handbook
fashandbook.pdf

31. FASD
Helpful Websites
National Organization on Fetal Alcohol Syndrome-
Fetal Alcohol Syndrome, Education and Training Services, Inc.-
The FASD Center for Excellence, Substance Abuse and Mental Health Services Administration-
FASlink-
The Arc-
The Centers for Disease Control and Prevention-

32. FASD
Indiana Resources
The Fetal Alcohol Syndrome Center of Indiana - Indiana University Medial Center 975 West Walnut Street, IB 130 Indianapolis, IN Phone:   Fax:    Provides diagnosis, education and patient advocacy for those affected with prenatal alcohol exposure.
CNS - Center for Neurobehavioral Sciences E. State Ft. Wayne, IN Phone:   Toll Free: Provides therapy, education and patient advocacy for those affected with prenatal alcohol exposure. Organizes a support group for parents and caregivers (and other interested parties) of those with a FASD.

33. FASD
Indiana Resources
Indiana Department of Health - IN Perinatal Network (IPN), Prenatal Substance Use Prevention Program (PSUPP) 2 N Meridian Street; Indianapolis, IN Phone:
Fax:
Referrals and early intervention for substance-using pregnant
women. Training for professionals.
Indiana Protection and Advocacy Services N Keystone Avenue, Suite 222, Indianapolis, IN
Phone: or        Fax: Statewide agency for persons with developmental disabilities.

35. Slides developed by: Lisa J. Spock, Ph.D., C.G.C.
Gordon Mendenhall, Ed.D.
Assisted by: David D. Weaver, M.D.
Becky Kennedy, M.Ed.
James M. Ignaut, M.A., M.P.H., C.H.E.S.
Supported by: Indiana University School of Medicine
Indiana State Department of Health
Indiana Department of Education
University of Indianapolis