Fetal Alcohol Exposure:
Time to Know, Time to Act
Ontario’s Provincial Conference
April 10-11, 2003
FAS 101
Fetal Alcohol Spectrum Disorder
Mobilization Project
Jane Hoy, Consultant
Jane Hoy
Fetal Alcohol Spectrum Disorder Mobilization Project - Dungannon, Ontario
R.R. # I
Dungannon, ON NOM IRO
Telephone: 519-529-7929
Fax: N/A
Jane Hoy has been instrumental in bringing new programs to life with an integrated community
approach for over the past 25 years. This has included parent outreach programs, child and
youth education initiatives, A Health Canada — CAPC project for Huron County, specialized
training for therapeutic treatment programs and traumatized communities such as Walkerton,
and most recently addressing Fetal Alcohol Spectrum Disorder (FASD) prevention and
awareness for Huron County and South Western Ontario. Ms. Hoy’s innovative and creative
strategies used to increase awareness and prevention for FASD in Huron County was the
highlight of the recently produced video DIFFERENT DIRECTIONS: Prevention of FAS.
Learning gleaned from these experiences is captured in a new publication “Keys to Successful
Alcohol and Pregnancy Awareness Campaigns” by Best Start.
Community Based FASD Prevention
2
Test Your Knowledge of FAS/FAE
Decide whether each of the following statements is a truth or myth:
1.
It’s okay to drink beer or wine coolers during pregnancy because these substances aren’t strong
enough to cause a problem.
2.
If you’ve already had one or more children who appear normal and you drank during pregnancy,
drinking during this pregnancy won’t result in problems for this baby either.
3.
Only chemically dependent mothers have babies affected by FAS/FAE.
4.
All people with FAS are mentally retarded.
5.
People with FASIFAE will outgrow their behavior problems as they mature.
Multiple choice (choose the correct answer):
6.
What percentage of women drinks alcohol before realizing they are pregnant?
a) 10%
b) 20%
c) 35%
d) 50%
e) 75%
7.
How much alcohol can a woman safely consume during pregnancy?
a) 1-3 drinks
b) 4-10 drinks
c) 11-15 drinks
d) as much wine, as she wants but no hard liquor
e) no amount is safe
8.
What percentage of persons with FAS/FAE attain independence in living and working?
a) 10%
b) 18%
c) 35%
d) 53%
e) 67%
Community Based FASD Prevention
3
9.
Which of the following groups of women are at higher than average risk for drinking
during pregnancy?
a) women with a college education
b) unmarried women
c) female students
d) women in households with greater than $50,000 annual income
e) all of the above
10.
In which of the following ways does alcohol affect a man’s ability to father healthy children?
a) lower levels of testosterone
b) reduced mobility of healthy sperm
c) increased risk of inherited tendency toward alcoholism
d) possible adverse effects of DNA in sperm before conception
e) all of the above
Community Based FASD Prevention
4
Answer for Test Your Knowledge of FAS/FAE
1.
Myth — Beer and wine coolers are just as dangerous as other types of alcohol and pose similar
threats.
2.
Myth — Older children who appear to be healthy may have subtle affects of FAS/FAE. Later
children born to mothers who drink are often more seriously impaired, not only because her use
tends to increase over time, but also because her health tends to deteriorate.
3.
Myth — Women who are not identified as being chemically dependent but who drink occasionally
to moderately also run the risk of affecting their babies.
4.
Myth — Some people with FAS are mentally retarded; others are not some people with FAS are
brain damaged but have specific areas of strengths and weaknesses.
5.
Myth — Unfortunately, people with FAS do not outgrow their behavior. FAS lasts a lifetime but
the types of problems an individual experiences may change with age.
6.
e) — No one knows how much is too much. Drinking even small amounts during certain critical
gestational periods can cause some of the permanent, irreversible symptoms of FAS/FAE. The
probability of having a baby with problems caused by alcohol increases with how much you drink
and how often you drink during pregnancy. Therefore, no amount is safe!
7.
d) — It is estimated that approximately half of women of childbearing age are drinking alcohol
regularly at the time they get pregnant. Most of them will quit drinking when they find out they are
pregnant.
8.
a) — According to research done at the University of Washington, fewer than 10% of adults with
FAS/FAE were able to live independently and without employment problems. One reason for this
could be that the development of social skills is stopped or slowed at a young age.
9.
e) — Women who smoke, unmarried women, female students, women with a college education
and women in households with greater than $50,000 annual income are all at a higher than
average risk for drinking during pregnancy.
10.
e) — Alcohol affects the male in all the ways listed. Children whose father is/was a heavy drinker
are at a higher risk of birth defects, social problems, learning problems and behavior problems. It
is not known how much is due to alcohol consumption before or at the time of conception, or is
attributable to inherited/genetic factors.
Community Based FASD Prevention
5
Test your knowledge of Fetal Alcohol Syndrome
(Choose just one answer for each question)
1) What is the leading known cause of mental
retardation today?
a. Down Syndrome
b. Fetal Alcohol Syndrome
c. Fetal Alcohol Effects
d. Cerebral Palsy
e. Spina Bifida
2) What percentage of women drinks alcohol before
realizing they are pregnant?
a. 10%
b. 20%
c. 35%
d. 50%
e. 75%
3) What percentage of persons with FAS/FAE
attain independence in living and working?
a. 10%
b. 18%
c. 35%
d. 53%
e. 67%
4) Which alcoholic beverage contains the greatest
amount of alcohol?
a. 12 oz. can of beer
b. 5 oz. glass of wine
c. one shot of liquor
d. 12 oz. wine cooler
e. All of the above
5) What is the most debilitating aspect of prenatal
alcohol exposure?
a. Memory deficits
b. Growth retardation
c. Lack of impulse control
d. Mental retardation, IQ below 70
e. Attention Deficit Disorder
6) How much does treatment for FAS cost US
taxpayers each year?
a. Almost $1,000,000.00 each year
b. Almost $2,000,000.00 each year
c. Almost $100,000,000.00 a year
d. Almost $2,000,000,000.00 a year
e. Almost nothing, as expenses are incurred by
private insurance.
1b
2d
3a
7) Which of the following groups of women are
at higher than average risk for drinking
during pregnancy?
a. Women with a college education
b. Unmarried women
c. Female students
d. Women in households with greater than
$50,000 annual income
e. All of the above
8) Of the secondary disabilities associated with
FAS/FAE, which one is most common?
a. Mental illness
b. Trouble in school
c. Trouble with the law
d. Abuse of alcohol or other drugs
e. inappropriate sexual behavior
9) Which of the following -are protective factors
for preventing secondary disabilities in
FAS/FAE?
a. IQ below 70
b. Early diagnosis
c. Eligibility for disability services
d. Stable home environment
e. All of the above
10) In which of the following ways does alcohol
affect a man’s ability to father healthy
children?
a. Lower levels of testosterone
b. Reduced mobility of healthy sperm at
time of conception
c. Increased risk of inherited tendency
toward alcoholism
d. Possible adverse effects on DNA in
sperm before conception
e. All of the above
© 1999 Teresa Kelleman, Coordinator
FAS Community Resource Center in Tucson, AZ
Visit our Web site at http://come-over.to/FASCRC
Answer key and explanation are on separate sheet.
No answer key? More questions?
Email: Teresa at tjk@azstamet.com
FAS QUIZ Answer Key
4e
5c
6d
7e
8a
Community Based FASD Prevention
9e
10 e
6
FAS QUIZ Explanation of Answers
1) What is the leading known cause of mental retardation?
Answer: According to the National Organization of Fetal Alcohol Syndrome, Fetal Alcohol
Syndrome is the leading known cause of mental retardation in the United States. The World
Health Organization says that Fetal Alcohol Syndrome is the leading cause of mental
retardation in western civilization, as indicated by studies done in the U.S., Australia, Europe,
and Canada. The incidence of FAS is estimated to be 1.9 per 1,000, or about one in every 500
births. FAS may be even more frequent in some developing countries, like South Africa.
2) What percentage of women drinks alcohol before realizing they are pregnant?
Answer: Although statistics vary from study to study, it can be estimated that approximately half
of women of childbearing age are drinking alcohol regularly at the time that they get pregnant.
Most of them will quit drinking when they discover they are pregnant, but many of them will
continue to drink. According to a report published by the Journal of the American Medical
Association, 25% of pregnant women and 55% of nonpregnant women between the ages of 18
and 45 used alcohol during the previous month. Other studies place the percentage of women
who knowingly drink during pregnancy at about 15%. More than half of women of childbearing
age do not know what Fetal Alcohol Syndrome is (NOFAS Statistics)
3) What percentage of persons with FAS/FAE attains independence in living and
working? Answer: According to research by Ann Streissguth through the University of
Washington Fetal Alcohol and Drug Unit, about 18% of the adults with FAS and FAE in her
study were able to achieve independent living, but fewer than 10% were able to live
independently and without employment problems. One reason for this could be that the
development of social skills could be arrested (not just delayed) in persons with FAS. This is a
possible indication of research by Dr. Edward Riley, as reported in an article in Crime Times. In
children from 6 to 13 years old, the social maturation seemed to not progress beyond the level
of a 4 to 6 year old child.
4) Which alcoholic beverage contains the greatest amount of alcohol?
A can of beer, a glass of wine, a shot of liquor, and a wine cooler all contain about 1/2 ounce of
absolute alcohol. If a woman consumes two drinks within one hour, her baby could have a BAC
(blood alcohol content) even higher than the mother, because the baby’s system is not as
mature and it takes the baby longer to metabolize the alcohol, which circulates in the baby’s
body for longer than it does in the mother’s. The alcohol molecule is very tiny and passes easily
from the mother to the baby, where it can destroy brain cells and can have adverse effects on
the developing organs. Alcohol is a toxic substance and has no nutritional value.
5) What is the most debilitating aspect of prenatal alcohol exposure?
While alcohol exposure can cause all of the listed effects, the damage to the frontal lobes is
very serious, as this is where the brain maintains control of the impulses and inhibitions. The
person with FAS has sustained damage to the frontal lobes and therefore cannot control
behavior or expression of feelings, with lack of impulse control and poor judgment, much like
that of an inebriated person. However, the person with FAS does not have a choice about being
impaired. This brain damage that causes the lack of impulse control places the person with FAS
at high risk of behavior problems, suspension and expulsion from school, and trouble with the
law as an adult. This impedes the person’s ability to form healthy social relationships. This is a
permanent neurological condition with which the person with FAS must suffer for an entire
lifetime.
6) Row much does treatment for FAS cost US taxpayers each year?
Answer: Although previous studies estimated the cost of FAS to be somewhere between $250
million and $1.6 billion, recent studies indicate a much higher price tag. According to the
National Institute on Drug Abuse, in one year taxpayers spend $1.9 billion dollars to treat
Community Based FASD Prevention
7
children and adults with diagnosed FAS. This figure does not include other alcohol related
disabilities associated-with-prenatal-exposure -to-alcohol (FAE) that is not diagnosed as full
FAS. So the actual costs are thought to be much higher
7) Which of the following groups of women are at higher than average risk for drinking
during pregnancy?
Answer: Women who smoke (not included in the test, as this was too obvious); unmarried
women; female students; women with a college education; and women in households with
greater than $50,000 annual income. These are results of a very recent survey of over 100,000
women, which was conducted by the Center of Disease Control and Prevention and was
published in the August 1998 issue of the journal of Obstetrics and Gynecology.
8) Of the secondary disabilities associated with FAS/FAE, which one is most common?
Answer: The most common secondary disability in FAS/FAE is mental illness, occurring in 94%
of the adults in Ann Streissguth’s studies, with clinical depression being the most prevalent
diagnosis. Other mental health issues include suicidal threats and attempts, panic attacks and
auditory and visual hallucinations. All of these problems seem to increase with age. Secondary
disabilities are preventable when protective factors are in place.
9) Which of the following are protective factors for preventing secondary disabilities in
FAS/FAE? Answer: An IQ below 70, early diagnosis, eligibility for state services, absence of
domestic violence, and stable home environment are all protective factors, according to
Streissguth’s research. Unfortunately, only about 10% of adults with FAS/FAE are found to be
eligible for services for persons with developmental disabilities, because most of them have IQ’s
above 70, which is the cut-off in most states for eligibility for services The person with an IQ
lower than 70 will more likely qualify for services, and will be identified as having disabilities;
therefore, inappropriate behavior is more easily tolerated and understood. But the child or adult
with an IQ in the normal range is more likely to appear normal to others, and inappropriate
behavior will be judged more harshly; this is a factor in the chronic frustration the child
experiences that is likely to result in depression and/or aggressive behavior. The child who
appears to be normal but has the same neurological difficulties as the child with a lower IQ is
more likely to be judged as “bad” and is more prone to the anger and frustration resulting from
unrealistic expectations of parents and teachers who do not recognize or understand the
neurological origins of the problem behaviors. The average IQ of the person with FAS is about
80, and the average IQ of the person with FAE is around 90; however, almost all of them suffer
mental impairments of low social skills, emotional immaturity, memory deficits, and most have a
need for continued close supervision and support services.
10) In which of the following ways does alcohol affect a man’s ability to father healthy
children? Answer: Alcohol affects the male in all the ways listed. Children whose biological
fathers are/were heavy drinkers are at higher risk of birth defects, social problems, learning
problems, and behavior problems. It is not known how much is due to alcohol consumption
before or at the time of conception, or is attributable to inherited/genetic factors. It is known that
alcohol use in the family increases the risk of child abuse, sexual abuse, domestic violence,
automobile accidents, accidents in the home, unemployment, and suicide. All of these factors
can have a negative impact on raising a child. When a woman is pregnant, and trying to abstain
from alcohol, the number one factor in her not consuming alcohol is her partner’s not using
alcohol as well. For more information, see the online article, “What About Dads?”
 1999 Teresa Kellerman for FAS Community Resource Center in Tucson, Arizona~Web site:
http://come-over.to/FASCRC
All data in this test is compiled from reliable, credible sources.
To view the specific sources of information, see this FAS QUIZ on the internet:
http://www.come-over.to/multiplechoice/fasquiz1.htm
Community Based FASD Prevention
8
Community Based FASD Prevention
9
Such as: Alcohol, tobacco smoke, illegal drug and
• Some over the counter and prescription drugs
Note: Adapted from: Moore Keith I., The Developing Human, 4th Ed. ( W.B. Saunders, Philadelphia, 1988)
•
The effect of toxic Substances* on Development
Timelines and FAS / FAE
People with FAS/FAE may present a complex portrait of competencies and delays. It is not
uncommon to encounter a mix of abilities and lags in any one person. The profile of maturation
and strengths varies significantly between people with FAS/FAE. This chart is intended to
provide a visual cue for gaps which may be masked by abilities (i.e. emotional dysmaturity may
be hidden by strong expressive language skills).
It is when the expectation that a person is “on time” when they are actually developmentally
much younger that conflict develops. “Why don’t you act your age!” and “Grow up” are common
comments which reflect frustration where immaturity has not been recognized as part of a
normal variability in development One parent said her feeling about her child changed after she
was reminded to “Think younger.”
Timelines and FAS/FAE
A gradual catch up is noted in young adults with FAS/FAE. Rather than being able to leave
home at 18, a more realistic time line may be 25 to 30. Ask yourself what responsibilities would
be reasonable to expect from a 10 year old when confronted by a tall, verbal 16 year old with
FAS/FAE. Adjust expectations accordingly.
Adapted from: Research findings of Streissguth, Clarren et al.
D. Malbin 94
Community Based FASD Prevention
10
IT TAKES A COMMUNITY – FAS/E FACT SHEET
Understanding Infants
With FAS/E
CHARACTERISTICS OF INFANTS WITH FAS/E
Infants may have some or most of the following characteristics.
HEALTH
♦ In the first months, severely affected infants may require hospitalization from disorders affecting
major organs such as the heart or kidneys.
♦ Infants with FAS/E are prone to infections. Generally, they develop more slowly
than other infants.
♦ Motor skills are effected. Infants may be “floppy” babies because of poor muscle tone or have
too much muscle tone, making them rigid.
SLEEPING
♦ Infants with FAS/E may have difficulty sleeping. Routine sleep patterns take longer to develop.
This makes care giving difficult because unpredictable sleep patterns effect all family members.
FEEDING
♦ Infants may have difficulty sucking and swallowing. Keeping food down and gaining weight
may be problems. Some babies take a long time to feed and do better with many short meals
over the course of a day.
BEHAVIOUR
♦ Some infants are irritable and unpredictable. Be patient.
♦ Some infants become over-stimulated when with a caregiver. Know the level of stimulation that
the infant can tolerate and the infant’s ways of tuning out the environment — for example, by
turning away or blinking
FAS AND FAS/E ARE EASILY PREVENTED. CONSUME NO ALCOHOL DURING PREGNANCY
Community Based FASD Prevention
11
Infancy (First Year)
I
! Confirmed history of alcohol use during pregnancy.
!
!
!
!
!
!
!
!
!
!
!
!
!
!
Low birth weight (below 5 1/2 1bs, 12500 grams).
Head circumference below 5th percentile.
Difficulty eating I sleeping which leads to failure to thrive diagnosis.
Hypotonic (floppy) or hypertonic (stiff).
Poor suck reflex.
Often irritable - cries for no apparent reasons.
Described as “sick a lot” (frequent ear infections, gastro enteritis, chest infections).
Slow to grasp milestones (sitting, rolling over, grasping, walking, etc.)
Bonding difficulties, doesn’t show preference for primary care giver over others.
Difficulty establishing regular patterns.
Differences in sensory awareness to pain, cold, touch (under or over reacts).
No stranger anxiety.
Rocking and head banging.
Jerky movements.
Community Based FASD Prevention
12
IT TAKES A COMMUNITY – FAS/E FACT SHEET
Understanding Young Children
With FAS/E
CHARACTERISTICS OF YOUNG CHILDREN
From toddler through preschool, children with FAS/E may be slow to develop. This may not be
readily noticeable due to their young age and small stature.
HEALTH
♦ Severely affected children will continue to have health problems due to organ damage or
being prone to infections.
DEVELOPMENT
♦ Delays affecting speech and vocabulary may be noticeable in the preschool years, indicating
later learning disabilities. Referral to therapy and special needs preschool may counter any
possible learning disability.
♦ Late development of motor skills means children with FAS/E can be clumsy and accident
prone for their age. They may require more intense supervision.
♦ Learning through experience, seeing and hearing may be delayed. They rely more on touch to
explore their surroundings. Hot stoves, camp-fires, electrical outlets or eating non-edible
substances can be dangerous for the unsupervised child with FAS/E.
PRESCHOOL
♦ Over-stimulation or changes in daily routines can lead to tantrums and destructive behavior. A
gradual introduction to preschool may ease this situation.
♦ Interacting with other children can be a problem. Adapting to class routines can be difficult.
Special needs preschool with low pupil / teacher ratios provide speech therapy and other
support programs.
♦ As the child nears school age, an assessment is needed to determine what special services
should be in place to ensure a successful transition to school.
FAS AND FAS/E ARE EASILY PREVENTED. CONSUME NO ALCOHOL DURING PREGNANCY
Community Based FASD Prevention
13
Characteristics (Con’t)
Early Childhood
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
I
Small stature, often described as “pixie like”.
Delays in toilet training.
Poor I sleep awake cycle - may need very little or very much but always erratic.
Language use delays, initially apparent, later echolalia and mimicking.
Doesn’t follow commands which use words like he, she, they.
Can repeat back instructions but seems unable to follow through.
Can follow only one instruction at a time.
Poor receptive language skills.
Problems with word retrieval. Interrupts - does not follow communication patterns.
Uses behaviour to communicate.
Does not imitate play and cannot organize play activities.
Difficulty in taking turns.
High tactile needs - overly affectionate.
Charming, friendly and then overly intrusive,
Poor problem solving abilities - frequent temper tantrums.
Has trouble initiating and ending activities.
Does not make transitions well.
Poor comprehension of personal safety and boundaries.
Spacial difficulties (distance, depth perceptions).
Accident prone.
Demands instant gratification - Wants things now!
Breaks things frequently and is rough.
Problems with sequencing.
Trouble making simple choices.
High supervision needs.
Community Based FASD Prevention
13
IT TAKES A COMMUNITY – FAS/E FACT SHEET
Understanding School Age
Children with FAS/E
CHARACTERISTICS OF ELEMENTARY SCHOOL AGE CHILDREN
There are physical, learning and behavioural difficulties common to most children with FAS/E.
Parents, teachers and careproviders are better prepared to provide nurturing and support if they
understand the nature and extents of these difficulties.
LANGUAGE DEVELOPMENT
♦ Development of speech and language may be delayed.
MEMORY
♦ Children with FAS/E may have problems mentally “registering” information and once
information has been learned it cannot be “retrieved.”
REASONING
♦ The ability to understand that consequences are the results of action is often impaired.
LEARNING DISABILITIES
♦ An impaired capacity to mentally process and use information affects the child’s ability to
learn.
ATTENTION DEFICIT AND HYPERACTIVITY DISORDER
♦ A child with FAS/E may have a short attention span. They are easily distracted. Complicating
this is the abundant and seemingly unending energy of the child.
MOTOR SKILLS
♦ Children may have difficulty coordinating large muscle movements used for running or
climbing and / or lack the small muscle control essential for handwriting.
ADAPTIVE AND SOCIAL BEHAVIOUR
♦ Reasoning and learning disabilities mean that inappropriate behaviour is a constant concern.
FAS AND FAS/E ARE EASILY PREVENTED. CONSUME NO ALCOHOL DURING PREGNANCY
Community Based FASD Prevention
14
Characteristics (Con’t)
Latency (Age 6-11)
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
I
Continues to be small (head circumference, height and weight below 5 - 10%).
Poor sleep I awake cycle.
Difficulty making transitions.
Persistent problems with toileting.
Frequent illnesses.
Has been considered for a receptive language disorder.
Excessively chatty - echolalia - argues.
Difficulty following instructions.
Difficulty initiating and ending activities.
Is not responsive to subtle facial or body language.
Is not responsive to subtle social situations.
Language output is higher than comprehension.
Difficulties with word retrieval.
Tunes out in response to over stimulation.
Often appears to be day dreaming.
Passive in response to difficult situations.
Accused of lying and stealing often.
No sense of personal space I boundaries - intrusion.
Plays with younger children - often viewed as younger themselves.
No stranger anxiety - overly friendly.
Indiscriminate - people are interchangeable.
High tactile needs.
Gullible - easily talked into things.
Cannot share or compromise or cooperate.
Perseverance - repeats things over and over - gets stuck.
Poor social skills - has difficulty maintaining friendships.
Appears manipulative.
Highly active and impulsive - often diagnosed as ADHD.
Disorganized.
Cannot tell time.
Requires constant supervision for safety of self and others.
Cannot make even simple choices.
No appreciation for cause and effect.
Cannot separate fantasy from reality.
Good long term visual memory.
Forgets the rules.
Problems with confabulation - distorted perceptions of what happened.
Developmental delays become even more apparent.
Community Based FASD Prevention
15
IT TAKES A COMMUNITY FAS/E FACT SHEET
—
Understanding Adolescents and
Young Adults with FAS/E
CHARACTERISTICS OF ADOLESCENTS AND YOUNG ADULTS
Youths with FAS/E and their care providers are dealing with normal teenage issues plus the
concerns of FAS/E. Compared to preteens with preteens, parents say the support and structure
for teenagers is as needed and often more difficult to provide.
BEHAVIOUR
♦ The youth with FAS/E can be easily misled by messages from TV and videos. Social skills
interventions, a supervised environment and appropriate school programming can lessen
problems.
♦ Affected youth have problems making friends because of unacceptable or immature behavior,
such as the need to touch when it is inappropriate
SCHOOL
♦ There will be difficulty in communicating and understanding instruction. Abstract thinking is
slow to develop. Reading, math, and spelling will be below their age and grade level. Success
in secondary school will require modified curriculum materials.
♦ Attention deficit and hyperactivity will affect learning and relationships with peers.
Hyperactivity often subsides at adolescence, but attention deficit and impulsivity may remain.
Excess energy needs to be directed.
♦ Some affected youth become skilled in individual sports like swimming or running. Sports can
help build self-esteem and social skills. In team sports they may have difficulty following the
rules and interacting with teammates.
PREPARING FOR ADULTHOOD
♦ The youth with FAS/E will have difficulty with daily living skills that lead to independent living in
adulthood. These include personal care, household skills, managing time and money. Life
skills need to be reinforced from an early age.
FAS AND FAS/E ARE EASILY PREVENTED. CONSUME NO ALCOHOL DURING PREGNANCY
Community Based FASD Prevention
16
Characteristics (Con’t)
Adolescence
I
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
!
Developmental and social skills development issues are most apparent.
Dental anomalies are more pronounced.
Lying and stealing behaviours increase.
Manipulated by older negative peer groups.
Passive in response to difficult situations.
Faulty logic - draws illogical conclusions.
Egocentric.
Low self esteem - depression - suicidal ideation.
Has trouble internalizing modelled behaviours.
Often appear more capable than they are.
Loses temper easily - gets frustrated due to poor comprehension of social rules.
Cannot manage time, money, relationships, hygiene, schedules.
Seems to show little remorse for actions and often blames others.
May be considered for a potential diagnosis of conduct disorder.
Does not learn from experience.
Accident prone.
Cannot make transitions / adjust behaviour to surroundings.
Risk taking without apparent concern for future - no predictability.
Problems with sequencing and problem solving.
Difficulty telling time.
Cannot “walk the walk”.
Poor judgement.
Supervision needs are similar to those of a preschooler.
Lacks affect.
Narrow repertoire of behaviours.
Does not recognize emergencies.
Sexual Issues
• gullible relationships
• touching problems
• often become parents at a very early age
• prostitution
! Memory deficits
• cannot remember phone numbers
• forgets new learning easily
• loses things
• problems with sequencing
• forgets to eat / take medication
• disorganized
! Alcohol and drug use I abuse
! Early involvement in delinquencies
FAS AND FAS/E ARE EASILY PREVENTED. CONSUME NO ALCOHOL DURING PREGNANCY
Community Based FASD Prevention
17
IT TAKES A COMMUNITY – FAS/E FACT SHEET
Basic Needs of Persons
Living With FAS/E
THE FAS/E AFFECTED PERSON
♦ The, person affected with FAS/E needs nurturing, understanding and support. A stable and
home, responsive school system, supporting friends and caring community are important
aspects of nurturing the child with FAS/E.
♦ The person with FAS/E needs to feel that he or she is a part of the community. Self-esteem
and acceptance are critically important.
THE FAMILY
♦ Parents of children with FAS/E need connections with the community, other parents and
services that provide family-centred and culturally sensitive support.
♦ Parents may need help dealing with addictions, poverty, low self-esteem, limited
work skills and parenting skills.
♦ Caregivers should be respectful and non-judgmental toward families living with FAS/E and
acknowledge that the parents of FAS/E affected children are performing a demanding job.
♦ The community social safety net should meet the basic needs of family members and provide
early assistance to the child’s family. Families should have access to appropriate
assessments and diagnoses and be empowered to contribute to all discussions about their
children.
♦ Family members and friends need a good understanding of the FAS/E child’s behaviour,
limitations and potential. Knowing that behaviour can be changed for the better gives hope
and is the basis for coping and growing.
Community Based FASD Prevention
18
Characteristics (Con’t)
Adults
I
! Are considered 18 years going on 10 years - high supervision needs.
! Have often been diagnosed with many other conditions. E.g. ADHD, conduct disorder,
oppositional defiant disorder, sociopath.
! Quantity of language hides quality.
! Appear more competent than they are.
! Cannot manage employment, independent living, money, relationships, parenting.
! Highly intrusive.
! Easily influenced - can be coerced.
! Easily talked into sexual activity.
! Lacks reciprocal friendships.
! Unable to cope with day to day living.
! Appears unmotivated I lazy.
! Appears manipulative.
! Memory deficits.
! Trouble making choices - first choice is only choice.
! Loses belongings - appears to lack understanding of value.
! Poor predictive skills.
! Poor understanding of humour.
! Unrealistic - pie in the sky - aspirations.
! Appears emotionally unstable - cry a lot.
! Poor judgement.
! Lacks internal structure
• self direction
• self control
• self motivation
• self discipline
! Police involvement. Homelessness.
! Suicidal ideation.
! Alcohol I drug use.
! Mental health problems.
! Poor self esteem.
! Lacks affect.
Community Based FASD Prevention
19
Copyright 2000 by the Virtue Project, Inc.
Community Based FASD Prevention
20
Positive Characteristics
• cuddly, cheerful,
• friendly, spontaneous, trusting,
• caring, loving, loyal, compassionate,
• great sense of humor,
• determined, committed, persistent,
• kind, concerned, sensitive, affectionate,
• care for younger children, nurturing,
• gentle, curious, involved,
• creative, willing, helpful,
• energetic, athletic, artistic, musical,
• highly moral, fair, cooperative,
• love animals, enjoy gardening, enjoy constructing,
• highly verbal, wonderful storytellers,
• strong sense of self, hard workers,
• exceptionally good long term visual memory,
• ability to participate in problem solving process,
• devoted parents.
Community Based FASD Prevention
21
CHARACTERISTICS AT GLANCE
SOCIAL
PHYSICAL
-
-
-
Poor practical reasoning
Socially immature
Easily influenced by peers
Difficulty getting along with peers
Poor social judgement
Constant need for supervision
Constant need for attention
Initially charming, then intrusive
Deficit in money concepts
Deficit in time concepts
Trouble with changes in routine
High demand for touch
Lack of bonding to caretakers
Indiscriminate attachment to strangers
LANGUAGE
-
Speech delays
Delayed concept formation
Stuttering and stammering
Articulation difficulties
Delays in syntax, pragmatics and semantics
Discrepancy between surface verbal skills and
ability to communicate effectively
LEARNING
-
-
-
Mental retardation
Reduced selective and sustained attention
Need external structure
Difficulty with abstractions
Poor problem solving strategies
Difficulty grasping cause and effect
relationships
Poor organization
Perseverance
Memory problems
Spotty retention
Impaired rate of learning
Tactile learners
Academic level highest in spelling
Academic lowest in math
Visual perceptual deficits (may be present at all
ages)
Difficulty learning from past experience
Lack of motivation
Trouble generalizing behaviors and information
Learning disabilities
Auditory perceptual deficits
Low birth weight Small size
Small head circumference
Dysmorphic facial features
CNS abnormalities
Hearing problems
Poor gross motor co-ordination
Malformed or misaligned teeth
Differences in sensory awareness
Joint and bone abnormalities
Poor eye/hand coordination
Poor fine motor coordination
Central nervous system abnormalities
Very short neck
- Other physical abnormalities: (heart, bone,
kidney, liver, cleft palate/lip, eye and ear)
BEHAVIOURAL
-
Behaviorally disorganized
Poor self image
Lack of inhibition
Stubborn/sullen
Teasing or bullying behavior
Truancy problems
Depression/withdrawal/passivity
Hyperactivity
Easily overstimulated
Impulsive
Difficulty with transitions
Insatiability for intense experiences
Disinterest in food
Fearless
- Unresponsive to verbal cautions
POSITIVE
-
Cuddly, cheerful
Friendly, spontaneous, trusting
Caring, loving, loyal compassionate
Great sense of humor
Determined, committed, persistent
Kind, concerned, sensitive, affectionate
Care for younger children, nurturing
Gentle, curious, involved
Creative, willing, helpful
Energetic, athletic, artistic, musical
Highly moral, fair, cooperative
Love animals, enjoy gardening, enjoy
constructing
Highly verbal, wonderful storytellers
Strong sense of self, hard workers
Exceptionally good long term visual memory
Ability to participate in problem solving process
Devoted to parents
Permission to photocopy granted by Committee on
Alcohol and Pregnancy, Manitoba 1997
Community Based FASD Prevention
22
As our understanding of the meaning of ‘organic brain differences’ is integrated into everyday
life, at home and in the community, parents and caregivers undergo a personal and professional
paradigm shift in how they understand and feel about children with FAS I FAE. The shift
includes moving from:
From Seeing Child As:
To Understanding Child As:
Won’t
Bad
Lazy
Lies
Doesn’t try
Mean
Doesn’t care, shut down
Refuses to sit still
Fussy, demanding
Resisting
Trying to make me mad
Trying to get attention
Acting younger
Thief
Doesn’t try
Inappropriate
Not trying to get the obvious
Can’t
Frustrated, defended, challenged
Tries hard
Confabulates I fills in
Exhausted or can’t start
Defensive, hurt, abused
Can’t show feelings
Overstimulated
Oversensitive
Doesn’t ‘get it’
Can’t remember
Needing contact, support
Being younger
Doesn’t understand ownership
Tired of always failing
May not understand proprieties
Needing many reteachings
Alcohol Related Birth Defects/Staff Development 10120/97
Community Based FASD Prevention
page 38
23
When Good Techniques Don’t Work:
Trying Differently Rather Than Harder
by: Diane Malbin
COMMON CHARACTERISTICS OF INDIVIDUALS WITH FAS/FAE WITH
EARLY IDENTIFICATION AND SUPPORT:
Characteristics which may reflect underlying organicity may serve as strengths. The following
may gradually extinguish or erode without accurate identification and appropriate supports:
♦ Atypical strengths, creative intelligence
♦ Perseveration: Determined, persistent, willing, committed hard workers, involved, energetic
♦ Highly moral, deep sense of fairness, rigid belief systems
♦ Strong sense of self
♦ Loving, loyal, caring, kind, concerned, sensitive
♦ Friendly, trusting
♦ Tactile, cuddly
♦ Affectionate, compassionate, gentle
♦ Athletic prowess
♦ Love animals
♦ Love gardening, constructing, mechanics
♦ Love children, nurturing, devoted partners and parents
♦ Highly verbal
♦ Good sense of humor, joyous
♦ Spontaneous, curious, questioning, have a sense of wonder
♦ Creative, artistic, musical
♦ Rich fantasy life, poets, writers
♦ Wonderful story tellers
Sources: Clarren, Straissguth, Mona, Malbin, Rathbun, FAS/E Clinical Programs, numerous parents and
professionals.
Alcohol Related Birth Defects/Staff Development 10120/97
Community Based FASD Prevention
page 56
24
When Good Techniques Don’t Work:
Trying Differently Rather Than Harder
by: Diane Malbin
SECONDARY CHARACTERISTICS:
Without identification and support, gradual deterioration associated with
FAS/FAE may develop
Good parenting skills and good teaching or therapeutic techniques may fail to yield expected
positive outcomes. They may in fact increase frustration overtime. Secondary behavioral
characteristics may develop as a function of this frustration and the differential interpretation of
behaviors as willful vs. organically-based, may lead to punishment rather than support.
All humans protect ourselves from pain. The cumulative effect of chronic failure, feeling like they
“can’t ever do anything right”, leads to the development of self-protective defense structures.
These behaviors have been well documented in research on adolescents and adults with
FAS/FAE.
Unfortunately, these behavioral characteristics are often presented as intrinsic to people with
FAS/FAE, as inevitable rather than acquired over time. Recent findings are indicating that these
secondary characteristics are more a function of a gradual erosive process and may be largely
preventable and intervenable, following recognition of the FAS/FAE, and implementation of
supports which recognize the neurological basis of learning and behaviors.
Without Identification and understanding, they are often:
♦ Rejected or teased by peers, seen as ‘odd’
♦ The target of pranks by peers
♦ Labeled “lazy”, “stupid”, “unmotivated”, “doesn’t try”
♦ Out of ‘synch’ with others; they miss nuances of communication
♦ Punished, ridiculed, and labeled
♦ Judged
Alcohol Related Birth Defects/Staff Development 10120/97
Community Based FASD Prevention
page 54
25
FAS/FAE
Information Service
For bilingual information on
Fetal Alcohol Syndrome/Fetal Alcohol Effects,
Call TOLL FREE in Canada:
1-800-5594514
Or, to receive a general information package,
Please complete and return this form to
CCSA, 75 Albert Street, Suite 300, Ottawa, ON K1P 5E7.
Telephone (local calls only) (613) 235-4048 ext. 223, fax (613) 235-8101.
email: fas@ccsa.ca
www.ccsa.calfasgen.htm
Name:__________________________________________________________
Organization:_____________________________________________________
Address:_________________________________________________________
City/Prov:
Tel.
Postal Code:_______________
Fax:
email:____________________
The FAS/FAE Information Service, now in its seventh year of operation, is provided by
the Canadian Centre on Substance Abuse (CCSA), through its National Clearinghouse
on Substance Abuse, with additional funding from Health Canada, the Brewers
Association of Canada and the Association of Canadian Distillers.
Service d’Information
SAF/ EAF
sur le
les
Pour obtenir des renseignements bilingues
sur le Syndrome d’alcoolisme foetal
et les effects de l’alcool sur le foetus,
appelez SANS FRAIS au Canada au:
1-800-559-4514
Ou pour obtenir une trousse de renseignements généraux,
remplissez ce coupon et retoumez-le au
CCLAT, 75, rue Albert, piece 300, Ottawa, ON K1P 5E7.
Téléphone (communications locales seulement) (613) 235-4048 poste 223,
fax (613) 235-8101, courrier-électronique: fas@ccsa.ca
www.ccsa.ca/fasgenf.htm
Nom:______________________________________________________________
Organisme:_________________________________________________________
Adresse:___________________________________________________________
Ville/Prov:
Tel:
Code postale:______________
Fax:
courrier-élec:_______________
Le Service d’information sur le SAF et les EAF, en operation depuis sept ans, est offert par le
Centre canadien de lutte contre l’alcoolimse et les toxicomanies (CCLAT) par l’entremise de son
Centre national de documentation sur les toxicomanies et grace & l’appui financier de Santé
Canada, l’Association des brasseurs du Canada et de l’Association des distillateurs canadiens.
Fetal Alcohol Exposure: Time to Know, Time to Act
April 10 - 11, 2003
Jane Hoy
“My Doctor says the occasional drink won’t hurt,
besides I only drink wine anyway”
Is it safe to drink after the second trimester? How much is too much? Is
wine better than liquor? What actually is Fetal Alcohol Spectrum disorder
anyway and how will I know if my baby is affected?
Understanding Alcohol and Pregnancy
Our children depend on it!
Prenatal exposure to alcohol can impact many areas of development
physical, mental, behavior and social.
-
“Alcohol causes injury to many organ systems but the most seriously affected
is the brain and the nervous system. It should be emphasized that the
injury to the developing brain is permanent, and can never be reversed”
(Asante, 2002)
This brain damage is now described in a number of ways:
ARND - Alcohol Related Neurodevelopmental Disorders
FAS - Fetal Alcohol Syndrome
FAE - Fetal Alcohol Effects
FASD - Fetal Alcohol Spectrum Disorder
Poole, N., Bennett, R. J. (1998)
Full description of the these conditions can be found on the website of the British
Columbia Ministry of Children and Family Development Community
Action Guide
http://www.mcf.gov.bcca/child protection/fas/index,html
-
Section 2 — understanding Fetal Alcohol Syndrome
FAS is estimated to occur in 4 per 1000 births in industrialized countries
and among heavy drinkers FAS is estimated to be 43 per 1000 live births.
(Abel EL., 1995)
Studies done in U.S., Australia, Europe, and Canada indicated that Fetal
Alcohol Syndrome is the leading cause of developmental disabilities in
western civilization. (World Health Organization, 1992). This does not take into
consideration other related conditions. Health Canada (1996) goes further
to say these disabilities are preventable among Canadian children.
The estimated health care, education and social service costs related to
FAS over a lifetime are $1.4 million (U.S.) per individual
Health Canada: FAS/FAE Resources
http://www.hc~sc.cic.ca/hppb/childhood-youth/cyfh/fas/resources.html
The Primary disabilities affecting the physical development of facial features,
growth and particularly the brain last a lifetime and will never change plus...
Children with prenatal alcohol exposure commonly have Secondary disabilities
(Streissguth, A., 1996) such as difficulty learning, attention, memory and
problem solving, learning from past experience, poor judgment, along with
a lack of coordination, impulsiveness and speech and hearing impairments
and:
#
#
#
#
#
#
#
#
90% have had mental health problems
80% were unable to live independently
80% have had problems with unemployment
60% have been suspended or drop out of school
60% have gotten in trouble with the law
50% have gone to jail or put in an institution
50% have shown inappropriate sexual behavior
3O% have become abusers of drugs or alcohol
The good news is these secondary disabilities are preventable when protective
factors are in place (Streissguth, A., 1997).
The protective factors when dealing with the identified population are early
identification, non-violent homes, clear expectations and boundaries, simplified
environments, character development, pro-social skills, life-skills for independent
living, awareness and development of healthy relationships, service and
volunteerism, contribution to society.