Transcript 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 Educating Teachers, Administrators.

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
Educating Teachers, Administrators and Others Who
Work with Children in the School System.
FASD
Indiana FASD
Prevention
Taskforce
Fetal Alcohol Spectrum
Disorders:
What They Are and How They
Impact Your Students
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
www.nlm.nih.gov/hmd/greek/
greek_aristotle.html
FASD
History of Fetal Alcohol
Spectrum Disorders
• First identified in the US in 1973 by Jones and Smith,
who coined the term “fetal alcohol syndrome”
• As of 1989, all alcohol beverages sold in the US must
carry a warning that drinking during pregnancy can
cause birth defects
www.fasdcenter.samhsa.gov
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”
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
Fetal Alcohol Spectrum
Disorders (FASD)
FASD
Possible Diagnoses
+
=
– Fetal alcohol syndrome (FAS)
– Partial FAS (pFAS)
– Alcohol-related
neurodevelopmental
disorder (ARND)
– Alcohol-related birth defects
(ARBD)
FAE (fetal alcohol effects) is an older term used to describe the last three listed above.
FASD
On any given day in the
United States…
• 10,657 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
• 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. http://www.come-over.to/FASCRC
FASD
How Common is 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
Eustance LW et al., 2003
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!
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
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=
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
approximately equal to that of the mother, within
minutes of consumption
• The critical period is the entire pregnancy
FASD
The Effect of Alcohol on
a Baby’s Development
Brain and nervous system
Heart
Limbs
Lips and palate
Eyes
Ears
Development of the brain is occurring throughout
the pregnancy, which means that alcohol exposure
at any point may cause brain damage.
Figure from http://www.fda.gov/cber/gdlns/rvrpreg_fig1.gif
FASD
The Diagnosis of FAS
Defined by four criteria:
1.
2.
3.
4.
Exposure to alcohol while in the womb
Characteristic facial features
Growth problems
Involvement of the central nervous system
(the brain)
FASD
FAS Facial Features
pubs.niaaa.nih.gov
NOTE: Although these features are associated with fetal alcohol syndrome,
they may also be seen in people who do not have a FASD.
FASD
FAS Facial Features:
Smooth Philtrum and Thin Upper Lip
Smooth philtrum
(little to no groove
above upper lip)
Thin upper lip
FASD
FAS Facial Features:
Short Palpebral Fissures (Eye Openings)
Eyes are measured from the outer corner to the inner corner
FASD
FAS Facial Features
www.come-over.to/FAS/JohnGrowsUp.htm
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
Day and Richardson, 2004, AJMG 127C:28-34.
www.cdc.gov/growthcharts
FASD
Alcohol Affects
Overall Brain Size
Brain of a
healthy baby
Brain of a baby
exposed to alcohol
Photo by Sterling Clarren, MD
http://www.come-over.to/FAS/FASbrain.htm
FASD
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Alcohol Affects Brain Function
Developmental delays
Learning difficulties
Mental retardation
Speech/language disorders
Problems with memory, perception,
sensory integration, or tactile
defensiveness
FAS
Normal
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
Malbin D. 2002
A teenager with a FASD, who is 18 years old, may
function at the level of a child or adolescent
Emotional maturity
6 years
Comprehension
6 years
Social skills
Concepts of money and time
Living skills
Reading ability
Physical maturity
Skill
7 years
8 years
11 years
16 years
18 years
Developmental Age Equivalent
Adapted from: www.efsmanitoba.com/html/Final%20Paper%20Defining%20Needs%20of%20women%20with%20FAS_E2.htm
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
FASD
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
http://come-over.to/FAS/
Secondary Disabilities
www.fasdcenter.samhsa.gov
FASD
Long Term Consequences
of FAS
• Only 3% of children lived with biological mother
• Independent living was uncommon
• Poor behavior was common
• Average academic function was between 2nd
and 4th grade
(Streissguth et al. 1991)
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
Lupton, et al. 2004; Substance Abuse and Mental Health Services Administration
FASD
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Strengths of
Individuals with a FASD
Friendly
Likeable
Helpful
Determined
Loving, caring, kind,
sensitive, loyal and
compassionate
• Energetic and hardworking
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Have points of insight
Not malicious
Cuddly and cheerful
Happy in an accepting and
supportive environment
• Fair and cooperative
• Spontaneous, curious, and
involved
FASD
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Strengths of
Individuals with a FASD
Highly verbal
Highly moral with a deep sense of fairness
Kind with younger children and animals
Creative
Eager to please
FASD
Strengths of
Individuals with a FASD
• Learn by doing, by being shown, and/or by
relationship
• Learn through consistency, continuity, and
relevance
• Able to participate in problem solving with
appropriate support
• Often have a strong long-term visual memory
Working with individuals
with a FASD
FASD
Working with
Individuals with a FASD
• Build on strengths
• Use teaching strategies that focus on
these strengths
FASD
A Paradigm Shift
“We must move from viewing the individual
as failing if s/he does not do well in a
program to viewing the program as not
providing what the individual needs in
order to succeed.”
- Dubovsky, 2000
FASD
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Systems of Care for Those
with a FASD
Healthcare services
Educational services
Social and community services
Legal and financial services
FASD
Management of
Children with a FASD
• Physical, occupational, and speech therapies
• Psychiatrist or psychologist
– Medications for ADHD, anxiety, depression,
seizures, explosive behavior, etc.
– Counseling
• Pediatrician or developmental pediatrician
familiar with FASD
• Other specialists as needed
FASD
Strategies for Working with
Individuals Who Have a FASD
• For executive function deficits:
– Use short-term consequences specifically
related to the behavior
– Establish achievable goals
– Provide skills training and use a lot of role
playing
FASD
Strategies for Working with
Individuals Who Have a FASD
• For information processing problems:
– Check for understanding
– Use literal language
– Teach the use of calculators and computers
– Look for misinterpretations of words or actions
and discuss them when they occur
FASD
Strategies for Working with
Individuals Who Have a FASD
• For memory problems:
– Provide one direction or rule at a time and
review rules regularly
– Provide repetition of instructional strategies
– Use frequent reminders
FASD
Strategies for Working with
Individuals Who Have a FASD
• For sensory integration issues:
– Simplify the individual’s environment
– Take steps to avoid sensory triggers, which
may include:
• Wearing clothes with tags or clothes made of certain fabrics
• Being in overly stimulating environments (i.e. crowded and
loud places)
• Being in the presence of bright lights
FASD
Strategies for Working with
Individuals Who Have a FASD
• For self-esteem and personal issues:
– Use person-first language
– Do not isolate the person
– Address issues of grief and loss
– Do not blame people for what they cannot do
– Set the person up to succeed
FASD
Strategies for Working with
Individuals Who Have a FASD
• To facilitate communication:
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Use a slow pace and soft tone
Use simple, concrete directions and cues
Use more than one form of communication
Avoid the use of idioms
Avoid sarcasm
Use simple, clear language
FASD
Strategies for Working with
Individuals Who Have a FASD
• To facilitate learning:
– Allow longer periods to learn and/or complete
tasks
– Break skills into smaller steps
– Use concrete examples
– Teach skills in the environment in which they
are to be used
FASD
Strategies for Working with
Individuals Who Have a FASD
• Provide a stable, predictable nurturing
environment
• Concentrate on strengths and talents
• Accept the child’s limitations
• Be consistent with discipline, school, and
behaviors…
• Use positive reinforcement
• Closely supervise and be a good role
model!
• Honor the person’s feelings
• REPEAT, REPEAT, REPEAT!
FASD
Strategies for Working with
Individuals Who Have a FASD
• For teenagers:
– Focus education on job training and daily
living skills
– Closely monitor and supervise
– Moderately increase responsibilities
– Provide clear guidance/rules about
behavior
– Provide sex education
– Provide appropriate/safe recreational
activities
FASD
Strategies for Working with
Individuals Who Have a FASD
• Discipline:
– Traditional behavioral interventions
typically don’t work
– Consider whether the behaviors reflect
neurological differences
– Consider the environment
– Invite the person into to the discussion
and try to identify “stuck points”
FASD
Key Words to Remember
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Concrete
Consistent
Repetition
Routine
Simplicity
Specific
Structure
Supervision
FASD
For More Information
•
Fetal Alcohol Spectrum Disorders: Trying Differently Rather Than Harder, by
Diane Malbin, MSW. Available at www.FASCETS.org.
•
Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed
with FAS, by Leslie Evans, MS, et al. Available for download at
http://otispregnancy.org/pdf/FAS_booklet.pdf
•
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
http://www.nofas.org/estore
FASD
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References
Alan Guttmacher Institute. Facts on American teens’ sexual and reproductive health.
www.guttmacher.org/pubs/fb_ATSRH.htm
The Centers for Disease Control and Prevention. Fetal alcohol spectrum disorders.
www.cdc.gov/ncbddd/fas/fasprev.htm
Day NL and Richardson GA. 2004. 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. 2003. Fetal alcohol syndrome: A growing concern for healthcare professionals.
Journal of Obstetric, Gynecologic, and Neonatal Nursing. 32:215-221.
The Institute of Medicine. 1996 Report on FAS. http://www.come-over-.to/FAS/ IOMsummary.htm
Lupton C, et al. 2004. Cost of fetal alcohol spectrum disorders. American Journal of Medical
Genetics Part C. 127C:242-50.
Mattson SN, et al. Teratogenic effects of alcohol on brain and behavior. National Institute on
Alcohol Abuse and Alcoholism. http://pubs.niaaa.nih.gov/publications/ arh25-3/185-191.htm
Spadoni AD, et al. 2007. Neuroimaging and fetal alcohol spectrum disorders. Neuroscience and
Biobehavioral Reviews 31:239-245.
Streissguth AP, et al. 1991. Fetal alcohol syndrome in adolescents and adults. Journal of the
American Medical Association. 265(15):1961-7.
Streissguth AP, et al. 2004. Risk factors for adverse life outcomes in fetal alcohol sydnrome and
fetal alcohol effects. Developmental and Behavioral Pediatrics 25(4):228-238.
Substance Abuse and Mental Health Services Administration Fact Sheets.
http://www.fasdcenter.samhsa.gov/grabGo/factSheets.cfm
FASD
Helpful Websites
• National Organization on Fetal Alcohol Syndromewww.nofas.org
• Fetal Alcohol Syndrome, Education and Training
Services, Inc.- www.fascets.org
• The FASD Center for Excellence, Substance Abuse and
Mental Health Services Administrationwww.fascenter.samhsa.gov
• FASlink- http://www.acbr.com/fas/
• The Arc- http://www.thearc.org/fetalalcohol.html
• The Centers for Disease Control and Preventionhttp://www.cdc.gov/ncbddd/fas/default.htm
FASD
Indiana Resources
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The Fetal Alcohol Syndrome Center of Indiana - Indiana University
Medial Center
975 West Walnut Street, IB 130
Indianapolis, IN 46202
Phone: 317-274-2450 Fax: 317-274-2387
Provides diagnosis, education and patient advocacy for those affected
with prenatal alcohol exposure.
•
CNS - Center for Neurobehavioral Sciences
3010 E. State
Ft. Wayne, IN 46805
Phone: 260-471-2300 Toll Free: 1-800-901-8416
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.
FASD
Indiana Resources
• Indiana Department of Health - IN Perinatal Network (IPN),
Prenatal Substance Use Prevention Program (PSUPP)
2 N Meridian Street; Indianapolis, IN 46204
Phone: 317-233-1269
Fax: 317-233-1300
Referrals and early intervention for substance-using pregnant
women. Training for professionals.
• Indiana Protection and Advocacy Services
4701 N Keystone Avenue, Suite 222, Indianapolis, IN 46205
Phone: 800-622-4845 or 317-722-5555
Fax: 317-722-5564
Statewide agency for persons with developmental disabilities.
www.in.gov/ipas
www.health.state.mn.us/fas/catalog
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