Welcome to FASD training - KCSLX(1)S(gr0ykq55cwpzycnaw1ssnh55))/PDFs/1-7.pdf · Public Health...
Transcript of Welcome to FASD training - KCSLX(1)S(gr0ykq55cwpzycnaw1ssnh55))/PDFs/1-7.pdf · Public Health...
Welcome to FASD training
•Please complete the
following in your packet:
•Pretest
•Values Clarification Activity
FOUNDATIONS
OF FASD
Susan Montague LCP, LCAC
Cheryl Rathbun LSCSW
40th Annual Governor’s Conference for the Prevention of Child Abuse and Neglect
October 4th, 2016
Saint Francis Community Services
785-825-0541
Adapted from the CDC
Competency-Based
Curriculum
Development Guide for
Medical and Allied
Health Education and
Practice, 2009, 2015
Learning Objective
• To provide a framework to understand
the historical, biomedical, and clinical
significance of fetal alcohol syndrome
(FAS) and other fetal alcohol spectrum
disorders (FASDs).
Unless otherwise noted, content information contained in this PowerPoint presentation is
referenced in the Fetal Alcohol Spectrum Disorders Competency-Based Curriculum Development
Guide for Medical and Allied Health Education and Practice, Centers for Disease Control and
Prevention, 2009 available at www.cdc.gov
Learning Goal A
• Describe the basic biomedical foundation
of fetal alcohol spectrum disorders
(FASDs):
• Recognition of the Issues
• Effects of Alcohol on the Developing Embryo/Fetus
• Characteristics of FASDs
• Intervening with Individuals affected by FASD
Learning Goal B
• Explain basic clinical implications relevant to
alcohol and pregnancy:
• Preconceptional Counseling
• Prevention of Alcohol-Exposed Pregnancies
• Counseling Pregnant Women who Use(d) Alcohol
• Framework for FAS Identification, Diagnosis and
Treatment/Intervention
Learning Goal C
• Provide an overview of the epidemiological,
psychosocial, and cultural issues related to
fetal alcohol spectrum disorders (FASDs):
• Scope of the Issues
• Monitoring Prenatal Alcohol Exposure
• Prevalence of FASDs
• Costs of FASDs
• Psychosocial and Cultural Issues
Learning Goal D
• How stigma and bias may affect women
who use alcohol and other drugs, and
individuals with fetal alcohol spectrum
disorders (FASD)
AN OVERVIEW OF FETAL
ALCOHOL SPECTRUM
DISORDERS (FASD)
• Individuals affected by
prenatal alcohol exposure can
have a range of serious,
lifelong problems including
physical,
cognitive, behavioral,
and social deficits.
Photo (used with permission): Children with FAS
Terminology
• Fetal Alcohol Spectrum Disorders (FASD): an
umbrella term describing the range of effects that
can result from prenatal alcohol exposure—but is
not a diagnostic term
• Fetal Alcohol Syndrome (FAS): medical
diagnosis, usually made by a dysmorphologist,
clinical geneticist, or developmental pediatrician,
but other medical professionals can make this
diagnosis
FASD:
Relevance to Clinical Practice
High Prevalence
• Prevalence in a Midwestern city (May, 2014)
• FAS: 6- 9/1000 children
• All FASD: 24-48/1000 children (2.4% to 4.8%)
• Increased prevalence among children in child
welfare (Lange, 2013)
• FAS: 60/1000 children (6%)
• All FASD: 169/1000 children (16.9%)
FASD:
Perspectives on Prevalence• Down syndrome 1.2/1000 births
• Cleft lip+/-palate 1.2/1000 births
• Spina bifida 1/1000 births
• Autism: 12.5-14/1000
• FAS: 6- 9/1000
• All FASDs: 24 -48/1000
(May 2014)
FASD Awareness Strategies
• Universal Prevention: education and awareness for
everyone
• Selective Prevention: intervention for those at risk
• Indicated Prevention: targeted intervention for those at
greatest risk
Free awareness and education materials available from the
CDC at: www.cdc.gov/ncbddd/fasd/freematerials.html
No known amount
of alcohol is safe
during pregnancy
Public Health Messages
• Alcohol use during pregnancy increases risk of alcohol related birth defects
• No amount of alcohol consumption can be considered safe during
pregnancy
• Alcohol-related birth defects are preventable
• Pregnant women who have already consumed alcohol during pregnancy
should stop in order to minimize further risk
• Recognizing that nearly half of all births in the United States are unplanned,
women of child-bearing age should consult their physician and take steps
to reduce the possibility of prenatal alcohol exposure
• Health professionals should routinely inquire about alcohol consumption by
women of childbearing age, inform them of the risks, and advise them not
to drink during pregnancy
2005 Surgeon General’s Advisory on Alcohol Use in Pregnancy (www.cdc.gov/ncbddd/fas/fasprev.htm)
Best Public Health Message
• According to the Centers for Disease Control and
Prevention (CDC), the following is an ideal prevention
message related to alcohol consumption by women of
childbearing age:
• Women who are pregnant or could become
pregnant should not consume alcohol
Experiential Exercise
•Value Clarification Activity
CLINICAL IMPLICATIONS
How can I identify and help
children and parents with
alcohol use/abuse problems
leading to FASD?
Interventions to Prevent Alcohol-Exposed Pregnancies
• Provide all clients with information about alcohol,
contraception, and FASDs
• Provide alcohol screening to women of childbearing
age
• Provide brief alcohol intervention for women at risk
• Provide targeted alcohol treatment and promote
contraception use for women at highest risk:
• Women who have a child with an FASD
• Women with a history of alcohol abuse and/or
dependence
Standard Drink
Source: National Institute on Alcohol Abuse and Alcoholism. (2005a). Helping patients who drink too much: A clinician’s guide,
Updated 2005 Edition. NIH Pub. No. 07-3769. Bethesda, MD: U.S. Department of Health and Human Services.
Risky Drinking Definitions• Low Risk Drinking Limits
• Men:
• No more than 4 per day
• No more than 14 per week
• Women:
• No more than 3 per day
• No more than 7 per week
• Heavy or At-Risk Drinking• Drinking above low-risk levels
Binge Drinking• “…Drinking so much within about 2 hours
that blood alcohol concentration (BAC)
levels reach 0.08 grams per deciliter…”
Typically…
Women (and men > 65): > 4 drinks
Men: > 5 drinks
Women and Alcohol• 50% of non-pregnant women aged 18-44 years report
alcohol use
• 10% of non-pregnant women aged 18-44 years report
frequent or binge drinking
• An episode of “binge” drinking for
women of childbearing age is
defined as more than 3 drinks in
about a two hour period
Alcohol and Pregnancy• Women who binge drink are at increased
risk of an unintended pregnancy and an
alcohol-exposed pregnancy
• About 7.6% of pregnant women used
alcohol
• Centers for Disease Control and Prevention. Alcohol use
and binge drinking among women of childbearing age –
United States, 2006-2010. MMWR 2012;61:534-538.
IMPACT OF ALCOHOL ON PREGNANCY OUTCOMES
Potential Effects• Premature Birth
• Pre- and Postnatal Growth Retardation
• Physical Malformations
• Microcephaly
• Cognitive and Behavioral Problems
Impact of Alcohol on the Developing Embryo/Fetus
• Alcohol readily crosses the placenta:
• Fetal liver/organs unable to fully metabolize alcohol
• Embryo/fetus exposed to similar BAC (blood alcohol concentrations)
levels as mother
• Specific manifestations of prenatal alcohol exposure are
affected by timing, dose, and other fetal/maternal factors
• Some “catch-up” in fetal growth and development may
be possible if drinking stops at any time during
pregnancy
Critical Period
• Scientific studies have shown that
prenatal alcohol exposure can
effect the development of the fetus
at any point during gestation.
Timing of an Exposure• There are multiple critical periods associated
with prenatal alcohol exposure:
• 1st Trimester Drinking: risk for major morphological
abnormalities, characteristic facial features, growth
retardation, and neurological effects
• 2nd Trimester Drinking: risk for spontaneous abortion,
growth retardation, and neurological effects
• 3rd Trimester Drinking: risk for growth
retardation and neurological effects
Dose(amount of an exposure)
• Threshold Effect: There is no known
safe level of alcohol use during
pregnancy
• Dose-Response Rate: The higher the
BAC level and the longer the exposure,
the greater the risk alcohol poses to
developing embryo/fetus
Who Drinks During Pregnancy?
• Among pregnant women, the highest
prevalence of reported alcohol use was
among those who were:
• Aged 35-44 years (18.6%)
• College graduates (13.0%)
• Unmarried (4.6x married)
Tan, Denny, Cheal, Sniezek & Kanny,
2015
FAS Diagnostic Criteria• Pre- and/or Postnatal Growth Retardation
• Height and/or weight at or below 10th percentile
• Specific Facial Anomalies
• Small palpebral fissures (eye openings)
• Thin upper lip (vermillion)
• Smooth philtrum (ridge between nose and mouth)
• Central Nervous System Impairments
* Corrected for racial norms if possible.
Facial Anomalies
© Family Empowerment Network UW Medical School
Related Conditions• Partial FAS (pFAS)
• Alcohol-Related Birth Defects (ARBD)
• Alcohol-Related Neurodevelopmental
Disorder (ARND)
• Neurodevelopmental Disorder Associated
with Prenatal Alcohol Exposure (ND-PAE
DSM-5)
Partial FAS• With or without confirmed prenatal alcohol
exposure
• Two or more facial features
• One or more of following:
• Pre and/or postnatal growth retardation
• Evidence of deficient brain growth (OFC at or below 10th
percentile) or structural abnormalities
• Evidence of cognitive/behavioral abnormalities, inconsistent with
developmental level that can’t be explained by
genetics/family/environment alone
Alcohol Related Birth Defects
• Confirmed prenatal alcohol exposure
• Two or more facial features
• At least one associated congenital
structural deficit
Alcohol-Related Neurodevelopmental Disorder
• Confirmed prenatal alcohol exposure
• At least one of the following:
• Evidence of deficient brain growth (OFC-Occipitofrontal head
circumference- at or below 10th percentile) or structural
abnormalities
• Evidence of cognitive/behavioral abnormalities, inconsistent
with developmental level that can’t be explained by
genetics/family/environment alone
ND-PAE: DSM-5• Section II
• Neurodevelopmental disorder associated with
prenatal alcohol exposure (p. 86)
• 315.8 (F88)
• Section III: Conditions for Further Study
• Neurobehavioral disorder associated with
prenatal alcohol exposure (p. 798)
Spectrum of FASD
+/- OR OR
OR
As Defined in DSM-5
FAS w/out confirmed
maternal exposure
FAS
Partial FAS with or w/o confirmed exposure
FAS with confirmed
maternal exposure
Alcohol-related birth
defects (ARBD)Alcohol-related neurodevelopmental disorder (ARND)
PFAS
ARBD
ARND
ND-PAENeurodevelopmental disorder associated with prenatal alcohol exposure (ND-PAE)
Adapted from Neuroscience and Biobehavioral Reviews (2007); 31:230-238PEDIATRICS Vol. 106 No. 2 August 2000
AConfirmed
Exposure to Alcohol
BFacial
Anomalies
CGrowth
Retardation
DCNS
Abnormalities
ECognitive
Abnormalities
FBirth
Defects
Differential Diagnosis• No feature of FAS is unique to prenatal alcohol exposure
• Many genetic conditions include growth retardation and/or
CNS impairments
• Many environmental factors can lead to growth deficiencies
and/or CNS deficits (e.g. poor nutrition, abuse, neglect,
depression, lead exposure)
• Other syndromes include constellation of facial features
similar to FAS, including:
• Williams Syndrome
• Noonan Syndrome
• Dubowitz Syndrome
• Fetal Dilantin Syndrome
FAS Diagnostic Framework
Child presents for
office visit
Triggers emerge:
1. Developmental
problems
2. Facial
abnormalities
associated with
FAS
3. Growth delays
4. Prenatal alcohol
exposure
Provider
Completes initial
evaluation
1. Facial
malformations
2. Growth
abnormalities
3. Neuro-
developmental
concerns
4. Prenatal
alcohol exposure
Referral
to
Specialist
Continue to
monitor
changes in
child’s
health over
time
FAS Diagnosis
confirmed using
dysmorphic and
anthropometric
procedures along
with appropriate
neuro-
developmental
evaluation data
Multidisciplinary
intervention plan
developed
Intervention plan
is communicated
to frontline
providers,
caregivers, and
child with ongoing
exchange with the
intervention team
Case
management plan
is initiated at the
community level
based on
recommendations
Yes
No
Referral
Criteria
Met?
Provider Contact Diagnosis Services
Impact of FASDs
• The following problems are associated
with fetal alcohol spectrum disorders:
• Delayed development
• Hyperactivity
• Learning disabilities
• Behavioral problems
Photo courtesy of the University of Louisville Fetal Alcohol Spectrum Disorders (FASD) Clinic - Weisskopf Child Evaluation Center, and
the FASD Southeast Regional Training Center at Meharry Medical College Department of Family and Community
Medicine: FASDsoutheast.org. Any use of this photo requires written permission from the University of Louisville FASD Clinic -
Weisskopf Child Evaluation Center and the proper acknowledgement as written in this caption.
Impact of FASDs
• Physical Issues
• Low birth weight and growth
• Sleep and sucking problems as a baby
• Vision or hearing problems
• Problems with heart, kidneys, or bones
• Damage to part of the brain
• Speech and language delays
Impact of FASDs
• Behavioral and Intellectual Disabilities
• Poor reasoning and judgement skills
• Learning disability or low IQ (typically 79
or less)
• Hyperactivity
• Difficulty with attention
• Poor Coordination
• Difficulty in School (especially with math)
Impact of FASDs cont.
• Poor memory
• Poor ability to communicate in social
situations
• Trouble keeping a job
• Trouble with the law
• Difficulty with parenting
• Struggles with independent living
Central Nervous System Impairments
• Poor Fine and Gross Motor Coordination
• Potential Range of Cognitive Disabilities:
• Mental retardation and/or learning disabilities
(I.Q. range 30-130+)
• Developmental delays
• Speech and language deficits
• Memory and processing problems
• Attention problems and hyperactivity
Impact on Cognition
• Specific Learning Disabilities
• Poor Academic Achievement
• Discrepancy Between Verbal and
Nonverbal Skills
• Slowed Movements or Reaction to People
and Stimuli
• Poor Organization and Planning Skills
• Concrete Thinking
• Lack of Inhibition
• Poor Judgment
Impact on Executive Functioning
Impact on Motor Functioning
• Delayed Motor Milestones
• Clumsiness
• Balance Problems
• Tremors
• Poor Dexterity
Impact on Attention and Hyperactivity
• Distractibility
• Overactivity
• Difficulty Completing Tasks
• Trouble with Transitions
Impact on Social Skills• Lack of stranger fear
• Vulnerability to being taken advantage of
• Immaturity
• Superficial interactions
• Inappropriate choice of
friends
• Poor social cognition
Physical Issues•Low birth weight and growth
•Sleep and sucking problems as a baby
•Vision or hearing problems
•Problems with the heart, kidneys, or
bones
•Damage to part of the brain
•Speech and language delays
Life Long Issues• School and Social Skills Deficits
• 1 in 20 US School Children may have FASD
• Experienced by 60% of individual over age 12
• Difficulty living independently
• Mental health issues
• Substance use
• Trouble keeping a job
• Difficulty with parenting
• Trouble with the law• Experienced by 60% of individuals
Interventions for People with FASD• Diagnostic services are part of a continuum of
needed services for individuals and their families,
including:
• Medical (physician, PA, nurse, nurse practitioner)
• Mental Health (psychologist, counselor)
• Case Management (social worker, case worker)
• Education/Special Education
• Occupational, Physical, Speech/Language
Therapy
• Other Health and Allied Health Services
• Family Support and Respite
Photo: Adult with FAS (used with permission of Teresa Kellerman/ www.come-over.to/FASCRC)
Clinical Recommendations
I. Educate about FASDs
II. Conduct alcohol screening for all
women of childbearing age (e.g.
discuss quantity-frequency
questions); OR refer women for
screening
III. Conduct brief alcohol intervention for
women at risk (e.g. assess drinking
patterns, risks, symptoms); OR refer
women for intervention
IV. Refer patients/clients for alcohol
treatment, as indicated
Clinical Recommendations cont.
V. Identify individuals with possible
FASDs
VI. Screen and as appropriate diagnosis
individuals with FAS or other
FASDs; OR refer patients/clients for
FASD screening/diagnosis
VII. Manage/coordinate treatment for
individuals with FASDs
VIII. As needed, refer patients/clients with
FASDs (or suspected FASDs) to
appropriate services
Podcast Summary• Check out our short podcast for a summary of Competency I of the
CDC Competency-Based Curriculum Development Guide for Medical and Allied Health Education and Practice http://www.youtube.com/watch?v=ARPgT26dg24
Intervening with Individuals
Affected by FASD
Addressing the Needs
•Physical
•Environment/Educational
•Counseling/Therapy
•Psychopharmacologic
•Complementary Therapies
Physical• Safe living environment
• Basic protective factors
• Adequate Nutrition
• Overall Good nurtrition
• Some indication of protective properties of
nutrients
• i.e. Vitamins
• Activity/Exercise
• Adequate Sleep
Environmental & Educational Strategies
•Structure
•Predictability
•Monitored level of stimulation
•Recognized retention difficulties
•Multi-modality instruction
•Repetition
•Support
Structure• Organized, safe physical environment
• Home, work environment, school, recreational
environment
• Well defined areas that remain constant
• Small number of people
• Excess "clutter” well hidden
• Including cluttered walls
• Balance between “minimalist environment” and
some stimulation
Predictability• Staff, family members, professionals
consistent presence
• Assigned seating
• Remember those memory problems…
• Consistent routines
• School, work, home & community
schedules
• Alert in advance of activity change
• Consistent consequences
Monitored Level of Stimulation
• Protect from over-stimulation
• Supervise T.V.
• Monitor Internet use
• Monitor cell phone, electronic devices
• Monitor extraneous activities
• Learn and anticipate “danger signs”
• Give frequent, short breaks
• Re-direct behavior
Recognize Retention Difficulties
•Short sentences
•Teach 1 concept at a time
•May need to break concepts into
small steps
•Have individual repeat
information just heard
Recognize Retention Difficulties
• Teach memory strategies for daily living
skills
Meal time
Medications
School time
Sleep time
Work schedules
Appointments
• Concrete Language
Communications
•Abstract vs. Concrete
100 Adults were Surveyed…
•What word does every dog
know?
•And the Top 5 answers are…
Abstract ConceptsFAS/FAE/FDE: Educational Implication Susan Doctor, Ph.D.
Why Consequences
Wait Get Started
Listen Clean it up
Watch Do it right
Get in line Respond
Do you understand? Join
Later Ask for help
Be responsible Choose
What are you feeling? Predict, plan ahead, set
a goal
Concrete LanguageDiane Malbin, www.fascets.org
Show me Come with me
What’s easy? Now
What’s hard? Go to…
What does it make Let’s start here
you want to DO? (demonstrate)
Is there a story It’s time to go
Tell me when…
Can you draw it? What works?
Think about ‘Idioms’As easy as pie When pigs fly
Beat around the bush Pull the plug
Be up and running Pulling your leg
In the red Put a sock in it
Keep your fingers crossed No dice
Elvis has left the building Pay the piper
Timeframes•Modify timeframes
• Increased time to complete objectives
• Homework, chores, daily living activities
• Increased time for transitions and
changes
• Increased time to process and respond to
requirements
Multi-Modality Instruction
•Pictorial cues of tasks/routines
•Use of songs, music, or rhythm cues
•Use of lists
•Sign language to supplement verbal
language
•Use tape recorders and earphones
•Model behavior
Repetition
Repeat
Repeat
Repeat
Repeat
Repeat
Caution: What to Watch For
•Don’t Assume if an individual can
repeat rules that they understand them
and are capable of following them• Information processing
• Expressive vs. Receptive language
• “Masking”• i.e., waiting for others to go first
• Clue gathering
Caution: What to Watch for
• Idioms
• Watch for reactions to loud or unexpected
noises
• Behavior may be related to (or exacerbated
by) other needs
• Sleep
• Sensory
• Consider a ‘sensory diet’
• i.e.,1 hour before bedtime turn off video/computer
Counseling/Therapy
• Start counseling early
• Don’t wait for psychological or behavioral
issues to present themselves
• Focus on social skills
• Area where many people with FASD
stumble—and get into trouble
• Improvement in social skills has broad
effect on other aspects of life
Counseling/Therapy, cont.
• Modify counseling to accommodate
cognitive disability:
• Decrease stimulation in environment
• Individual vs. group counseling
• Plan session time
• Time of day
• Length of session
• Number of sessions per week
Counseling/Therapy, cont.
• Consider insight of client vs. actual
behavior• Concrete vs. Insight-oriented counseling
• Choose practical language to help client
identify issues of importance• Increase ‘concrete’ language
• Specific to the individual with FASD
• Don’t expect generalization: teach in real environments
• May require field-trips to home, work, community
Counseling/Therapy, cont.
•AA Twelve Step Facilitation
• Re-word to make more concrete
•Community Reinforcement Approach
•Contingency Management
•**Motivational Interviewing (MI) may
not be as effective in this
population
Complementary Therapies (CDC 2009)
• Biofeedback
• Relaxation therapy
• Medication
• Yoga
• Acupuncture/acupressure
• Reiki/engergy healing
• Vitamin/herbal supplements
Medication (CDC 2009)
• Stimulants
• Not a treatment for FAS(D) itself
• Address over activity, inattention, impulsivity
and some secondary condition
• Antidepressants
• Address depressive symptoms, sleep problems
• Secondary effects include school disruption,
negativity, irritability, aggression, anit-social
behavior
Medication, cont.
• Neuroleptics
• Psychotic symptoms not associated with FASD
• Can address aggression, anxiety, or behavior
regulation
• Anti-Anxiety
• Anxiety more common
• Maybe basis for underlying cause in some
psychiatric conditions
Stigma and FASD
3 main categories of stigma that exist within FASD
• Personal responsibility and blame toward biological mothers• Oversimplification, drinking culture in America
• Felt and enacted stigma experienced by childrenand families• Child is “troublemaker” or “not trying hard enough”
• Anticipated life trajectories for individuals with FASD• Destined for conflict with the law
Stigma and FASD
Alcohol, Pregnancy and Stigma
• Pregnant women who drink alcohol often
experience:
Judgmental attitudes from service providers
Feeling of shame
Depression
Low self-esteem
Fear of losing their children(Green et al., 2014)
Stigma and FASD
Caregivers and Stigma
• When parents experience persistent chronic
stress, the case is related to the perceptions
that people with disabilities are stigmatized in
the community, rather than the severity of their
child's disability
(Green et al., 2014)
Stigma and FASD
• Individuals with FASD and Stigma
• Stigma is a clinical risk factor
• Delays treatment seeking
• Worsens course and outcome of treatment
• Reduces compliance
• Increases the risk of relapse
• These risk factors can lead to:• Further disability
• Discrimination
• Isolations (Green et al., 2014)
Experiential Exercise
• The Wright Family Story
• Please get into groups of 6 to 10
• Stand in a circle shoulder to shoulder
• Each person will be given an item
• A story will be read and every time you hear any word that
sounds like “right” pass the object in your hands to the
person on your right. Every time you hear the word “left”
pass the object to the person on your left.
Exercise Questions
• How much of the story can you remember?
• What does this activity tell us about communication?
• What does this activity tell us about teamwork?
• What does this activity tell us about listening skills?
• How might a person who has been affected by prenatal substance exposer struggle?
• How might others struggle with working with someone who might have been prenatally exposed?
Tips for Providers to Reduce Stigma
• Move away from the behavior of the birth mother and onto the substance of Alcohol
Define FASD as “The range of effects that can occur when a developing baby is exposed to alcohol” vs. FASD occurs when a pregnant women drinks alcohol” (National Organization of Fetal Alcohol Syndrome)
• Continue to educate teachers, employers, service provider and families about FASD with attention to respect, inclusivity and acceptance (Green et al., 2014)
Tips for Providers to Reduce Stigma
• Support evidence-based approaches to
enable pregnant women in addressing their
alcohol use
• Keep in mind that alcohol dependence is a
chronic disease that should be treated as
any other chronic disease
(Green et al., 2014)
Tips for Providers to Reduce Stigma
• The stigma of drinking during pregnancy prevents women from speaking openly with their health care providers or their child’s pediatrician
• Stigma can also increase relapse and higher levels of alcohol exposure
(NOFAS)
Summary
• “Stigmatization is linked to depression,
anxiety disorders, aggressive behavior and
lower quality of life. Stigma marks certain
individuals as less worthy than others,
marginalizes them, and impedes their
access to needed educational and health
services.”(American Academy of Pediatrics)
Summary
• “Negative public attitudes and social beliefs
towards women who drink during
pregnancy foster a cycle of fear, blame and
shame that have far-reaching impacts on
FASD prevention, diagnosis, and treatment
across the lifespan.”
(FASD 101 Curriculum, Unpublished, 2016)
Closing•Questions
•Complete the Post Survey
Select Websites• Federal Government Sites
• CDC’s Fetal Alcohol Spectrum Disorders website: www.cdc.gov/ncbddd/fas/
• National Institute on Alcohol Abuse and Alcoholism: www.niaaa.nih.gov/
• National Institute on Drug Abuse: www.nida.nih.gov/
• Substance Abuse and Mental Health Services Administration: www.samhsa.gov/
• SAMHSA’s FASD Center for Excellence: www.fasdcenter.samhsa.gov
• Organizations
• FASD Education and Outreach Projects: www.FASDeducationl.org
• Minnesota Organization on Fetal Alcohol Syndrome (MOFAS): www.mofas.org
• The Arc of the United States: www.thearc.org
• University Sites
• Fetal Alcohol and Drug Unit of the University of Washington: depts.washington.edu/fadu/
• Fetal Alcohol Syndrome Diagnostic & Prevention Network, University of Washington:
depts.washington.edu/fasdpn/
References• Astley, S. J., Stachowiak, J., Clarren, S. K., & Clausen, C. (2002). Application of the fetal alcohol
syndrome facial photographic screening tool in a foster care population. Journal of Pediatrics,
141(5),712–717.
• Babor, T. (2003). Alcohol: No ordinary commodity. New York: Oxford University.
• Bertrand, J., Floyd, R. L., Weber, M. K., O’Connor, M., Riley, E. P., Johnson, K. A., et al. (2004). Fetal
alcohol syndrome: Guidelines for referral and diagnosis. Atlanta, GA: Centers for Disease Control and
Prevention.
• Centers for Disease Control and Prevention. (1995). Sociodemographic and behavioral characteristics
associated with alcohol consumption during pregnancy—United States, 1988. Morbidity and Mortality
Weekly Report, 44(13),261–264.
• Centers for Disease Control and Prevention. (2002a). Alcohol use among women of childbearing age—
United States, 1991-1999. Morbidity and Mortality Weekly Report, 51(13), 273–276.
• Centers for Disease Control and Prevention. (2002b). Fetal alcohol syndrome—Alaska, Arizona,
Colorado, and New York, 1995-1997. Morbidity and Mortality Weekly Report, 51, 433–435.
• Department of Agriculture & U.S. Department of Health and Human Services. (2000). Nutrition and your
health: Dietary guidelines for Americans (5th ed.). Home and Garden Bulletin No. 232.
• Dorris, M. (1989). The broken cord. New York: HarperCollins Publishers.
• Fast, D. K., Conry, J., & Loock, C. A. (1999). Identifying fetal alcohol syndrome among youth in the
criminal justice system. Journal of Developmental & Behavioral Pediatrics, 20(5), 370–372.
• Floyd, R. L., Sobell, M., Velasquez, M. M., Ingersoll, K., Nettleman, M., Sobell, L., et al. (2007).
Preventing alcohol-exposed pregnancies: A randomized controlled trial. American Journal of Preventive
Medicine, 32(1), 1–10.
• Food and Drug Administration. (1981). Surgeon General’s advisory on alcohol and pregnancy. FDA Drug
Bulletin, 11(2), 9–10.
References• Goddard, H. H. (1912). The Kallikak family: A study in the heredity of feeble-mindedness. New York:
Macmillan.
• Goodlett, C. R. & West, J. R. (1992). Fetal alcohol effects: Rat model of alcohol exposure during the
brain growth spurt. In I. S. Zagon & T. A. Slotkin (Eds.) Maternal substance abuse and the developing
nervous system (pp. 45-75). San Diego: Academic Press.
• Hankin, J. R. (2002). Fetal alcohol syndrome prevention research. Alcohol Research & Health, 26(1), 58–
65.
• Jones, K. L. (2006). Smith’s recognizable patterns of human malformation (6th ed.). Philadelphia, PA:
Elsevier Saunders.
• Jones, K. L., & Smith, D. W. (1973). Recognition of the fetal alcohol syndrome in early infancy. Lancet, 2,
999–1001.
• Jones, K. L., Smith, D. W., Ulleland, C. N., & Streissguth, A. P. (1973). Pattern of malformation in
offspring of chronic alcoholic mothers. Lancet, 1, 1267–1271.
• Karp, R. J., Quazi, Q. H., Moller, K. A., Angelo, W. A., & Davis, J. M. (1995). Fetal alcohol syndrome at
the turn of the century: An unexpected explanation of the Kallikak family. Archives of Pediatrics and
Adolescent Medicine, 149(1), 45–48.
• Lemoine, P., Harousseau, H., Borteyru, J. P., & Menuet, J. C. (2003). Children of alcoholic parents –
observed anomalies: Discussion of 127 cases. Therapeutic Drug Monitoring, 25(2), 132–136.
• Lupton, C., Burd, L., & Harwood, R. (2004). Cost of fetal alcohol spectrum disorders. American Journal of
Medical Genetics Part C (Seminars in Medical Genetics), 127C, 42–50.
• May, P. A., & Gossage, J. P. (2001). Estimating the prevalence of fetal alcohol syndrome: A summary.
Alcohol Research and Health, 25(3), 159–167.
References• May, P. A., Fiorentino, D., Gossage, J. P., Kalberg, W. O., Hoyme, H. E., Robinson, L. K., et al. (2006).
Epidemiology of FASD in a province in Italy: Prevalence and characteristics of children in a random
sample of schools. Alcoholism: Clinical & Experimental Research, 30(9), 1562–1575.
• May, P. A., Gossage, J. P., Marais, A. S., Adams, C. M., Hoyme, H. E., Jones, K. L., et al. (2007). The
epidemiology of fetal alcohol syndrome and partial FAS in a South African community. Drug and Alcohol
Dependence, 88(2-3), 259–271.
• Miller, L. C., Chan, W., Litvinova, A., Rubin, A., Comfort, K., Tirella, L., et al. (2006). Fetal alcohol
spectrum disorders in children residing in Russian orphanages: a phenotypic survey. Alcoholism:
Clinical & Experimental Research, 30(3), 531–538.
• Mitchell, K. T. (2002). Fetal alcohol syndrome: Practical suggestions and support for families and
caregivers. Washington, DC: National Organization on Fetal Alcohol Syndrome.
• National Institute on Alcohol Abuse and Alcoholism. (2000). 10th special report to the U.S. Congress on
alcohol and health. Washington, DC: U.S. Department of Health and Human Services. NIH Pub No. 00-
1583.
• National Institute on Alcohol Abuse and Alcoholism. (2005). Helping patients who drink too much: A
clinician’s guide (updated 2005 ed.). Bethesda, MD: U.S. Department of Health and Human Services.
NIH Pub. No. 07-3769.
• Office of the Surgeon General, U.S. Department of Health and Human Services. (2005). Advisory on
alcohol use in pregnancy. Retrieved August 9, 2007, from
http://www.surgeongeneral.gov/pressreleases/sg02222005.html
References• Paley, B., O’Connor, M. J., Frankel, F., & Marquardt, R. (2006). Predictors of stress in parents of children
with fetal alcohol spectrum disorders. Developmental and Behavioral Pediatrics, 27(5), 396–404.
• Sampson, P. D., Streissguth, A. P., Bookstein, F., Little, R. E., Clarren, S. K., Dehaene, P., et al. (1997).
Incidence of FAS and prevalence of ARND. Teratology, 56, 317–326.
• Streissguth, A. P. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore:
Paul Brookes Publishing Co.
• Streissguth, A. P., Barr, H. M., Kogan, J. & Bookstein, F. L. (1996). Understanding the Occurrence of
Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE).
Final Report to the Centers for Disease Control and Prevention (CDC). Seattle: University of Washington,
Fetal Alcohol & Drug Unit. Tech. Rep. No. 96-06.
• Streissguth, A. P., & Little, R. E. (1994). Alcohol: Pregnancy and the Fetal Alcohol Syndrome. In Krock
Foundation Slide Curriculum on Alcoholism, Unit 9: Alcohol and Pregnancy. Timonium, MD: Milner-
Fenwick.
• Tsai, J., & Floyd, R. L. (2004). Alcohol consumption among women who are pregnant or who might
become pregnant—United States, 2002. Morbidity and Mortality Weekly Report, 53(50), 1178–1181.
• Tsai, J., Floyd, R. L., Green, P. P., & Boyle, C. A. (2007). Patterns and average volume of alcohol use
among women of childbearing age. Maternal and Child Health Journal, 11(5), 437–445.
• Viljoen, D. L., Gossage, J. P., Adnams, C. M., Jones, K. L., Robinson, L. K., Hoyme, H. E., et al. (2005).
Fetal alcohol syndrome epidemiology in a South African Community: a second study of a very high
prevalence area. Journal of Studies in Alcohol