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    FETAL ALCOHOL

    SPECTRUM DISORDERS

    The Basic s

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    Fetal Alcohol Spectrum Disorders(FASD): The Basics

    This presentation is broken into five sections:

    1. Understanding Fetal Alcohol Spectrum Disorders

    (FASD)

    2. Individuals With An FASDStrengths,Difficulties, and Approaches

    3. Prevention and Risk Reduction

    4. Resources5. Conclusion

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    Section 1: Understanding FetalAlcohol Spectrum Disorders (FASD)

    Section 1 includes:

    Fetal Alcohol Spectrum Disorders (FASDs)

    Diagnostic Terminology

    Facts About FASDs

    Facts About Alcohol Use Among Pregnant Women

    Cause of FASDs

    Whats a Standard Drink?

    Economic Costs of FAS

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    Fetal Alcohol SpectrumDisorders (FASD)

    Umbrella term describing the rangeof effects that can occur in anindividual whose mother drankalcohol during pregnancy.

    May include physical,mental, behavioral, and/orlearning disabilities withpossible lifelong

    implications.

    Not a diagnosis.

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    Diagnostic Terminology

    Fetal Alcohol Syndrome (FAS)

    The term FAS was first used in 1973 by Dr. DavidSmith and Dr. Ken Lyons Jones at the University ofWashington.

    While FASD describes a range of disorders, FAS is aspecific birth defect caused by alcohol use whilepregnant.

    FAS is a diagnosis: It is medical diagnosis Q86.0 in theInternational Classification of Diseases (ICD-10).

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    Other Diagnostic Terminology

    Pregnancy

    +

    Alcohol

    May result in

    Alcohol-relatedneurodevelopmentaldisorder (ARND)

    Partial FAS (pFAS)

    Fetal alcohol effects (FAE)

    Alcohol-related birthdefects (ARBD)

    Static encephalopathy (anunchanging injury to thebrain)

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    Facts About FASDs

    FASDs are the leading known cause of preventablemental retardation.1

    FASDs effect an estimated 40,000 newborns eachyear in the United States.2

    FASDs are more common than autism.3

    The effects of FASDs last a lifetime.

    People with an FASD can grow, improve, andfunction well in life with proper support.

    FASDs are 100% preventable.

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    Facts About FASDs

    No amount of alcohol consumption during pregnancy is proven

    to be safe.1

    FASDs are not caused by the biological fathers alcohol use.

    FASDs are not caused intentionally by the mother:

    Many women simply may not know when they are first

    pregnant or may not be aware of the harm that alcohol

    consumption during pregnancy can cause.

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    Facts About Alcohol UseAmong Pregnant Women

    Nearly 12 percent of pregnant women report usingalcohol in the past month.

    Past-month alcohol use among pregnant women andrecent mothers aged 15 to 44 did not change significantly

    between 2002-2003 and 2006-2007.

    Nearly 16 percent of pregnant women aged 15 to 17 usedalcohol in the past month, and they consumed an averageof 24 drinks in that month (i.e., they drank on an averageof 6 days during the past month and had an average ofabout four drinks on the days that they drank).

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    Cause of FASDs

    The sole cause of FASDs is the fetus being exposed to

    alcohol during the pregnancy.

    Alcohol is a teratogen: A drug or other substance

    capable of interfering with the development of a fetus,

    causing birth defects.

    Of all the substances of abuse (including cocaine,

    heroin, and marijuana), alcohol produces by far the most

    serious neurobehavioral effects in the fetus.

    IOM Report to Congress, 1996

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    Cause of FASDs

    All alcoholic beverages are harmful.

    Binge drinking is especially harmful.*

    While its true that not every woman who drinks during

    pregnancy will have a child with an FASD, that does notmean that these disorders are rare or random.

    Any time a pregnant woman consumes alcohol, it

    becomes possible that her baby will have an FASD.

    *Binge = 4 or more standarddrinks on one occasion for wom

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    Whats A Standard Drink?

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    Whats a Standard Drink?

    In recent research, frequent drinkers and the

    majority of women reported drinking larger-

    than-standard drinks:

    Daily drinkers were consuming drinks that wereanywhere from three to six times the size of a standard

    drink.

    The majority of drinkers underestimated the number of

    fluid ounces they were consuming by about 30%.

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    Economic Costs of FAS

    FAS alone is estimated to cost the United

    States nearly $4 billion each year.

    The average lifetime cost for each child withFAS is almost $3 million.

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    Economic Costs of FAS

    One prevented case of FAS saves:

    $130,000 in the first 5years

    $360,000 in 10 years

    $587,000 in 15 years

    More than $1 million in 30 yearsIncreased savings

    through prevention

    0

    200000

    400000

    600000

    800000

    1000000

    5 10 15 30

    ears

    $

    Saved

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    Section 2: Individuals With an FASDStrengths, Difficulties, and Approaches

    Section 2 includes: Primary Disabilities That Can Occur in Persons With an

    FASD Typical Strengths of Persons With an FASD

    Typical Difficulties for Persons With an FASD Risks of Not Accurately Identifying and Treating an

    FASD Factors Associated With Reduced Life Complications

    Identifying an FASD Possible Signs of an FASD Trends in Treatment

    P i Di biliti Th t C

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    Primary Disabilities That CanOccur in Persons With an FASD

    Lower IQ

    Impaired ability in

    reading, spelling, and

    arithmetic

    Lower level of

    adaptive functioning

    Typical Strengths of Persons

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    Typical Strengths of PersonsWith an FASD

    Friendly and cheerful

    Likable

    Desire to be liked

    Helpful

    Verbal

    Determined

    Have points ofinsight

    Hard working

    Every day is a newday!

    Typical Difficulties For

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    Typical Difficulties ForPersons With an FASD

    Sensory: May be overly sensitive to bright lights,

    certain clothing, tastes and textures in food,

    loud sounds, etc.

    Physical: Have problems with

    balance and motor

    coordination (may seemclumsy).

    Typical Difficulties For

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    Typical Difficulties ForPersons With an FASD

    Information Processing:

    Do not complete tasks or chores and may appear to beoppositional

    Have trouble determining what to do in a given situation

    Do not ask questions because they want to fit in

    Have trouble with changes in tasks and routine

    Typical Difficulties For

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    Typical Difficulties ForPersons With an FASD

    Have trouble following multiple directions

    Say they understand when they do not

    Have verbal expressive skills that often exceedtheir verbal receptive abilities

    Cannot operationalize what theyvememorized (e.g., multiplication tables)

    Misinterpret others words, actions, or bodymovements

    How do I

    straighten

    my room?

    Information Processing:

    Typical Difficulties For

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    Typical Difficulties ForPersons With an FASD

    Tend not to learn from

    mistakes or natural

    consequences

    Frequently do not respondto reward systems (points,levels, stickers, etc.)

    Have difficulty

    entertaining themselves

    Nave, gullible (e.g., may

    walk off with a stranger)

    Struggle with abstract

    concepts (e.g., time, space,

    money, etc.)

    Im late!

    Im late!

    Executive Function and Decision-Making: Repeatedly

    break the rules

    Give in to peer

    pressure

    Typical Difficulties For

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    Typical Difficulties ForPersons With an FASD

    Self-Esteem and Personal Issues:

    Function unevenly in school, work, and developmentOften feel stupid or like a failure

    Are seen as lazy, uncooperative, and unmotivatedHaveoften been told theyre not trying hard enough

    May have hygiene problems

    Are aware that theyre different from others

    Often grow up living in multiple homes and experience

    multiple losses

    Ri k f N t A t l

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    Risks of Not AccuratelyIdentifying and Treating an FASD

    For the individual with an FASD:

    Unemployment

    Loss of family

    Homelessness

    Jail Premature death

    Increased substance abuse

    Wrong treatment or

    intervention is used

    For the family:

    Loss of family Increased substance use

    Premature death

    Financial strain

    Emotional stress

    Factors Associated With

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    Factors Associated WithReduced Life Complications

    Stable home

    Early diagnosis

    No violence againstoneself

    More than 2.8 years in

    each living situation

    Recognized disabilities

    Diagnosis of FAS

    Good quality home fromages 8 to 12

    Basic needs met for at

    least 13 percent of life

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    Identifying an FASD

    Only trained professionals can diagnose a disorder fromthe FASD spectrum. Ideally, diagnosis is done by a teamthat may include:

    Geneticists

    Developmental pediatricians Neurologists Dysmorphologists (physicians specializing in birth defects Education consultants

    Psychologists, psychiatrists, and social workers Occupational therapists Speech and language specialists

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    Possible Signs of an FASD

    Signs that may suggest the need for FASDassessment include:

    Sleeping, breathing, or feeding problems Small head or facial or dental irregularities

    Heart defects or other organ dysfunction Deformities of joints, limbs, and fingers Slow physical growth before or after birth Vision or hearing problems

    Mental retardation or delayed development Behavior problems Maternal alcohol use

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    Trends in Treatment

    Strategies to assist persons with an FASD and theirfamilies continue to increase dynamically:

    SAMHSAs FASD Center for Excellence provides a variety

    of materials for families, providers, and educators:

    http://fasdcenter.samhsa.gov In addition to materials, the National Organization on Fetal

    Alcohol Syndrome (NOFAS) provides a directory of FAS

    resources: www.nofas.org/resource/directory.aspx

    The Centers for Disease Control and Prevention (CDC) arecurrently researching new approaches to FASD at sites acros

    the country.

    Section 3: Prevention and

    http://fasdcenter.samhsa.gov/http://www.nofas.org/resource/directory.aspxhttp://www.nofas.org/resource/directory.aspxhttp://fasdcenter.samhsa.gov/
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    Section 3: Prevention andRisk Reduction

    Section 3 includes:

    Prevention Starts With Asking!

    Brief Interventions Can = Prevention

    Public Health Messaging We Can All Talk About Alcohol Use

    Who Needs To Know

    Raise Awareness in Schools Raise Awareness in the Community

    P ti St t With A ki !

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    Prevention Starts With Asking!

    Ask all women of childbearing age aboutalcohol use:

    Ask routinely at every medicalappointment.

    Ask at appointments in various systems.

    Ask in a nonjudgmental manner.

    Use effective screening tools.

    Ask about possible prenatal exposure.

    Imbed questions about alcohol use in general health questions(e.g., wearing seat belts, taking vitamins, smoking, etc.).

    Brief Intervention

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    Brief InterventionCan = Prevention

    Research shows that brief interventions can help reducealcohol use among women of childbearing age, whether

    pregnant or non-pregnant.

    Typical brief interventions include outreach, screening,

    referral, and other activities that promote the health of themother (and, among pregnant women, the fetus).

    Brief interventions have been effectively implemented by

    health professionals in primary care, emergency, andsubstance abuse treatment settings, and also on

    campuses.

    D

    O

    D

    O

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    O

    N

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    T

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    A

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    T

    H

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    D

    R

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    W C All T lk Ab t Al h l U

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    We Can All Talk About Alcohol Use

    Talk about the effects of alcohol on an individualand on a fetus:

    Begin at an early age, suchas elementary school.

    Indicate that stoppingdrinking at any time duringpregnancy will help thefetus.

    We Can All Talk About Alcohol Use

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    We Can All Talk About Alcohol Use

    Convey the message to women:

    Say No to Alcohol.

    For You, and for Your Baby.

    Who Needs To Know

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    Who Needs To Know

    EVERYONE!

    While FASD awareness may seem like

    its just about women who are

    pregnant, its not. Anyone who canhelp a woman remain alcohol-free

    during pregnancy should know:

    Men, women, family, friends, health

    care providers, educators

    EVERYONE!

    Raise Awareness in Schools

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    Raise Awareness in Schools

    Ask the school to put up posters

    about drinking and pregnancy.

    Include information about

    FASDs in health, science, and

    physical education classes.

    Hold an assembly to talk

    about the effects of alcohol

    on a person and on a baby.

    Raise Awareness

    http://www.cia.gov/cia/publications/facttell/jpg/cover_composite.jpghttp://www.cia.gov/cia/publications/facttell/jpg/cover_composite.jpg
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    in the Community

    Post FASD information indoctors offices, treatmentcenters, and community centers.

    Promote FASD Awareness Day(September 9). Visit the Web

    site www.fasday.com forinformation.

    Discuss FASD in yourcommunity; at work, at church,anywhere. Awareness can havea positive impact on everyone.

    Section 4: Resources

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    Section 4: Resources

    SAMHSA FASD Center for Excellence:fasdcenter.samhsa.gov

    Centers for Disease Control and Prevention FASPrevention Team: www.cdc.gov/ncbddd/fas

    National Institute on Alcohol Abuse and Alcoholism(NIAAA): www.niaaa.nih.gov/

    National Organization on Fetal Alcohol Syndrome(NOFAS): www.nofas.org NOFAS Resource Directory:

    www.nofas.org/resource/directory.aspx National Clearinghouse for Alcohol and Drug

    Information (NCADI):ncadi.samhsa.gov

    Section 5: Conclusion

    http://fascenter.samhsa.gov/http://www.cdc.gov/ncbddd/fashttp://www.niaaa.nih.gov/http://www.nofas.org/http://www.nofas.org/resource/directory.aspxhttp://ncadi.samhsa.gov/http://ncadi.samhsa.gov/http://www.nofas.org/resource/directory.aspxhttp://www.nofas.org/http://www.niaaa.nih.gov/http://www.cdc.gov/ncbddd/fashttp://fascenter.samhsa.gov/
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    Section 5: Conclusion

    Section 5 includes:

    The Benefits of Identification and Treatment of

    FASDs

    What is Needed

    The Benefits of Identification and

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    Treatment of FASDs

    Helps decrease anger and frustration forindividuals, families, providers, andcommunities by helping them understand thatnegative behavior results from the disabilityand is not willful.

    Helps people with an FASD succeed byfocusing on their strengths and what willhelp them, not on their weaknesses andwhat theyve done wrong.

    Helps improve outcomes.

    Helps prevent future births of children withan FASD.

    What is Needed

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    What is Needed

    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

    What is needed to adequately address FASDsis a paradigm shift in how we think:

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    Thank you for taking time

    to learn about FASDs!

    For more information about FASDs, including

    topics such as diagnosis and treatment, please

    visit http://www.fascenter.samhsa.gov.