Fetal Alcohol Fetal Alcohol Spectrum Spectrum DisordersDisordersSusan Adubato, Ph.D.Susan Adubato, Ph.D.

Director New Jersey/NEDirector New Jersey/NEFASD FASD Education and Training CenterEducation and Training CenterUMDNJ-NJMSUMDNJ-NJMSNewark, NJNewark, NJadubatsu@umdnj.eduadubatsu@umdnj.edu

© 2012 NEW JERSEY/NE FASD EDUCATION AND TRAINING CENTER

Behold, thou shall conceive and bear a son: and now drink no wine or strong drink

Judges 13:4

Modern concept of FAS was first identified in 1968 by the French (Lemoine et al)

The term FAS was coined by Smith and Jones in the U.S. in 1973 to describe a constellation of characteristics noted in children examined by Dr. Ulleland

Collaborative Initiative on Fetal Alcohol Spectrum Disorders (NIAAA)

FAS is the leading preventable cause of IDs and DDs

U.S.: 0.5-3/ 1000 Floyd, 2006 S. Africa: 65.2-74.2/ 1000 Viljoen, 9/2005 Italy: 3.7-7.4/ 1000 May, 9/2006 Sweden: 1-5/ 1000 Sampson, 1997 Russia: Phenotypic survey- 13% strong, 45% intermediate Miller, 2006 Finland: Dysmorphology in older Autti-Ramo, 2006 children

An individual with FAS can incur a lifetime health cost of over $870,000 to as high as $4.2 mil.

In 2003, the estimated cost was $5.4 billion; direct costs were $3.9 billion and indirect costs were another $1.5 billion.

FAS and related conditions are estimated to cost between $75 million and $9.7 billion annually in the United States.

QALY reduced 17% or 11 years

FASD Center of Excellence, 2005

Which substances affect Which substances affect women and women and their fetuses the most?their fetuses the most?

AlcoholAlcohol TobaccoTobacco Heroin/ MethadoneHeroin/ Methadone Cocaine/ crackCocaine/ crack MarijuanaMarijuana Prescription AbusePrescription Abuse OTC DrugsOTC Drugs Inhalants/ Hallucinogens Inhalants/ Hallucinogens

Internet Pharmaceuticals Internet Pharmaceuticals

Methamphetamine Methamphetamine

Defining the 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. 

Fetal Development Fetal Development ChartChart

Susceptible periods Susceptible periods during developmentduring development

CAP, 2005 NOFAS

Maternal Risk Factors Maternal Risk Factors ( May ( May 2011) 2011)

Dosage (blood alcohol level)Dosage (blood alcohol level) Pattern of drinking-1/4 Americans binge drink Pattern of drinking-1/4 Americans binge drink (SAMSHA, 2011)(SAMSHA, 2011)

Timing during the gestation (all three trimesters)Timing during the gestation (all three trimesters) Advanced Age (older women(30+)more likely to drink Advanced Age (older women(30+)more likely to drink

more, and the fetus is more at risk for an FASD more, and the fetus is more at risk for an FASD (Chiodo, 2010)(Chiodo, 2010)

Genetic sensitivity and epigenetic factors Genetic sensitivity and epigenetic factors (Kober and Weinberg 2011; (Kober and Weinberg 2011; Ramsay 2010)Ramsay 2010)

Maternal metabolism/ Nutrition/Parity Maternal metabolism/ Nutrition/Parity Active teratogenic metabolitesActive teratogenic metabolites Synergy with other agents (environmental/ other drugs)Synergy with other agents (environmental/ other drugs) Mental health issues and supportsMental health issues and supports

Between 1978-2005, UCSD looked at the alcohol Between 1978-2005, UCSD looked at the alcohol consumption of 992 women, every 3 months during consumption of 992 women, every 3 months during pregnancy. For every additional drink they consumed, their pregnancy. For every additional drink they consumed, their babies had a 16% greater chance of being born smaller, and babies had a 16% greater chance of being born smaller, and more likely to have birth defects ( Healthland, 2012).more likely to have birth defects ( Healthland, 2012).

37% of all pregnancies are unplanned (CDC, 2012)37% of all pregnancies are unplanned (CDC, 2012)

One in twelve women admit to drinking during One in twelve women admit to drinking during pregnancy; one in thirty say they binge, or consume pregnancy; one in thirty say they binge, or consume 5+ drinks in one sitting. (5+ drinks in one sitting. (March of Dimes, 2012March of Dimes, 2012))

Alcohol Crosses Alcohol Crosses the Placentathe Placenta

Alcohol passes freely from the Alcohol passes freely from the mother to the fetusmother to the fetus

The fetal liver cannot The fetal liver cannot metabolize alcohol efficientlymetabolize alcohol efficiently

Blood alcohol levels are Blood alcohol levels are equivalent between the woman equivalent between the woman and fetus by 1 hr.and fetus by 1 hr.

(Cohen-Kareem, 2002)(Cohen-Kareem, 2002)

AlcoholAlcohol levels in amniotic fluid levels in amniotic fluid are lower but persist for longer are lower but persist for longer (Burd, L. 2007)(Burd, L. 2007)

Risks of Consuming Risks of Consuming AlcoholAlcohol

First trimester First trimester Cell damageCell damage Brain damageBrain damage Substantial structural changesSubstantial structural changes

Second trimester Second trimester Poor nutrition can retard the growth of tissue and organsPoor nutrition can retard the growth of tissue and organs Risk of miscarriageRisk of miscarriage

Third trimesterThird trimester Lower birth weight/overall amount of growthLower birth weight/overall amount of growth Increase likelihood of early labor and deliveryIncrease likelihood of early labor and delivery Intellectual DisabilityIntellectual Disability

( ( March of Dimes, 2000)March of Dimes, 2000)

Brain Regions Brain Regions Affected by AlcoholAffected by Alcohol

Structural Changes Structural Changes in the Brainin the BrainIn the top picture the brain of a In the top picture the brain of a non-surviving child with FAS is non-surviving child with FAS is shown on the left next to that of a shown on the left next to that of a non-surviving child’s brain non-surviving child’s brain without FAS.without FAS.

The extent of malformation in the The extent of malformation in the child’s brain with FAS was not child’s brain with FAS was not compatible with life.compatible with life.

The same brain is shown below. The same brain is shown below. Note the lack of internal Note the lack of internal structures such as the corpus structures such as the corpus callosum which connects the two callosum which connects the two hemispheres.hemispheres.

What is FAS?What is FAS?

Fetal Alcohol Syndrome (FAS) Fetal Alcohol Syndrome (FAS) is a life long birth defect caused is a life long birth defect caused by maternal consumption of by maternal consumption of alcohol during pregnancy.alcohol during pregnancy.

FAS Diagnostic CriteriaFAS Diagnostic Criteria Growth RestrictionGrowth Restriction: :

Babies are born smaller than anticipated for the gestational Babies are born smaller than anticipated for the gestational age at birth, and usually remain so throughout life.age at birth, and usually remain so throughout life.

Central Nervous SystemCentral Nervous System:: Any or all of the following conditions may be present– Any or all of the following conditions may be present–

intellectual disabilities, developmental delays, short attention intellectual disabilities, developmental delays, short attention span, impulsivity, perceptual problems, hyperactivity, poor span, impulsivity, perceptual problems, hyperactivity, poor coordination & learning disabilitiescoordination & learning disabilities..

Facial AnomaliesFacial Anomalies:: Babies have the following distinctive facial features--small widely Babies have the following distinctive facial features--small widely

spaced eyes; a short, upturned nose; a smooth philtrum (no notch spaced eyes; a short, upturned nose; a smooth philtrum (no notch between the nose and lips); abnormally thin upper lip; and small flat between the nose and lips); abnormally thin upper lip; and small flat cheekscheeks. .

(CDC, 2005)(CDC, 2005)

( ( Reprinted with permission, Streissguth A.P., & Little, R.E. 1994)Reprinted with permission, Streissguth A.P., & Little, R.E. 1994)

FAS – Only the tip of FAS – Only the tip of the icebergthe iceberg Fetal Alcohol Spectrum Fetal Alcohol Spectrum

DisordersDisorders is a descriptive term is a descriptive term used for the broad spectrum of used for the broad spectrum of disorders caused by prenatal disorders caused by prenatal exposure to alcohol includingexposure to alcohol including::

Fetal Alcohol SyndromeFetal Alcohol Syndrome PFAS (Partial FAS)PFAS (Partial FAS) FAE (Fetal Alcohol Effects)FAE (Fetal Alcohol Effects) ARND (Alcohol Related Neuro-ARND (Alcohol Related Neuro-

developmental Disorders)developmental Disorders) ARBD (Alcohol Related Birth ARBD (Alcohol Related Birth

Defects)Defects)

FASDFASD

Fetal Alcohol Spectrum Disorders is anFetal Alcohol Spectrum Disorders is an

umbrella term describing the range of effects that can umbrella term describing the range of effects that can occur in an individual whose mother drank during occur in an individual whose mother drank during pregnancy. These effects may include physical, mental, pregnancy. These effects may include physical, mental, behavioral, and /or learning disabilities with possible behavioral, and /or learning disabilities with possible lifelong implications. The term FASD is not intended lifelong implications. The term FASD is not intended for use as a clinical diagnosisfor use as a clinical diagnosis..

CDC July CDC July 20042004

FAS

FASD

FAEARND

ARBD

Partial FAS

Problem Domains of Problem Domains of Individuals with Prenatal Individuals with Prenatal Alcohol exposureAlcohol exposure

Cognition/Intellectual FunctioningCognition/Intellectual Functioning

Activity and AttentionActivity and Attention HyperactivityHyperactivity Focusing, encoding, shiftingFocusing, encoding, shifting

Learning and MemoryLearning and Memory Auditory, spatial, design, and narrative memoryAuditory, spatial, design, and narrative memory Working memoryWorking memory Intrusion, perseveration, false-positive errorsIntrusion, perseveration, false-positive errors Comprehension, math reasoningComprehension, math reasoning

Problem Domains of Problem Domains of Individuals with Prenatal Individuals with Prenatal Alcohol exposure (cont)Alcohol exposure (cont)LanguageLanguage

Social communicationSocial communication Word comprehension, naming ability, articulationWord comprehension, naming ability, articulation Expressive and receptive language skills Expressive and receptive language skills

Motor Abilities Motor Abilities Fine and gross motor dysfunctionFine and gross motor dysfunction Delayed motor developmentDelayed motor development Speed/precision, grip strengthSpeed/precision, grip strength

Processing AbilitiesProcessing Abilities Spatial memory, processing of visual and auditory informationSpatial memory, processing of visual and auditory information Difficulties in motor control and functioningDifficulties in motor control and functioning

Problem Domains of Problem Domains of Individuals with Prenatal Individuals with Prenatal Alcohol exposure (cont)Alcohol exposure (cont)

Other Neuropsychological Abilities/Executive Other Neuropsychological Abilities/Executive FunctioningFunctioning Behavioral and emotional regulation-impulsivity, labilityBehavioral and emotional regulation-impulsivity, lability Planning/organizationPlanning/organization Abstract thinking/judgmentAbstract thinking/judgment

Sensorimotor IntegrationSensorimotor Integration

Social Skills and Adaptive behaviorSocial Skills and Adaptive behavior

Mental Health IssuesMental Health Issues

Clinical Implications of Clinical Implications of Impairments for Individuals Impairments for Individuals with FAS/FASDwith FAS/FASD Impulsivity and poor self-regulation, which decreases Impulsivity and poor self-regulation, which decreases

tolerance for frustration, and makes them quick to tolerance for frustration, and makes them quick to angeranger

Poor habituation which results in drowning in Poor habituation which results in drowning in stimulation, emotional overload, shutting down and stimulation, emotional overload, shutting down and behaving irrationallybehaving irrationally

Perseveration which leads to doing the same thing Perseveration which leads to doing the same thing over and over againover and over again

Clinical Implications of Clinical Implications of Impairments for Impairments for Individuals with Individuals with FAS/FASD (cont)FAS/FASD (cont) Poor judgment which leads to trusting anybody and Poor judgment which leads to trusting anybody and

behaving irrationallybehaving irrationally

Difficulty with self reflection which leads to not Difficulty with self reflection which leads to not being able to express ones’ needs and not getting helpbeing able to express ones’ needs and not getting help

Common Disorders Common Disorders Identified with FASDIdentified with FASD

Asperger’s DisorderAsperger’s Disorder Attention Deficit Attention Deficit

Hyperactivity Disorder Hyperactivity Disorder (ADHD)(ADHD)

Autistic DisorderAutistic Disorder Borderline Personality Borderline Personality

DisorderDisorder Conduct DisorderConduct Disorder AnxietyAnxiety Reactive Attachment Reactive Attachment

DisorderDisorder

DepressionDepression Learning DisabilityLearning Disability Oppositional-Defiant Oppositional-Defiant

DisorderDisorder Post Traumatic Stress Post Traumatic Stress

Disorder (PTSD)Disorder (PTSD) Receptive-Expressive Receptive-Expressive

Language DisorderLanguage Disorder Eating DisordersEating Disorders

Secondary Disabilities Secondary Disabilities Resulting from the Resulting from the Primary Disabilities of Primary Disabilities of Individuals with Individuals with FAS/FASDFAS/FASD 60% have trouble with the law60% have trouble with the law

50% will be confined in prison ,mental institutions and/or 50% will be confined in prison ,mental institutions and/or treatment centerstreatment centers

35% have alcohol and/or drug problems35% have alcohol and/or drug problems 61% have disrupted school experience61% have disrupted school experience 49% exhibit inappropriate sexual behavior49% exhibit inappropriate sexual behavior Other :joblessness, homelessness, inability to demonstrate Other :joblessness, homelessness, inability to demonstrate

effective caretaking and parenting, and increase potential for effective caretaking and parenting, and increase potential for victimization, need for lifelong supervisionvictimization, need for lifelong supervision

-Streissguth 2004-Streissguth 2004

Universal Protective Universal Protective FactorsFactors

Early diagnosisEarly diagnosis

Stable, nurturing home environmentStable, nurturing home environment

No violence/victimizationNo violence/victimization

Early Intervention servicesEarly Intervention services

DDD servicesDDD services

Streissguth, 2004Streissguth, 2004

Reconceptualizing the Reconceptualizing the Behavior of the Behavior of the Individual with FASDIndividual with FASD

Professionals, family members, and caretakers need to Professionals, family members, and caretakers need to reconceptualize how we view the behavior of a individual with reconceptualize how we view the behavior of a individual with FAS/FASDFAS/FASD

From seeing: From seeing: To understanding: To understanding:

Won’t Can’tLazy Tries hardLies Fills inDoesn’t try Exhausted or can’t startDoesn’t care Can’t show feelingsRefuses to sit still Over stimulatedFussy, demanding OversensitiveResisting Doesn’t “get it”

Common Positive Common Positive Characteristics of Characteristics of Individuals with FASDIndividuals with FASD

Many individuals with FASD are:Many individuals with FASD are:

Caring, kind, loyal, nurturing and Caring, kind, loyal, nurturing and compassionatecompassionate

Trusting, loving, determined, committed and Trusting, loving, determined, committed and persistentpersistent

Curious, involved, fair and cooperativeCurious, involved, fair and cooperative Energetic, hard working and athleticEnergetic, hard working and athletic Artistic, musical and creatively intelligentArtistic, musical and creatively intelligent

Best PracticeBest Practice One prevention model contains seven basic components, form the One prevention model contains seven basic components, form the

acronym acronym SCREAMSSCREAMS SStructure: a regular routine with simple rules and concrete, one step tructure: a regular routine with simple rules and concrete, one step

instruction, paired with examplesinstruction, paired with examples CCues: verbal, visual, or symbolic reminders can counter the memory ues: verbal, visual, or symbolic reminders can counter the memory

deficitsdeficits RRole models: family, friends, TV shows, movies that show healthy ole models: family, friends, TV shows, movies that show healthy

behavior and life stylesbehavior and life styles EEnvironment: minimized chaos, low sensory stimulation, modified to nvironment: minimized chaos, low sensory stimulation, modified to

meet individual needs.meet individual needs. AAttitude: understanding that behavior problems are primarily due to ttitude: understanding that behavior problems are primarily due to

brain dysfunctionbrain dysfunction MMedications: most often the right combination of meds can increase edications: most often the right combination of meds can increase

control over behaviorcontrol over behavior SSupervision: 24/7 monitoring may be needed for life due to poor upervision: 24/7 monitoring may be needed for life due to poor

judgment, impulse control.judgment, impulse control.

Guiding principlesGuiding principles Think:Think: “Stretched Toddler”. “Stretched Toddler”.

Remember:Remember: “Individuals with FASD “Individuals with FASD will always need an will always need an

external brain.” external brain.”

Acknowledge:Acknowledge: Interventions must be Interventions must be useful to, useful to, and usable by and usable by the individual in the individual in order to order to be an intervention. be an intervention.

Foster:Foster: Inter-dependence. Inter-dependence.

Reflect:Reflect: Respect. Respect.

Promote:Promote: Self-worth.Self-worth.

Guiding principlesGuiding principles Support:Support: Self-esteem.Self-esteem.

Understand:Understand: That FASD is not “Chicken Pox.” That FASD is not “Chicken Pox.” You can’t catch it and it never goes You can’t catch it and it never goes away.away.

Shift:Shift: From a “non-compliance” From a “non-compliance” model to a “non-model to a “non- competence” model.competence” model.

Accept: Accept: Individuals with FASD do the Individuals with FASD do the best they can with what they’ve best they can with what they’ve got got

at that time.at that time.

Believe:Believe: You can make a difference.You can make a difference.

Additional TipsAdditional Tips Concentrate on their strengths and talentsConcentrate on their strengths and talents

Accept individual’s limitationAccept individual’s limitation

Be consistent with everything (discipline, school, behaviors)Be consistent with everything (discipline, school, behaviors)

Use positive reinforcement often (praise, incentives)Use positive reinforcement often (praise, incentives)

REPEAT, REPEATREPEAT, REPEAT

Honor their feelingsHonor their feelings

New Jersey Regional New Jersey Regional Diagnostic CentersDiagnostic CentersSix Regional Diagnostic, treatment Six Regional Diagnostic, treatment

and educational centers wereand educational centers were

established in New Jersey in 2002.established in New Jersey in 2002.

IdentifyIdentify ScreenScreen DiagnoseDiagnose Case Management ReferralCase Management Referral Education OutreachEducation Outreach

Comprehensive Assessment Comprehensive Assessment and Management of and Management of Individuals with FAS/FASDIndividuals with FAS/FASD Team approachTeam approach

Multi-discipline assessmentMulti-discipline assessment Psychosocial historyPsychosocial history PhysicianPhysician Disciplines (Mental health, speech, OT/PT, LD)Disciplines (Mental health, speech, OT/PT, LD) Parents/caregiversParents/caregivers Social service agencies (DDD, SS, Child protective, drug treatment Social service agencies (DDD, SS, Child protective, drug treatment

centerscenters))

Case managementCase management DiagnosisDiagnosis Early intervention and trackingEarly intervention and tracking Stable home environmentStable home environment MedicationMedication Case manager/mentor in school/home/communitiesCase manager/mentor in school/home/communities Support services-family community, educational, vocationalSupport services-family community, educational, vocational Supervised housing/residential facilitySupervised housing/residential facility Special education and vocational rehabilitationSpecial education and vocational rehabilitation

Be good to me...                Stay alcohol free!

                                                               A few drinks canLast forever  

No safe time. No safe amount. No safe alcohol. Period….

NIAAA/NOFAS