FETAL ALCOHOL SPECTRUM DISORDERS:RELEVANCE TO FOSTER CARE.

Understanding, Identifying, and Helping theHighest Risk Babies, Children, & Caregivers

Ann Streissguth Fetal Alcohol & Drug Unit

University of Washington Medical SchoolSeattle

http://depts.washington.edu/fadu/1-20-05

FETAL ALCOHOL SPECTRUM DISORDERS:RELEVANCE TO FOSTER CARE

Ann Streissguth 9:30-10:30Nancy Whitney 10:30-10:50Break 10:50-11:10Therese Grant 11:10-12:00Julie Gelo 12:00-12:30Group Discussion 12:30-1:30Adjourn 1:30

- IN GRATITUDE -THIS RESEARCH FUNDED BY:

National Institute on Alcohol & AlcoholismCenters for Disease Control

Indian Health ServiceSpencer Foundation, Thrasher Foundation

UW Alcoholism & Drug Abuse InstituteFoundations Fund for Research in PsychiatryUW Medical Student Research Training PrgmUW Royalty Research Fund, Dana Foundation

Center for Substance Abuse PreventionMarch of Dimes, Robert Wood Johnson

Washington State DSHS

This Work is Done by a TeamThis Work is Done by a Team-- In GratitudeIn Gratitude -- My Colleagues:My Colleagues:

•• David Smith & Ken Jones, 1973David Smith & Ken Jones, 1973

•• Jim Hanson, John Graham, Sterling Clarren, Jon Aase Jim Hanson, John Graham, Sterling Clarren, Jon Aase •• Paul Paul LemoineLemoine, Philippe Dehaene, Philippe Dehaene

•• Donald Martin, Donald Martin, Helen Barr, Paul Sampson, Fred BooksteinHelen Barr, Paul Sampson, Fred Bookstein

•• Joan Martin, Sharon L. Ramey, Cindy Herman, Betty DarbyJoan Martin, Sharon L. Ramey, Cindy Herman, Betty Darby

•• Heather C. Olson, Robin Heather C. Olson, Robin LaDueLaDue, , Paul Connor, Janet HugginsPaul Connor, Janet Huggins

•• Therese Grant, Cara Ernst, Pam PhippsTherese Grant, Cara Ernst, Pam Phipps

•• David David HaynorHaynor Christine Gleason, Raymond Christine Gleason, Raymond SzeSze

•• Kieran OKieran O’’Malley, Kay Kelly, Eric SchnapperMalley, Kay Kelly, Eric Schnapper

““23,000 children (Birth to age 5)23,000 children (Birth to age 5)are accepted into are accepted into

Child ProChild Protective Services each year.tective Services each year.

Case files are opened on nearlyCase files are opened on nearly5,000 with child abuse & neglect5,000 with child abuse & neglect

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WASHINGTON STATEWASHINGTON STATE

Seattle Times, Dec 3, 2004: Debra Seattle Times, Dec 3, 2004: Debra RonnholmRonnholm & Rep. Ruth & Rep. Ruth KajiKaji

““Therapeutic treatment available forTherapeutic treatment available foronly 250 of the 4,800 childrenonly 250 of the 4,800 children

designated to need help.designated to need help.

State Budget is only $7 million State Budget is only $7 million per year for neglected & abused infantsper year for neglected & abused infants

Approximately 1% of state fundingApproximately 1% of state fundingfor correctionsfor corrections ““

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WASHINGTON STATEWASHINGTON STATE

Seattle Times, Dec 3, 2004: Debra Seattle Times, Dec 3, 2004: Debra RonnholmRonnholm & Rep. Ruth & Rep. Ruth KajiKaji

Past Month Alcohol, Tobacco, and Illcit Drug Use by Age Group

SOURCE: Substance Abuse and Mental Health Services Administration, Summary of Findings from the 2000 National Household Survey on Drug Abuse, NHSDA Series H-13, Rockville, MD.

16.4 15.69.7

7.24.6

56.8

42.9

15.9 13.6

5.9

49

28.9

4.2 3 1.7

Alcohol Tobacco ANY Illicit Drug MJ Illicit other than MJ0

10

20

30

40

50

60

70

80

90

100% reporting

12 to 17 18 to 25 26 and older

BOTH THE MOTHERBOTH THE MOTHERAND THE INFANTAND THE INFANT

ARE OUR TARGETSARE OUR TARGETS

For Prevention and Intervention:

Fetal Alcohol Spectrum Disorders

Fetal Alcohol Syndrome (FAS) 1973(Face Growth Brain) Jones,Smith, Hanson, Clarren

Fetal Alcohol Effects (FAE) 1976(Examined & exposed, some alc. effects, not FAS)

Alcohol-Related Neurodevelopmental Disorders (ARND) 1996

Institute of Medicine,1996

Static Encephalopathy: Alcohol Exposed 1997Sterling Clarren, Susan Astley,

UW FAS Diagnostic Clinic 206-685-9888

FAS

Central Nervous System Dysfunction Organic Brain Damage

• Hyperactivity, attentional deficits• Intellectual deficits, learning disorders• Problems with memory, language & judgment• Developmental delay, microcephaly• Fine & gross motor problems, seizure disorder• Mental retardation, structural brain damage

Growth Deficiency

Specific Pattern of Facial Anomalies

FAE

Central Nervous System Dysfunction Organic Brain Damage

• Hyperactivity, attentional deficits• Intellectual deficits, learning disorders• Problems with memory, language & judgment• Developmental delay, microcephaly• Fine & gross motor problems, seizure disorder• Mental retardation, structural brain damage

ARND

Central Nervous System Dysfunction Organic Brain Damage

• Hyperactivity, attentional deficits• Intellectual deficits, learning disorders• Problems with memory, language & judgment• Developmental delay, microcephaly• Fine & gross motor problems, seizure disorder• Mental retardation, structural brain damage

Behavioral Effects Following Prenatal Alcohol Exposure

Humans

Hyperactivity, reactivityAttn. deficits, distractibilityLack of inhibitionMental retard, learning diff.Reduced habituationPerservationFeeding difficulties Gait abnormalitiesPoor fine/gross motor skillsDev. delay (motor, soc., lang.)Hearing abnormalitiesPoor state regulation

Animals

Activity exploration, reactivityDecreased attentionInhibition deficitsImpaired associative learningImpaired habituationPerservationFeeding difficultiesAltered gaitPoor coordinationDevelopmental delayAltered audi. evoked potentials Poor state regulation

Driscoll, Streissguth, Riley1990

YASR, BSI

Behavioral Ratings

Alcohol & Drug Use

Delivery Day 1

BrazeltonNeonatal

Scale

NaturalisticObservations

HumanEmbryology

MedicalRecords

Neuro-pathology

DysmorphologyExam

BaselineSuckingPressure

OperantHeadturningor Sucking

Bayley Mental &Motor Exam

Behavior RatingsMeasurementsParent Interview

Health HxProblems

Environment

NIMH AttentionBattery

Memory batteryCognitive/Motor

BatteryMeasurementsPhotographs

Behavior RatingsHealth InterviewAdolescent

questionnaireParent Interview

Health HxProblemsEnvironment

WISC-R (IQ)WRAT-RNeurobehavioralBattery

CPT VigilanceMeasurementsPhotographs

Behavior RatingsParent Interview

Health HxProblemsEnvironment

WPPSI (IQ)Fine Motor TestTPT Tactual

Performance TestGross Motor TestVigilance TestActivityAssessmentMeasurements

PhotographsBehavior RatingsParent Interview

Health HxProblemsEnvironment

DysmorphologyExam

Hospital Lab Mail Lab

MaternalInterviewat Home

v v

Home

CaldwellHOME

at 12 MonthsTeacher ratings

(Myklebust)at 8 Years

Teacher ratings-Behavior-Academics

AchievementTest Scores

STUDY DESIGNSEATTLE LONGITUDINAL PROSPECTIVE STUDY ON ALCOHOL AND PREGNANCY

(prenatal through 30 years)

WAIS-R (IQ)TONI-IIWRAT-RWord Attack/

Passage Comp Attn/concentrationMemory batteryExecutive FunctionMeasurementsPhotographs

Subject Interview

Parent InterviewYABCLModified HOME

Neuromotor/Attn

SCID, BSIAlc/Drug Use &

Exams

Current Status

MeasurementsPhotographs

Behavior Ratings

Interview

Day 2 8 m 18 m 4 yr 7 yr 8 yr 11 yr 14 yr 21 yr 25 yr

250

1529

250

5th mPrg

Brazelton Exam, Reflexes, Pressure Transducer

Day 1 or 2

Sucking Pressure …Poorer

Latency to Suck .…. Poorer

State Lability ……… Poorer

Habituation: Light* ..Poorer

Reflexes …………… Poorer* Outcome most salient for prenatal alcohol across first 7 years of life.

Streissguth et al., 1993. The Enduring Effects of Prenatal Alcohol Exposure on Child Development. Ann Arbor, MI: U of Michigan Press

Outcomes most salient for prenatal alcohol

Summary: Birth cohort study

• Significant across life: Birth to 21 years• Generally dose-dependant

without clear thresholds• Resistant to covariate adjustment• Binge pattern particularly harmful

Prenatal alcohol effects are:

Neurobehavioral effects are:

• Stronger than physical• Not mediated by birth weight

• Excessive cell death• Reduced cell proliferation• Migrational errors in brain development• Inhibition of nerve growth factor• Disruption of neurotransmitters

HOW DOES ALCOHOL CAUSEBRAIN DAMAGE?

ALCOHOL CAUSES:CAUSES:

SECONDARY DISABILITIES IN Fetal Alcohol Spectrum Disorders

• Not raised in a stable, nurturant home*• Not diagnosed at an early age* • 72% experienced sexual or physical abuse• Changing households every two to three years• Not receiving Developmental Disabilities Services(All were born to mothers who abused alcohol)

RISK FACTORS

For Secondary Disabilities in FASD

PROTECTIVE FACTORS

• Living in a stable & nurturant home• Receiving an early diagnosis

MULTIVARIATE ANALYSES SHOWEDTWO STRONG

PROTECTIVE FACTORS

PREVALENCE OF SECONDARY DISABILITIESAcross the Life Span

100

90

80

70

60

50

40

30

20

10

Ages 6-51 (n=408-415) Ages 21-51 (n=89-90)

%

Mental Health Problems

Disrupted School Experience

Trouble With the Law

Confinement

Inappropriate Sexual Behavior

Alcohol & Drug Problems

Dependent Living

Problems with Employment

Ages 6 - 51 Ages 21 - 51

PREVALENCE OF SECONDARY DISABILITIESby 3 Age Groups

100

90

80

70

60

50

40

30

20

10

Ages 6-11 (n=162) Ages 12-20 (n=163) Ages 21-51 (n=90)

%

Mental Health Problems

Disrupted School Experience

Trouble With the Law

Confinement

Inappropriate Sexual Behavior

Alcohol & Drug Problems

FAS in Adolescents and AdultsClinical Implications

Poor judgment………… Easily victimizedAttention deficits……… Unfocused / distractibleArithmetic disability…... Can’t handle moneyMemory problems…….. Doesn’t learn from experienceDifficulty abstracting…. Doesn’t understand

consequencesDisoriented in…………. Fails to perceive social cues

time and spacePoor frustration ……….. Quick to anger

tolerance

1. Ask if their mother had an alcohol1. Ask if their mother had an alcoholproblem?problem?

2. Ask if they sometimes 2. Ask if they sometimes do the same do the same dumb things over and over?dumb things over and over?

3. Ask if they have trouble managing 3. Ask if they have trouble managing money?money?

4. Give an informant the FABS 4. Give an informant the FABS 5. Help them get help.5. Help them get help. -

IF YOU HAVE A CLIENT LIKE THIS:

DETECTION

Incidence of FAS:

Prevalence of ARND: ≈ 3 per 1000 births

> 6 per 1000 births

Seattle Longitudinal Prospective Study: Sampson, Streissguth, et al. Teratology, 1997

Prevalence of ARND + FAS:≈ 1 per 100 births

100

80

60

40

20

0

%

Males n =14

36

08

31

46

Patients with FAS / FAE who became ParentsReasons for failure to care for children

ChildrenRemoved

ChildrenAbandoned

Females n = 30

PREVALENCE OF SECONDARY DISABILITIES:Parents vs. Non-Parents

100

90

80

70

60

50

40

30

20

10

Parents (n=44) Non-Parents (n=112)

%

DisruptedSchool

Experience

Trouble With the

Law

Alcohol /Drug

Abuse

EverHomeless

84

59

74

6271

36

68

36

DETECTION

Midsagittal4

FAS

Both landmarks callosal outlinesand

show hypervariability of exposed compared to normals

Midline Corpus Midline Corpus CallosumCallosuma a NeuroanatomicNeuroanatomic FocusFocus

of Fetal Alcohol Damageof Fetal Alcohol Damage **

100/117 (exposed detected) = 85% sensitivity100/117 (exposed detected) = 85% sensitivity49/60 (unexposed not detected) = 82% specificity49/60 (unexposed not detected) = 82% specificity

FAS vs. FAE = indistinguishableFAS vs. FAE = indistinguishableThe finding is for The finding is for HYPERVARIABILITY of SHAPEHYPERVARIABILITY of SHAPE,,

Not for mean size or volumesNot for mean size or volumes

** Bookstein, Sampson, Connor, Streissguth, 2002 Bookstein, Sampson, Connor, Streissguth, 2002 New Anatomist;New Anatomist;Bookstein et alBookstein et al, 2001, 2001 TeratologyTeratology

Corpus Corpus CallosumCallosum Shape and Shape and Neuropsychological Deficits Neuropsychological Deficits **90 adult males : 30 FAS, 30 FAE, 30 unexposed90 adult males : 30 FAS, 30 FAE, 30 unexposed

Bookstein, Streissguth, Sampson, Connor, Barr. Bookstein, Streissguth, Sampson, Connor, Barr. 2002 2002 NeuroImageNeuroImage

Excess shape variation in exposed patients relates to: Excess shape variation in exposed patients relates to:

•• Thinner CC with deficits in motor functionThinner CC with deficits in motor function•• Thicker CC with deficits in executive functionThicker CC with deficits in executive function

12 min MRI, 5 hr. test battery12 min MRI, 5 hr. test battery

Two different profiles of behaviorTwo different profiles of behavior

BEHAVIORAL PHENOTYPE: FASDPoor EXECUTIVE FUNCTION*

1. Difficulty organizing stored informationto plan future activities

2. Difficulty regulating and sequencing behavior 3. Difficulty inhibiting responses4. Lack of cognitive flexibility

(Wisconsin Card Sort, Stroop, Trails, Ruff’s Figural Fluency, Consonant Trigrams)

*Connor, Sampson,Bookstein, Barr & Streissguth 2000Developmental Neuropsychology

PMore Executive Function Problems Than Expected for IQ Level in FAS/FAE

BEHAVIORAL PHENOTYPE: FASDPoor Habituation: *

Difficulty Modulating Incoming Stimuli

1. Gets overstimulated in social situation (as in a crowded room, or among strangers)

2. Overreacts to situations with surprisingly strong emotional reactions

3. Displays rapid mood swings set off by seemingly small events

4. Has poor attention spans5. Has trouble completing tasks

*Fetal Alcohol Behavioral Scale (FABS), parent report, Streissguth Book 1997

Fetal Alcohol Spectrum DisordersFetal Alcohol Spectrum Disordersare Birth Defectsare Birth Defects

caused by caused by prenatalprenatal alcohol,alcohol,

andand

Compounded Compounded postnatallypostnatallyby the consequences of by the consequences of

a mother who abuses alcohol.a mother who abuses alcohol.

KEEP IN MIND:

How can we detect and help families at risk in our own

communities?

- Screen & detect high risk mothers, at pregnancy and delivery

- Be especially alert to mothers and babies with FASD

- Get both mothers and babies into early interventions

- Keep data on what happens

In Our Communities We Must:

Best predictor of poorchild & adult outcomes

BARC *Calculated from self-reported

frequency of 4 - 5 or more drinks per drinking occasion

*Binge Alcohol Rating CriteriaBarr & Streissguth, 2001.

Fetal Alcohol Spectrum DisordersARE NOT HOPELESS

• An early Diagnosis • Stable, Nurturant, Good Quality Home• Freedom from Personal Violence • Appropriate Institutional Supports

Can prevent secondary disabilities and enhance adult employment and independence

1. Get an early diagnosis for babies1. Get an early diagnosis for babies2. Get help for alcohol2. Get help for alcohol--abusing momsabusing moms3. Get babies into early intervention3. Get babies into early intervention4. Enlist family/peer support4. Enlist family/peer support

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WELLNESS FOR MOTHER/CHILD

1. Get a diagnosis if FASD suspected1. Get a diagnosis if FASD suspected2. Join an FASD support group2. Join an FASD support group3. Get baby into early interventions3. Get baby into early interventions4. Get trainings from foster4. Get trainings from foster--care care progrmprogrm5. Help child be the best they can be5. Help child be the best they can be6. Watch child for developmental cues6. Watch child for developmental cues7. Provide learning opportunities but7. Provide learning opportunities but

avoid overavoid over--stimulatingstimulating child w/ FASDchild w/ FASD-

WELLNESS FOR CAREGIVERS

““IT IS IN THE SHELTERIT IS IN THE SHELTEROF EACH OTHEROF EACH OTHER

THAT THE PEOPLE LIVETHAT THE PEOPLE LIVE””

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--IRISH PROVERB--