Fetal Alcohol Spectrum Disorders

1
Fetal Alcohol Spectrum Disorders

• Catherine A. Sorensen, Dr. P.H.
• Hawaii Department of Health
• Family Health Services Division
• Fetal Alcohol Spectrum Disorders Office

2
Fetal Alcohol Spectrum Disorders (FASD)

• Umbrella term describing the range
  of effects that can occur in
  an individual whose
  mother drank alcohol during pregnancy
• May include physical, mental, behavioral,
  and/orlearning disabilities with possible
  lifelongimplications

3
Fetal Alcohol Spectrum Disorders

• Fetal Alcohol Syndrome (FAS)
• With/without confirmed maternal alcohol exposure
• Partial FAS with confirmed maternal alcohol
  exposure
• Alcohol related birth defects (ARBD)
• Alcohol related neurodevelopmental disorder
  (ARND)
• A medical diagnosis (760.71) in the International
  Classification of Diseases (ICD)

4
Cause of FASD

• The sole cause of FASD is women drinking
  alcoholic beverages during pregnancy
• Alcohol is a teratogen

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 .
5
Size Matters
6
Size Matters
VS.
16 oz.
12 oz.
7
FASD and Alcohol

• All alcoholic beverages are harmful.
• Binge drinking is especially harmful.
• There is no proven safe amount of alcohol use
  during pregnancy.

8
FASD Facts

• 100 percent preventable
• Leading known cause of preventable mental
  retardation
• Not caused on purpose
• Can occur anywhere and anytime pregnant women
  drink
• Not caused by biologic fathers alcohol use
• Not a new disorder

9
Fetal Alcohol Syndrome

• Term first used in 1973 by Drs. Smith and Jones
  at the University of Washington
• One of the diagnoses used to describe birth
  defects caused by alcohol use while pregnant

10
What does FAS look like?
http//www.aafp.org/afp/20050715/279.html
11
Distinctive facial features
12
Number of People With an FASD

• No one knows for certain how many individuals are
  born each year with an FASD
• No one knows how many individuals are living
  with an FASD

Photo property of SAMHSA.
13
Prevalence of FAS/ARND

• FAS estimated 0.5 and 2.0 live births/1,000
• FASD estimated at least 10/1,000 or 1 of all
  births
• By Race - Blacks (range, 0.9-1.6) American
  Indian/Alaska Natives (range, 2.5-5.6)
• 1.5-3.0 million in US
• South Africa (FAS PFAS)
• 68.0 89/1,000
• Italy (FASD)
• 35/1,000 or 2 4 of all children

14
Hawaii FAS/ARND Estimates

• Estimated rates FAS - .3 ARND 1.0
• Annual FASD 22
• Total FASD 1,591
• Mental Retardation 243 (FAS 146)
• Heart Defects 738 (ARND 568)
• ADHD 635 (ARND 489)
• Speech Disorders 1,320 (ARND 1,016)
• Cerebral Palsy 23
• Autism - 26

15
Additional Hawaii Estimates

• Children in Foster Care 381
• Years in Foster Care 211 years
• Mental Illness 1,114 (ARND 857 FAS 257)
• Years in MH System 660 years

16
FAS Only the tip of the iceberg

• Other conditions within the spectrum are
  invisible underneath the surface
• Symptoms but cause unrecognized
• Appear normal, but never reach their potential

Adaped from Streissguth
17
Economic Costs of FAS

• FAS alone cost the United States more than 4
  billion in 1998
• The average lifetime cost for each child with FAS
  is 2 million
• 1.6 million for medical care services
• 0.4 million for loss of productivity

Increased costs
Lupton, Burd, and Harwood (2004)
18
Estimated Economic Costs of for Hawaii

• Total annual - 4,193, 310
• 5 Year costs - 16,959,748

19
How does the alcohol cause harm to the developing
fetus?

• Alcohol passes by mothers bloodstream through
  the placenta and into the babys circulation
• Baby has limited ability to metabolize the
  alcohol
• Alcohol kills cells
• Alcohol interferes with maturation of cells
• Alcohol interferes with migration of cells

20
The Impact of Alcohol Throughout the Pregnancy
21
The study of FAS
Alcohol affects all animals studied thus far in a
similar way to humans
22
The study of FAS
23
FAS and the Brain
Permission to use photo on file.
24
(No Transcript)
25
FAS and the Brain
26
FAS and the Brain

A
27
FASD Across the Lifespan
28
Developmental Stages of FASNewborn

• Jitteriness, tremors
• High or low muscle tone
• Disrupted sleep/wake cycles
• Poor habituation
• Poor or weak suck
• EEG abnormalities
• Sensitive to sound/noise

http//www.farr.org.za/images/pictures/baby.jpg
29
Developmental Stages of FASInfancy

• Failure to thrive
• Tremulousness
• Irritability
• Low muscle tone
• Feeding problems
• Sleep problems
• Developmental delay

http//www.come-over.to/FAS/WhoseBabyIsThis.htm
30
Developmental Stages of FASPreschool

• Small for age
• Short attention span
• Hyperactivity
• Speech delay
• Fine/gross motor incoordination
• Alert, friendly, outgoing nature
• Need for body contact

31
Developmental Stages of FASEarly School Years

• Kindergarten often delayed or repeated
• Attention deficits
• Emotional lability
• Poor impulse control
• Memory deficit
• Social intrusiveness
• Poor peer relationships
• Achievement good sometimes relative to IQ

32
Developmental Stages of FASMiddle School

• School achievement maximum
• High risk for truancy, dropout
• Apparently good verbal skills
• Impulsive nature
• Lack of social inhibition

33
FAS in Adolescents and Adults
http//www.kidscanlearn.net/images/liz12.jpg
34
Intellectual FunctionChronologic Age 18 yr 11
mo

• Mean FS IQ 68 (range 20-105)
• 66 (FAS)
• 73 (FAE)
• 58 had IQ lt 70
• Receptive Language - 8yr 2 mo

35
Adaptive Function Mean chronologic age 17 years

• Communication 7.09 years
• Daily Living 9.01 years
• Socialization 6.07 years
• Behavior Composite 7.06 years

36
Academic Function Mean Chronologic age 18 years

• Reading grade equivalent 4.05 grade
• Spelling grade equivalent 3.07 grade
• Arithmetic grade equivalent 2.08 grade

37
(No Transcript)
38
Overall Difficulties for Persons With an FASD

• Taking in information
• Storing information
• Recalling information when necessary
• Using information appropriately in a
  specific situation

Information
39
Typical Difficulties for Persons With an FASD

• Sensory Integration Issues
• Are overly sensitive to sensory input
• Upset by bright lights or noises
• Annoyed by tags in shirts or seams in socks
• Bothered by certain textures of food
• Have problems sensing where their
  body is in space (i.e., clumsy)

40
Typical Difficulties for Persons With an FASD

• Memory Problems
• Multiplication
• Time sequencing

?
41
Typical Difficulties for Persons With an FASD
Straighten up your room and put your toys away.
Do you understand?

• Information Processing
• Say they understand when they
• do not
• Have verbal expressive skills that
• often exceed their level of understanding
• Misinterpret others words, actions, or body
  movements
• Have trouble following multiple directions

YES! (How do you straighten up? Make sure the
bed/chair is straight?)
42
Typical Difficulties for Persons With an FASD

• Information Processing Problems
• Do not complete tasks or chores and may appear to
  be oppositional
• Have trouble determining what to do in a given
  situation
• Do not ask questions because they want to fit in

43
Typical Difficulties for Persons With an FASD
Executive Function Deficits

• Go with strangers
• Repeatedly break the rules
• Do not learn from mistakes or natural
  consequences

• Frequently do not respond to point, level, or
  sticker systems
• Have trouble with time and money
• Give in to peer pressure

Im late! Im late!
44
Typical Difficulties for Persons With an FASD

• Self-Esteem and Personal Issues
• Function unevenly in school, work, and
  development
• Experience multiple losses
• Are seen as lazy, uncooperative, and unmotivated
• Have hygiene problems

45
Typical Difficulties for Persons With an FASD

• Other Issues
• Cannot entertain themselves
• Have trouble changing tasks
• Do not accurately pick up
  social cues

46
Think Younger

• An 18 year old with an FASD may
• Talk like a 20 year old
• Look like an 18 year old
• Read like a 16 year old
• Comprehend like a 6 year old
• Have the social skills of a 7 year old
• Have the emotional maturity of a 6 year old

47
FASD and Secondary Disabilities
48
FASD Secondary Disabilities, University of
Washington Study

• 415 individuals FAS or PFAS
• Age range 6 to 51
• 94 Mental health
• 43 Disrupted school experiences
• 60 12 years and older trouble with law
• 50 experienced confinement in jail or treatment
  facilities

49
FASD Secondary Disabilities, University of
Washington Study, continued

• 45 engaged in inappropriate sexual behavior
• 24 of adolescents, 46 of adults, and 35
  overall had alcohol and drug problems
• 83 of adults dependent living situation
• 79 of adults had employment problems

50
Strategies To Improve Outcomes for Individuals
With an FASD

• Structure
• Simplify the individuals environment
• Provide a lot of one-to-one physicalpresence
• Take steps to avoid sensory triggers
• Provide one direction or rule at a
  time and review rules regularly
• Provide and use cues
• Dont use idioms

51
Strengths of Persons With an FASD

• Friendly
• Likable
• Desire to be liked
• Helpful

• Determined
• Have points of insight
• Not malicious

Dubovsky, Drexel University College of Medicine
(1999)
52
Strengths of Persons With an FASD

• Cuddly and
  cheerful
• Happy in an accepting and supportive environment
• Loving, caring, kind, sensitive, loyal, and
  compassionate

• Energetic and hard working
• Fair and cooperative
• Spontaneous, curious,
  and involved

Permission to use photos on file.
53
Prevention is the Only Solution

• Primary prevention
• Prevention of secondary disabilities

54
Education for all areas that care for individuals
with FASD

• Health
• Education
• Social and community services
• Legal and financial services

55
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
56

• A pregnant woman never drinks alone
• Washington State Pregnancy and Health
  Program

57
Resources

• SAMHSA FASD Center for Excellence
  fasdcenter.samhsa.gov
• Centers for Disease Control and Prevention FAS
  Prevention 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
• National Clearinghouse for Alcohol and Drug
  Information ncadi.samhsa.gov
• These sites link to many other Web sites.

58
Contact Information

• Catherine Sorensen
• Hawaii Dept. of Health
• 808.733.9018
• Catherine.sorensen_at_doh.hawaii.gov