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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/or learning disab
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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
5. Size Matters
6. Size Matters
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 father’s 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?
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
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
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
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 mother’s bloodstream through the placenta and into the baby’s 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
22. The study of FAS
23. FAS and the Brain
25. FAS and the Brain
26. FAS and the Brain
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
29. Developmental Stages of FASInfancy “Failure to thrive”
Tremulousness
Irritability
Low muscle tone
Feeding problems
Sleep problems
Developmental delay
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
34. Intellectual FunctionChronologic Age – 18 yr 11 mo Mean FS IQ= 68 (range 20-105)
66 (FAS)
73 (FAE)
58% had IQ < 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
38. Overall Difficulties for Persons With an FASD
Taking in information
Storing information
Recalling information when necessary
Using information appropriately in a specific situation
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 Information Processing
Say they understand when they
do not
Have verbal expressive skills that
often exceed their level of understanding
Misinterpret other’s words, actions, or body movements
Have trouble following multiple directions
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 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
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 individual’s 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
Don’t use idioms
51. Strengths of Persons With an FASD Friendly
Likable
Desire to be liked
Helpful Determined
Have points of insight
Not malicious
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
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
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@doh.hawaii.gov