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101

FASD



(DHSS)

. 5 UD1 SP09198-03.

Insights into Fetal Alcohol Spectrum Disorders

Developed by The Family and Youth Services Training Academy with a grant from the DHSS
Office of FAS with funding from the U.S. Department of Health and Human Services, Substance
Abuse and Mental Health Services Administration Grant #5 UD1 SP09198-03.

Person-

first language

, .

Language should reflect person first, then the disability

Person-first

Disability-first


FAS kid


FAS people


FAS mom

!
Think of the
person first!

Child with FAS


People with FAS

,

Mother who has a child with FAS


Objectives

,
,


,

Learn about FASD, including

terminology, facts, and effects on the body and brain

Understand primary

and secondary disabilities resulting from FASD

101
FASD 101


FASD information



Terminology

Key facts about FASD


Alaskan FASD data

()
Fetal Alcohol
Spectrum Disorders
(FASD)


()
,

.
FASD is the umbrella term that includes all
the conditions related to prenatal alcohol exposure.

What is FAS?


,
,
.

0,3 1,5
1000 .

,
-
1,5 1000
.
Fetal Alcohol Syndrome is the medical diagnosis for a permanent condition caused by prenatal alcohol exposure.

US Center for Disease Control estimates the national rate of FAS as

between .3 and 1.5 cases per 1,000.

Alaskas rate is the highest in a five-state surveillance project, at 1.5 per 1,000.

(CDC 2002)




Key Characteristics of FAS

Growth deficiency

, ,

Head, height, weight

( )
Special pattern of facial features




Small eyes

Thin upper lip

Smooth philtrum of

the upper lip

Signs of central nervous system damage

Maternal drinking during pregnancy


Who diagnoses FAS?



(

).

Multi-disciplinary teams (usually a trained medical doctor and team of experts)

assess the severity of these four independent criteria.

Beliefs About FASD

Children are negatively affected

by alcohol only if a mother drinks EARLY in pregnancy.





.
Alcohol anytime during pregnancy has the potential to cause damage.

10



Beliefs About FASD



.
Facial features
associated with FAS indicate that the brain damage is more severe.

11




.
Significant brain damage can occur without facial
characteristics of FAS.

90%


.
About 90% of those affected by prenatal
alcohol use have NO associated facial features.

12



Beliefs About FASD



FASD can be passed on genetically.

13




.
Maternal drinking during pregnancy is the only thing that causes FASD.

14



Beliefs About FASD



.
Only heavy drinking leads to FASD.

15


,


,

There is no known safe amount of alcohol to drink while pregnant and

16



Beliefs About FASD


,


.

Behavior problems associated

with FASD are the result of poor parenting.

17



.

,

,
.
Children with FASD can be very difficult to parent using traditional parenting wisdom. Behavior problems among individuals with FASD are more often
issues of frustration, unclear expectations, or other problems related to processing information and instructions.

18



Beliefs About FASD


,

,

.
Mothers of children with FASD are young, careless women who arent concerned about their substance abuse and drink despite
knowing it is bad for them and their developing baby.

19

, 2003 ,


.
A Spring 2003 survey of Alaskan doctors reveals that many are still telling women an occasional drink during pregnancy is okay.
(DHSS, FAS Update)



,
.
.
There are

significant wait lists for substance abuse treatment in Alaska, and not all treatment centers provide services to pregnant women



, ,
.
20



Beliefs About FASD

FAS is a

childhood disorder that people outgrow.

21


.
FASD is a lifelong disability.

22



Beliefs About FASD

There are no strategies to help

people with FASD.

23


,


.
There are many success stories of
individuals living healthy and happily with FASD and many useful strategies to help.

24



Beliefs About FASD

FASD is specific to certain

races or communities.

25

,

, ,


.
Fetal Alcohol Spectrum Disorders occur wherever drinking by pregnant women exists.

26




.
Alcohol Is Accepted

Alcohol is a traditional part of cultures everywhere.


,
.

, .
Alcohol is used to celebrate,

relax, and socialize.

Many people have strong


feelings about alcohol.

27


FASD Around the World


1968 .
FAS was first identified in France in 1968.



, (2005).
Surveillance and
prevention efforts are underway all over the world, including South Africa (2005).

28


Facts to Remember

(19911995)

.

Increase in female binge drinking

(1991-1995).

All alcoholic drinks can hurt a baby.


.
Research on
protective factors is inconclusive.

(NIAAA, 2008)
29


( 19992001)
FASD Prevalence in

Alaska (Birth years 1999-2001)

1 1000

1 out of 1000

births met criteria for FAS.

15,4 1000

.

15.4 out of 1000 births reported to be affected by prenatal

exposure to alcohol.

(State of Alaska FAS Surveillance Project,2008)

30

1999
Alcohol Consumption in Alaska

516 ,
,
, , 30 %

.
Enough alcohol was sold in Alaska in 1999 to add up to 516 drinks for every man, woman, and child in the state in that year, and 30% of the
population doesnt drink.


,

.
54,8 %

30 .

In many

Alaskan communities beer is cheaper than milk, fruit juice, or brand name soft drinks.

54.8% of Alaskan adults reported having at least one drink within 30

days.

(CDC,2007))31

Alcohol Consumption in Alaska

6,4 %

.
19,2 %
.

6.4% of Alaskan adults report drinking at least one drink per

day.

19.2% of Alaskan adults report binge drinking


25.3% (
18 24)

15.2 % ( 25 44)

Women of childbearing

age in the US report binge drinking at the following rates:

(CDC, 2008, Alcohol and Public Health Binge Drinking)

32

(
)

Binge Drinking


.
Four or more drinks/two hours for women.


.
Five or more drinks/two hours for men.

33


Economic Impact of Alcohol

738
2003 .

Alcohol and drug

abuse in Alaska cost more than $738 million to the economy in 2003.


:
This broke down into:

- 50%
- 24%
,
- 21%
- 5%
- <1%
productivity losses

health care

criminal justice and protective services

traffic crashes

public assistance

525,5
2003 .

Alcohol abuse alone cost $525.5 million in 2003.

(Economic costs of alcohol and other drug abuse in Alaska, 2005 Update,
Alaska Advisory Board on Alcoholism & Drug Abuse)34


Economic Impact of Alcohol



2003
47
.
The total lifetime estimated costs for fifteen cases of FAS in 2003 in Alaska was $47 million.

(McDowell Group, 2005)

35


Male Drinking


.
Alcohol consumption rates are even higher for males.


.
Male drinking can influence female drinking.

.
A fathers drinking does not cause FAS.

36


FASD Information

100% ()


.
FASD is 100% preventable.

Prevention efforts have proven to be successful.

37

Factors That Impact a Fetus


.
When and how much a mother drinks while pregnant

Mothers genetic make-up

Babys genetic make-up




.
Twins, fraternal or identical, can experience a range of affects of prenatal alcohol exposure.

38

Subtle to Obvious Problems

.
Alcohol can cause physical conditions and
birth defects

- .. ,
,
, . ( - )
Dr. K.L. Jones, Department of Pediatrics,
University Hospital. University of California at San Diego. (Reproduced
by permission of Dr. Jones).



()
More likely to cause Central
Nervous System (CNS) problems.

39

Physical Differences

Hearing and vision problems


Heart and kidney damage


Low birth weight


Cleft palate


Liver and sinus problems

-
Skeletal system

Mild facial anomalies and other minor birth

defects

40


Central Nervous System Differences

(
, ,
, )

Problems with the sensory system (over- or under-sensitivity to noise, light, touch, taste, etc.)


Learning problems


Memory impairment


Speech and language problems

41


()

Central

Nervous System Differences( cont.)


.
Difficulty with regulatory activities like sleeping and
eating



.

.

Impairment in

executive functions like planning and sequencing

Problems with visual/spatial skills

42


1.



.
Review: FASD Top Five

There is no proven safe amount of alcohol use during

pregnancy.

2.


.
Alcohol can damage the fetus at all stages.

3.


(
)
People with FASD are everywhere and in all systems of care

(diagnosed or not).

4.

.
FASD can occur in all communities.

5.


.
People with the greatest difficulty are often the ones least recognizable.

43

Diagnosing FAS

Diagnostic features:


Small eye opening


(
)
Indistinct
philtrum (groove between nose and upper lip)

10-

,
NIAAA, 2000
Reprinted from the 10th
Special Report to Congress on Alcohol and Health, NIAAA, 2000

Small head circumference

Thin upper lip

44

FASD Disabilities

Primary disabilities

Secondary disabilities

45

Primary Disabilities


Speech and language

Processing deficits


Cognition and learning

46


Speech and Language

Individuals may have trouble finding the words.

,
Can speak well, but not comprehend

, .
Can talk the talk but not walk the walk.

47

Processing Deficits

Generalizing information


Understanding rules


Abstract reasoning


Memory deficits


Time management concepts


Judgment skills


Socialization and independence

48


Generalizing Information




Difficulty linking related information

Difficulty applying information from one situation to another

49


Abstract Reasoning


.

.
,
.
Concrete vs. abstract thinking

Unable to predict outcomes

Missing meaning, humor, and insight in conversations

50


Understanding Rules

Lacks cause and effect thinking


Has trouble grasping consequences

-
Engages in black and white thinking

51

Memory Deficits

.
Poor short-term auditory memory.

.
Slow auditory pace.


.
Difficulty getting information out of long-term memory.


,

.
MRI technology correlates memory deficits with altered brain function for those with FASD.

52

/
Time Management Challenges

Sleeping /eating cycles


Problems with transition


Monthly budgeting


Making and keeping appointments

Employment

53


.
Making Judgments

Often acts before thinking.

,
.
May seem
noncompliant and willful when in fact they are simply unable.

/ .
Difficulty starting and/or stopping.

54


Socialization


.
Problem-solving issues negatively impact social interactions.


.
Inappropriate behavior/language.

Doesnt read non-verbal cues.

55



.
Independence

May have life-long needs for support and supervision.

56


Cognition and Learning

Slow processing

Concrete thinkers


:
Struggle in various academic areas:


Reading


Writing


Math

57


,
Primary Disability Summary


.
Primary characteristics associated with FASD are impaired abilities to process information, integrate sensory information,
and effectively use language.


,
-
.
Prenatal alcohol exposure can affect the way people think, use their judgment skills, and predict outcomes of actions.


, ,
,
- .
Sometimes people with FASD seem willful and defiant, when in truth they have not been
taught the basic skills necessary to understand and perform tasks.


.
People with FASD often move through developmental stages abnormally.
58

Primary

Disabilities

Amelia Bedeliaa case of FASD?


Literal thinker


Competent with clear instruction


Unique skills

59

Secondary Disabilities


()
,


.
Disabilities that a person is not born with and can be reduced or ameliorated with the right support, interventions, and accommodations.

60

Secondary Disabilities


Mental health issues


Disrupted school experience


Trouble with the law


Confinement

Inappropriate sexual behavior

Alcohol and drug problems

61

Secondary Disabilities



People with the diagnosis of FAS had fewer secondary disabilities.



(IQ)
Secondary disabilities occurred more frequently in individuals with higher IQ.

62

Characteristics of Secondary Disabilities

,
Fatigue, frustration

,
Anxiety, fearfulness

, ,
Rigid, resistant, argumentative

: ,
,
Flat affect; appear to not care, shutdown, lie

,

Poor self concept, feelings of failure and low self esteem

-
Isolation - fewer and fewer friends


Aggression

63


,

72% .
Protective Factors

Living in a stable nurturing home for most of ones life - i.e. over
72% of the time

,
6 .
Early identification of FASD,

especially before the age of 6

- .
Not a victim of violence

(Streissguth, Barr, Kogan and Bookstein, 1996)

64



The Value of a Diagnosis: Reduced Secondary Disabilities


.
From the personal collection of Mary
Lou C. Used with family permission

65




.

,
,
( 2004 )
.
Building Success

Dan Dubovsky, 2004)

66





.
..
Reframing Success

If behaviors are believed to be willful, intentional, or the result of


emotional problems




Then interventions focus
on changing behaviors.

If behaviors are
understood as reflecting brain differences




,


.
Then interventions focus on changing environments to prevent
frustration and provide support.

67

Correcting Interpretations

Behavior

Non-compliance

Misreading

Correct Interpretation


Willful misconduct

Stubborn

Attention Seeking


Makes same mistakes

Manipulative

Difficulty translating verbal


directions

Doesnt understand


Cannot link cause and effect

Willful


Often late

Lazy


Poor parenting

Out of seat behavior

Time


Organization

Willful Pest

Sensory integration

1994-2002 Deb Evensen; used with permission

68


()
Correcting Interpretations ( cont.)

Behavior

Misreading

Poor social
judgment

Correct Interpretation


Poor parenting


Willful misconduct

Abused child


Overly
physical

Does not work independently


Willful misconduct

Deviancy

Willful misconduct

Poor parenting

1994-2002 Deb Evensen; used with permission

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Keys to Success

.
Be concrete and specific.


.

.
Keep things simple.

Repeat directions, rules in new situations.


.
.
Have a routine and be consistent.

Use structure.

.
Slow down

70

, .


!
-
.

?


?
Building
Success:
Reframing
Give people with FASD longer
to answer,
develop,
and achieve.

Reteach skills in every environment they will be

used - dont assume.

Think differently.

Move from whats wrong with them to what is going on for them.

71

.
More Keys to Success

Modify the environment.

.
Modify expectations.

,
.
.
Think younger or think stage, not age.

Think perpetual innocence.

.
Make the world make sense.

, , .
Rethink, reteach, respect.

.
Fair is not the same as equal.

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Summary


,
.
Adjust expectations to reflect the reality
of the persons needs and capabilities.

,
, .
Think cognitive wheelchair.

Be an interpreter, not an interrogator.

, .
Be an investigator, not a judge.

73



.
Teaching Strategies

Computer games targeted at those with learning disabilities.



.
Concrete math curriculum with hands-on activities such as counting
money.

,

,
.
Reading aloud, listening to books on tape while reading, watching movie of
book.

74

?
,
.
.
Avoiding Burnout

Remember people with FASD are not being bad. They have brain damage.


,
.

.
.

.

.
!
Look for resources, ask questions, ask for help.

Know and use your strengths and the strengths of the individual with FASD

Admit your limits and theirs.

Plan for when you both need breaks.

Stick to your plan!

75

,


,
.
See People as Mysteries

Not problemsor people with problems.

Remember that expectations have to be realistic and appropriate to each person with FASD and not a generalization
about FASD.

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.
Understanding

Think of what it feels like to be a little out of step.

Tom Soucek, photographer. Reproduced by permission of Alaska Stock Photo,Jeff Schultz copyright owner.
(www.alaskastock.com). State of AK. Alaska Stock Photo. Soucek, T. In Step. Digitally manipulated and used with
permission.

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