Transcript Fetal Alcohol Spectrum Disorders

Fetal Alcohol Spectrum Disorders
(FASD)
Brought to you by Anchorage
School District Nurses
Kim Beckett, Ruth Bogert, Luann Fogels, Jan Ilutsik, Paula Mottola,
Amy Owens, Barb Pennington, Kathy Seybert, and Susie Whited
FASD is an umbrella term used to
define the following disorders:
 Fetal Alcohol
Syndrome (FAS)
 Partial Fetal Alcohol Syndrome (PFAS)
 Fetal Alcohol Effects (FAE)
 Alcohol-Related Neurodevelopment
Disorder (ARND)
 Alcohol-Related Birth Defect (ARBD)
What is FASD?
FASD is permanent brain damage caused
by prenatal exposure to alcohol. It is a
lifelong disability and one that requires the
affected child be supported in a stable and
structured environment to maximize his or
her potential.
Number of People with a FASD
 No
one knows for certain how many
individuals are born each year with
a FASD.
 No
one knows how many
individuals are living with
a FASD.
Photo property of SAMHSA.
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Do You have a Student with FASD
in your Classroom?
 It
is likely that there are
children with FASD in
every school system.
 A school
system
with10,000 students might
have 80 to 100 students
with learning problems
related to FASD.
SAMHSA FASD Center for Excellence: asdcenter.samhsa.gov
Cause of FASD

The sole cause of FASD is women drinking
alcoholic beverages during pregnancy.
 Alcohol is a teratogen.
 There is no proven safe amount of alcohol
use during pregnancy.
“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
SAMHSA
FASD Center for Excellence: asdcenter.samhsa.gov
FASD Facts





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.
SAMHSA
FASD Center for Excellence: asdcenter.samhsa.gov
Simplified Fetal Development Chart
Physical Abnormalities associated
with FASD
EYE: crossed eyes, poor vision, optic nerve abnormalities
EAR: outer ear abnormalities, low set ears, sensory, neural hearing loss, frequent ear
infections
MOUTH and JAW: dental problems, dysfunctional movements of tongue and larynx
SKELETAL DEFECTS: missing bones, clubfoot, hand and finger deviations
ORGAN PATHOLOGY: heart problems, urogenital and genital anomalies, malformed or
missing kidney
SENSORY DEFICITS: tactile defensiveness or need for tactile stimulation
hypersensitivity to sound, taste, light, smell
IMMUNE SYSTEM: allergic reactions, altered susceptibility to infections
FASD and the Brain

Prenatal alcohol exposure causes brain
damage.

Effects of FASD last a
lifetime.

People with FASD can
grow, improve, and function well in life with
proper support.
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Areas Most Affected by Prenatal
Alcohol Ingestion
FASD and the Brain
Permission to use photo on file.
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
FASD and the Brain
A
B
C
A. Magnetic resonance imaging showing the side view of a 14year-old control subject with a normal corpus callosum; B. 12year-old with FAS and a thin corpus callosum; C. 14-year-old
with FAS and agenesis (absence due to abnormal development)
of the corpus callosum.
Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into
FAS. Alcohol Health & Research World 18(1):49–52.
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
FASD and the Brain
A
These two images are of the brain of a 9-year-old girl with
FAS. She has agenesis of the corpus callosum, and the
large dark area in the back of her brain above the
cerebellum is essentially empty space.
Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into
FAS. Alcohol Health & Research World 18(1):49–52.
SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov
+
Permanent
Lifelong
=
Brain
Damage
Alcohol KILLS a growing brain!
Parents
Parents are often aware that there is something
different about the way their child behaves and
learns but may not know exactly why that is.
Early experiences in school are often the first time
that specific concerns are raised and a family is
encouraged to seek medical
or psychological evaluations.
Typical Difficulties for Students with
a FASD
Memory Problems
 Multiplication
 Time
?
sequencing
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Information Processing
Problems

Say they understand when
they do not
Straighten
up your room
and put your
toys away.
Do you
understand?

Have verbal expressive skills that often
exceed their level of understanding

Misinterpret others’ words, actions, or body
movements

Have trouble following multiple directions
SAMHSA
YES!
(How do you
straighten up?
Make sure the
bed/chair is
straight?)
FASD Center for Excellence: fasdcenter.samhsa.gov
Sensory Integration Issues

Are overly sensitive to sensory input
•
•
•

Upset by bright lights or loud 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)
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
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

Give in to peer pressure

Have trouble with time and
money
Cannot entertain
themselves
Have trouble changing
tasks
I’m
late!
Do not accurately pick up
social cues
I’m
late!
I’m
late!
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
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
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Primary Disabilities of Students
with a FASD

Lower IQ

Impaired ability in reading,
spelling, and arithmetic
Permission to use photo on file.

Lower level of adaptive functioning;
more significantly impaired than IQ
Streissguth, et al. (1996)
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Secondary Disabilities of
Students with a FASD

Mental health
issues


Disrupted school
experience

Trouble with the law  Dependent living

Inappropriate
sexual behavior
Confinement in jail
or treatment
facilities
 Alcohol and drug
problems

Employment
problems Streissguth, et al. (1996)
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Approximate Percent of Persons
with FASD Secondary Disabilities
 = Age 6+
 = Age 12+
 = Age 21+
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Secondary Disabilities Reduced

Stable home

Recognized disabilities

Early diagnosis

Diagnosis of FASD

No violence against
oneself

Good quality home
from ages 8 to 12

More than 2.8 years
in each living
situation

Basic needs met for at
least 13 percent of life
Streissguth, et al. (1996)
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Overall Difficulties for Students
with a FASD
 Taking
in information
 Storing
information
 Recalling
information when necessary
 Using
information appropriately in a
specific situation
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Faces of FASD

The different ‘faces’ of FASD. Sometimes
the condition is not physically obvious
and the brain damage of prenatal
exposure to alcohol is not detected until
much later in life

“19 in 20 FASD afflicted children have
no obvious physical characteristics of
FAS.”

“The most vulnerable children are those
without physical characteristics of FAS”
Characteristic facial features in children of
different ethnicities with fetal alcohol spectrum
disorders. (A) Child of Northern European
descent. (B) Native American child. (C) Black
child. (D) Biracial child - Black/White.
Class Notes - May 28, 2008
Diagnosing Fetal Alcohol
Syndrome

Prenatal maternal alcohol use

Growth deficiency

Central nervous system
abnormalities

Dysmorphic features
•
Short palpebral fissures
•
Indistinct philtrum
•
Thin upper lip
Source: Astley, S.J. 2004. Diagnostic Guide for Fetal Alcohol Spectrum
Disorders: The 4-Digit Diagnostic Code, Third Edition. Seattle: University of
Washington Publication Services, p. 114.
SAMHSA
Caucasian
African American
FASD Center for Excellence: fasdcenter.samhsa.gov
FASD and Mental Health
Disorders
 Prenatal
alcohol exposure may lead
to severe behavioral, cognitive, and
psychiatric problems
DSM-IV
 FASD
is not a psychiatric disorder
 FASD
can co-occur with a mental
health or substance abuse disorder
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Risks to a Child of Not
Accurately Identifying and
Treating FASD
 Loss
of family
 Increased
substance use
 Premature
death
Photo courtesy of Microsoft.
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Strategies To Improve Outcomes
for Students with a FASD
Sensory Integration Issues
 Simplify the student’s
environment
 Provide a lot of one-to-one
physical presence
 Take steps to avoid sensory triggers
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Strategies To Improve Outcomes
for Students with a FASD
Strategies for Memory Problems

Provide one direction or rule at a
time and review rules regularly.

Use a lot of repetition.
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Strategies To Improve Outcomes
for Students with a FASD
Strategies for Information Processing
Problems

Check for understanding
 Use literal language
 Teach the use of calculators and
computers
 Look for misinterpretations of words or
actions and discuss them when they occur
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Strategies To Improve Outcomes
for Students with a FASD
Strategies for Executive Function Deficits

Establish achievable goals

Use short-term consequences
specifically related to the behavior

Provide skills training and use
a lot of role playing.
Photo property of SAMHSA.
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Strategies To Improve Outcomes
for Students with FASD
Self-Esteem and Personal Issues

Use person-first language (e.g., “child with FASD,”
not “FASD child”)

Do not isolate the student

Do not blame students for what they cannot do

Set the student up for success
Congratulations
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Avoid Assumptions
 The
biggest mistake many professionals
make in working with students with FASD
is thinking that, because they said it, they
are capable of doing it without ongoing
assistance.
 It takes them longer to process.
 In a verbal-only instructional setting,
students with FASD may understand only
every third word.
Please Remember

Punishing a child with FASD for a behavior
resulting from brain dysfunction is like punishing
a blind child for bumping into the furniture.
 Never, ever punish a child with FASD for
forgetting.
 Students with FASD are developmentally
younger than their chronological age. When
determining age appropriate behavior, their
developmental age is roughly half their
chronological age.
Basic Classroom Accommodations

Adequate levels of supervision

Structure and routine

Language that is appropriate and individual to
the student
More Strategies…
Role play, Social stories, Puppets, Sign Language, Modeling
with pictures, Give a concrete list, Use repetition, Inform
student if schedule will change, Peer tutor, Seating
accommodations, Personalize rules with their names, Do
not use “why” questions, Teacher or peer escorts, Visual or
verbal reminder when end of recess is approaching, Use
color coding, Use video instruction, Use rhythm, rhyme and
rap, Computer based learning programs, Flashcards,
Rephrasing, Physical guidance, Provide extra time, Create a
safe place in each classroom
Strategies for Working with
Secondary Students
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
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Always make concrete statements, not generalizations
Consequences must be adaptable
Consistency in schedules or routines
Consistency reduces stress
Interpreter is needed to guide them through life due to naiveté
Listen
Make personal relationships early on
Music and rhythm make a difference, use it whenever possible
Never punish a child with FASD for bad behavior
Patience and a sense of humor are crucial
Strategies for Working with Secondary
Students, continued…
Pay attention to bullying, many FASD children are being mistreated
 Power struggles do not work, practice what to do, never what NOT to do
 Provide a safe place when student is in “overload” for relaxation and
de-escalation
 Redefine success, help the child be successful today
 Slow the pace by using sign language, pictures, and peer helpers
 Success one day at a time, build habit patterns for the future
 Think of FASD as a disability of language rather than of behavior
 Try alternative instructional modalities (if one way does not work, try
another)
 Use multi-sensory modalities as much as possible Realize that
developmental age is approximately one half of cognitive age
 When reviewing rules, have the student write his/her own name in front of
the rule so the rule will directly apply

“SOAP” Strategy

S - If a student with FASD is finding it frustrating or
difficult to do something, Stop the activity
 O - Observing a child’s actions in a busy classroom can
be difficult; it is essential, however, especially if the
situation involves conflict with the child or you are feeling
frustrated
 A - Assess your observations of a child’s behavior in
terms of differences in his or her brain function. The
child is not being bad; the brain is damaged
 P - Successful Plans are creative. Accommodating
children, rather than trying to change or “fix” them,
means a greater likelihood of success
Transitions
 Pay
attention to all Transitions; Elementary
to Middle School… Middle to High
School…High School to Adult Life.
 Planning should begin well before the
move to the new setting to give ample time
for placement choices and orientation.
 Requires ongoing teaching of daily living
skills.
Eight “Magic Key” Strategies in
Responding to Students with
FASD

Concrete
 Consistency
 Repetition
 Routine

Simplicity
 Specific
 Structure
 Supervision
“Making a Difference” 2006 Government of Yukon
Strengths of Students with a
FASD

Friendly

Determined

Likable

Have points of
insight

Desire to be liked

Not malicious

Helpful
Dubovsky, Drexel University College of Medicine (1999)
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
More Strengths of Students with
a FASD



Cuddly and
cheerful

Energetic and hard
working

Fair and cooperative

Spontaneous,
curious, and
involved Permission to use photos on file.
Happy in an accepting
and supportive
environment
Loving, caring, kind,
sensitive, loyal, and
compassionate
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Even More Strengths of
Students with a FASD

Highly verbal

Kind with younger
children
and
animals

Highly moral—deep
sense of fairness

Able to participate in
problem solving with
appropriate support
SAMHSA
FASD Center for Excellence: fasdcenter.samhsa.gov
Public Challenge and
Responsibility
 The
statement that FASD students do not
“grow up”, but just “get older” with the
same behaviors and patterns and needs is
an important concept to understand.
 As a community, it is imperative to
recognize, strategize and plan for the
future of these individuals in our society.
Children with a FASD grow
up blaming themselves for a
disability that is…
100% Preventable
Our VISION for the future…
0% Disabilities
ASD Resources
 School
Nurse
 School Psychologist
 FASD Tool Kit – usually held by Lead
SpEd teacher
 STEP Center 742-3867
http://www.asdk12.org/depts/step/
Fetal Alcohol Syndrome
Resources
http://fasstar.com/InternetGuide.htm
Overall guide for Internet resources on FASD
http://fasstar.com/
Teresa Kellerman’s website
http://fetalalcoholsyndrome.org/
FAS family resources
http://www.nofas.org/resource/results.aspx?ST=2&Name=Alaska
National organizaion on Fetal Alcohol Syndrome
http://faceproject.org/
Resource, training, and action on alcolol related issues
http://fasdconnections.ca/
Jan Lutke’s website
http://fasday.com/
Information on activities surrounding FAS Day (September 9)
http://fasalaska.com/linksresource.html
Links to FAS resources
http://www.asdk12.org/depts/step/
ASD Step Center. A resource center for students, educators, and parents
http://www.stonesoupgroup.org/
Statewide organization who provides support for families with special needs
http://www.providence.org/alaska/tchap/neuro/default.htm
Dr. Ron Brennan
http://www.fasworld.com/links.asp
Links to FAS resources on the web
http://www.fasworld.com/links.asp
http://www.come-over.to/FAS/store/books.htm
Link to books on FASD
References
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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.