Transcript Fetal Alcohol Spectrum Disorder

Kathryn Shea, LCSW
President/CEO
The Florida Center for Early Childhood
Sarasota, FL



Crosses all socioeconomic groups. Lower
socioeconomic group: 2.6 per 1000 live births,
compared with 0.6 per 1000 live births from
middle SES group.
New estimate is 1 out of every 8 Americans are
children of problem drinkers.
FAS is now the leading known cause of intellectual
disability in the U.S., exceeding spina bifida and
down syndrome, and is the only one that is
preventable. Some research is suggesting it is the
leading cause of learning disabilities and ADHD
and is showing a high correlation with children
born with cerebral palsy.



Alcohol produces by far the most serious
neurobehavioral effects in the fetus when
compared to other drugs, including heroin,
cocaine and marijuana.*
Annual cost estimates for FAS and related
conditions in the United States range from
$75 million to $9.7 billion.*
There has been no reduction in the
proportion of women who are heavy
drinkers at the time of conception. *
* Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and
Treatment, 1996

Fetal Alcohol Syndrome is the
original name given to a cluster of
physical and mental defects
present from birth that is the
direct result of a woman’s
drinking alcoholic beverages
while she is pregnant. This year
marks the 40th anniversary of FAS
diagnosis.




Specific pattern of
facial features
Pre- and/or postnatal
growth deficiency
Evidence of central
nervous system
dysfunction
Alcohol use during
pregnancy
Photo courtesy of Teresa Kellerman
Source: http://www.depts.washington.edu/fasdpn/face.html
Facial Dysmorphology Guide
The three facial features of FAS include: short palpebral fissures, a
smooth philtrum, and a thin upper lip (Rank 4 or 5 on the LipPhiltrum Guide (with permission, Susan Astley, University of
Washington).
(Used with permission from Dr. Susan Astley,
University of Washington)
98%
89%
20%
72%
20%
29%
46%
16%
under normal height and weight
Mental and Motor Retardation
Hearing problems
Hyperactive
Autism/Aggressive/Social Problems
Heart defects
Genital deformities
Bent crooked little finger
13% Underdeveloped fingers
16% Small teeth
7-20% Cleft palate
44% Spinal dimple
35% Hair growth on back of neck
84%Microcephalic
80% Speech impediments
20% Swallowing/Feeding
58% Slack muscles
95% Facial anomalies
10% Kidney defects
25% Eye/vision problems
51% Shortened and bent
little finger
9% Hip deformities
7% Concave chest
12% Hernia
Source: Prof.Dr.med. Hermann Löser from the University Childrens Clinic, Münster, Germany. He has
followed hundreds of FAS children for over 20 years. His results are in "Ratgeber zur
Alkoholembryopathie" published by Lambertus Verlag Freiberg.
Released April 15, 2004 by NOFAS:
“Fetal Alcohol Spectrum Disorders (FASD) is
an umbrella term describing the range of
effects that can occur in an individual
whose mother drank alcohol during
pregnancy. These effects may include
physical, mental, behavioral, and/or
learning disabilities with possible lifelong
implications. The term FASD is not
intended for use as a clinical diagnosis.”
 Introduce
Screening
Tool



As a baby develops,
cells that will become
the brain and nervous
system attach to each
other.
Alcohol interferes with
this process of brain
development.
The baby’s brain may
be smaller, structurally
or functionally
damaged, with
right/left hemisphere
abnormalities.
Source: Dr. Edward Riley, Ph.D., San
Diego State Univ.,
Source: Clarren, S,K.
Mattson, et al., 1994; Mattson & Riley, 1995; Riley et al.,1995

Neurological
◦
◦
◦
◦
◦
◦
Seizures
Weakness
Persistence of Primitive reflexes
Hypotonia
Ataxia
Abnormal Motor Function







Dose of alcohol
Pattern of exposure - binge vs chronic
Developmental timing of exposure
Genetic variation
Maternal characteristics
Synergistic reactions with other drugs
Interaction with nutritional variables



Sensory Integration
begins at conception,
and continues through
childhood (maturing at
8-10 years)
Continues to be
refined throughout our
lifetime
Many children with
FASD have sensory
integration problems
Sensory Integration is a developmental
process
 Takes place in the central nervous
system
 Involves ability to take in information
through the senses, organize it in our
brains and use it to respond
appropriately

The brain must properly process
information from the senses to
develop:






concentration and organization
academic learning ability
the capacity for abstract reasoning
specialization of each side of the body
and brain
self-esteem
self-control
• SENSORY OVERLOAD
(Shutdown or Disorganized
Behavior)
• EMOTIONAL LABILITY/
IRRITABILI1Y/INSTABILITY
• DIFFICULTY IN INTERPERSONAL RELATIONSHIPS
• LEARNING PROBLEMS
• BEHAVIOR PROBLEMS
• POOR SELF-ESTEEM
• PERCEPTUAL PROBLEMS


Integration of the sensory systems is the
prerequisite for all higher level skills.
(Ayres)
“If, in the central nervous system, those
seven sensory systems are adequately
registering and processing information, all
sensorimotor development will be
supported.”
(Williams and Shellenberger)
 What
is state regulation?
◦ State is a group of characteristics
that regularly occur together; body
activity, eye movements, facial
movements, breathing pattern, and
level of response to external stimuli
(e.g., handling) and internal stimuli
(e.g., hunger).
Blackburn, S & Blakewell-Sachs (2003). Understanding the Behavior of Term . Infants. White Plains, NY:
March of Dimes Birth Defects Foundation
29
Arc of State Regulation
“dampened
down”
“Gleam in the Eye”
BRAKE
“revved
up”
Attentive,
Interested,
Engaged, Joyful
alert, not
processing
GAS
excited
nervous
shouting
agitated
angry
flooded
panicked
flat
indifferent daydreaming
withdrawn dampened
sad depressed
terror frozen
rageful
Stressor
(Constance M. Lillas, Ph.D.; 1999
Slide courtesy of A. Pinto,
Ph.D. 2005)
30

Infancy - poor sleep patterns, difficulty feeding,
fussy/irritable temperament, prolonged crying,
difficult to soothe/comfort, over/under reactive to
stimuli or sensations, difficulty forming
attachment

Toddler/Early Childhood – aggressive, highly
active and impulsive, poor attention span,
disorganized, no sense of danger, poor sleep
patterns, pica, self-injurious, poor sensory
processing and self-regulation

Latency age – poor cause/effect relationships, does
not understand rules or consequences, difficulty at
home and school, anxious, fearful, takes things that
don’t belong to them, tells stories or fabricates when
not sure how to answer, poor abstract thinking, poor
social skills, poor sensory processing

Adolescence/Adulthood - Cannot manage daily
living skills without adult supervision, overly friendly
with poor physical/verbal boundaries, poor judgment,
easily influenced by peers, might be able to state the
rule but cannot follow it, can have high verbal skills but
poor thinking skills, impulsive,
poor sensory processing

Behaviors associated with
FASD are caused by CNS
(brain) damage.

Environmental factors can
compound the problem
(domestic violence,
neglect/abuse, poverty,
teen or single parent,
parental substance abuse)

Multiple disruption from
relative or foster care
placements due to
behavior disrupts
attachment which is critical
to sound social/emotional
development
Individuals with FAS/FAE have a range of
secondary disabilities – disabilities that the
individual is not born with, and which could be
ameliorated with appropriate interventions.
Streissguth, et al., 1996
Successes take place when
we stop trying harder and
start trying differently.
 From: Fantastic Antone Succeeds
Intervention Strategies
 Assessment of Child
Strengths/Deficits in
all developmental
areas –
◦ Sensory, Motor,
Language, Cognitive,
Emotional, Social

Treatment Plan should
build on strengths,
improve deficits, and
enhance functioning
Clinical Interventions




Physical – Brain Gym, Yoga, Relaxation Techniques,
Deep Breathing, Sensory Activities, Obstacle Course
Affective – DIR based therapy, role playing, social
stories, feeling collages, feeling cards, therapeutic
games, emotional thermometer
Cognitive – Self-Talk, Problem-solving, visualspatial games, language, story building, treasure
hunts
Behavior – Positive Behavior Support Model (PBS),
Alert Program for Self-Regulation, Role Play,
Positive Peer Support/Mentoring, Video
taping/review
This is my brain!
It helps me to think and make the right choice!
k. shea,, 2002


Problem Solving
Name: _____________________
My Problem: _____________________

Hmmm. What should I do??
Ah Ha!!! I have an idea! I will _______________



MindUP™ Curriculum by the Hawn Foundation
MindUP™ for schools is an evidence-based,
CASEL accredited social and emotional
learning program that reduces stress,
improves academic performance, strengthens
abilities for concentration, encourages
emotional regulation, and nurtures optimism,
empathy, and happiness in the classroom.

Relationship Assessment
◦
◦
◦
◦

Affective tone
Parent handling of child
Child’s response to handling
Parents understanding of child’s behaviors
Relationship Interventions
◦
◦
◦
◦
DIR Model (Floor Time)
Theraplay
Child Parent Psychotherapy
Families Moving Forward (FMF)




Estimated that over 50% of women in SA
treatment have an FASD
Traditional treatment approaches are
ineffective for these women
Cognitive deficits (poor planning, poor
organization, poor memory, poor
cause/effect)
Need for FASD screening of all women
entering treatment and change of treatment
protocol to ensure success

Don't sweat the small stuff. Choose one or two critical
behaviors at a time to work on.

Be firm, yet flexible. Rigidity can increase oppositional
behavior. Remember they are not willfully trying to make
you exhausted or crazy.

Allow yourself to grieve the loss of a "whole" person.

Don't expect them to act the same as every other child
their age. They are not like children who don't have brain
damage.

Keep the mood positive. Give five times more praise to
every one correction.





Don't hurry them. Defiant behavior increases when under
pressure.
Don't take them places where they are likely to have
problems. These are most often church, restaurants, malls,
new and unfamiliar places, and events with high numbers of
people and loud noise.
Do something fun with them everyday.
Encourage their sense of humor and yours.
Advocate for their needs. It will make you feel better about
them and yourself.
Do something for yourself every day.
A good warm bubble bath with
soft music is a great way to end a
stressful day.
Kathryn Shea, LCSW
What can Case Managers/Front Line Workers
Do?

Obtain substance abuse history on mother
and family members (age of first drink,
history of rehab prior to and following
pregnancy, medical issues which might be
related to alcohol)

Obtain birth and medical records on
children in care, especially those
demonstrating developmental, learning, or
behavioral problems
What can Case Managers Do?
 Refer for Assessment of Child
Strengths/Deficits in all developmental
areas –
◦ Sensory, Motor, Language, Cognitive, Emotional,
Social (Ages and Stages for young children)
◦ Check educational placement and status (Special
Ed services, IEP, classification, behavior/learning
problems, etc.)
◦ Make referrals for specialty assessments in
needed areas (Speech, OT, PT, Mental Health,
Psychology, FASD Diagnostic Clinic)
Universal Protective Factors




Living in a stable and nurturing home for
over 72% of life;
Being diagnosed before the age of 6
years;
Never having experienced violence
against oneself;
Staying in each living situation for an
average of more than 2.8 years;




Experiencing a good quality home (10 or
more of 12 good qualities) from age 8 to 12
years;
Having applied for and been found eligible
for DDD services;
Having a diagnosis of FAS (rather than FAE);
Having basic needs met for at least 13% of
life.
SOURCE: Streissguth, 1996




Fetal alcohol
syndrome
Fetal alcohol
Spectrum
Disorders
Clinical suspect
but appear normal
Normal, but never
reach their
potential
Adapted from Streissguth
Summary
• Fetal Alcohol Syndrome is a devastating developmental
disorder that affects children born to women who drink
alcohol during pregnancy.
• Although FAS is entirely preventable, children continue to be
born to mothers who drink.
• Results of drinking during pregnancy affect the baby, the
family, and society.
• The costs of FAS and FAE are tremendous, both personally
and financially.




Fetal Alcohol Spectrum Disorders: Florida Resource
Guide. Florida Department of Children and Families. Florida
Department of Health. The Florida State University Center for
Prevention & Early Intervention Policy. A pdf version available
online
at: http://www.doh.state.fl.us/family/socialwork/pdf/fasd.pdf
A Resource Guide for Florida Educators ... FASD is a physical
disability with behavioral symptoms often .... For the purposes of
this resource manual FAS,
FAE, ...
www.fldoe.org/ese/pdf/fetalco.pdf SAMHSA - FASD Center for Excellence http://www.fascenter.samhsa.gov/
NOFAS - http://www.nofas.org/

Provides: Diagnostic,& Intervention Services
& Statewide Training
◦ Statewide FASD Diagnostic Assessments
◦ Statewide FASD Training
◦ Intervention services for children in
Sarasota County
◦ Distribution of The Truth About Alcohol
and Pregnancy Physician Rack Cards,
40,000 annually statewide
◦ Primarily funded by the DOH through legislative
appropriations (CMS Program)
Seth at 2013 O’Laughics Comedy Club







KATHRYN SHEA, LCSW
PRESIDENT & CEO
Email:
[email protected]
www.thefloridacenter.org
(941) 371-8820
For Training opportunities contact:
Michelle Moreno at
[email protected]