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Bluegrass Prevention Center
Lmnagle@bluegrass.org
BLUEGRASS REGIONAL MH-MR
BOARD, INC
Fetal Alcohol
Spectrum Disorders
In This Report:
What
does FASD
Have to Do With ME
and MY Program?
How
Many Kentucky
Children and Adults
are Affected by
FASD?
Why
Focus on
Alcohol?
What Is Different
About a Brain With
FASD?
How Does FASD
Affect Kentucky’s
Systems of Care?
Kentucky Service
Systems: Current
Opinions and
Practices Regarding
FASD Issues
Although most service providers are
familiar with the term “Fetal Alcohol
Syndrome,” knowledge about the spectrum
of disabilities caused by prenatal exposure
to alcohol is less widely understood.
This leads to the question that is often
asked: I don’t work with babies or pregnant
women, so what does FASD have to do
with me and my program?
The fact is this: Prenatal alcohol exposure
causes permanent changes in the brain.
Babies with FASD grow into teenagers and
adults with FASD. Every single system of
service is affected by Fetal Alcohol
Spectrum Disorders. This includes your
system, your program.
FASD is an invisible disability. Most
people with FASD look like everyone
around them and have a typical IQ—but
have a brain that struggles with day-to-day
functioning. Imagine what life would feel
like as a 25-year-old with a brain that lacks
the ability to apply cause-and-effect logic.
Imagine what it would feel like to be the
service provider supporting this person
without knowledge of an invisible
disability.
Children, teenagers and adults with FASD
need us to re-examine our strategies,
programs and the way we look at
behaviors in order to provide them with the
best possible services and supports.
This report was prepared by Kentucky’s Prevention Enhancement Site for Fetal Alcohol
Spectrum Disorders through Bluegrass Regional Prevention Center.
Contact Laura Nagle for more information: Lmnagle@bluegrass.org.
Prevalence of
FASD in
Kentucky
Since most people with
this disability are not
currently lucky enough to
be identified or
diagnosed, all prevalence
data is based on statistics
and estimates. Nationally,
it is estimated that 1 of
every 100 births is
affected by FASD.* Using
these statistics, here is
Kentucky’s estimated
prevalence data**:
563: Number of babies
born each year with
FASD
41,632: Number of
children, teenagers and
adults in the general
population with FASD.
29,142: Number of
people with FASD
needing mental health
services
$243,071: Cost of FASD
per day in Kentucky
* National Organization on Fetal
Alcohol Syndrome (NOFAS)
**www.online-clinic.com
(Dr. Larry Burd)
What Is Different About A Brain with FASD?
Effects of Prenatal Exposure: Institute of Medicine’s 1996 Report to Congress
First of all, it is important to
acknowledge why emphasis is being
placed on alcohol instead of illicit
drugs. According to the
Institute of Medicine’s 1996 Report
to Congress, “Of all of the substances
of abuse, alcohol produces by far the
most serious neurobehavioral
effects in the fetus.” This is due to the
ability of alcohol’s tiny molecules to
pass freely through the blood-brain
barrier. The developing brain is
highly vulnerable to the effects of
alcohol at all stages of pregnancy.
Brain dysfunction is the primary
disability of FASD, and it is invisible. It
manifests itself in behaviors, such as the
following, which are common among
people living with prenatal alcohol
exposure:
•
difficulty understanding cause and
effect relationships
•
difficulty understanding abstract
concepts and phrases
•
inability to change behavior
depending on the situation /
generalize information from one
setting to another
•
inconsistent memory / poor
short-term memory
•
chronic poor judgment
Alcohol
Subnormal IQ
x
Developmental delays
x
Sensory deficits
x
Fine motor deficits
x
Attention deficits
x
Hyperactivity
x
Gross brain damage
x
Neonatal withdrawal
x
Prematurity
x
Heroin
Marijuana Tobacco Cocaine
x
x
x
x
x
x
x
x
One of the things that makes this disability so difficult
to understand is the fact that alcohol can affect any
area of the fetal brain that is developing at the time
that alcohol is present. This means that no two people
manifest this disability in the same way.
Several areas in the brain that are most commonly
affected include:
• Frontal Lobe: Controls the Executive Functioning
of the brain (judgment, impulse control,
motivation, planning ahead, sequencing,
organizing)
• Hippocampus: Responsible for memory
• Limbic System: Regulates emotional response
A person with this disability often “talks better than he
thinks,” meaning that expressive language may exceed
receptive language skills. When combined with the
fact that most people with this disability are not able to
be identified visually, the complexities of the issue
become more clear. Currently many people living
with this invisible disability are being held to
expectations that they cannot achieve without
support that recognizes and accommodates their
brain differences.
x
x
Which Kentucky Systems of Care Are Affected
by Fetal Alcohol Spectrum Disorders?
Imagine this scenario: a young
woman is seeking mental
health services from a local
therapist. She states her goals
clearly and appears motivated,
but fails to follow through on
any task they agree on. The
therapist becomes more and
more frustrated and finally
ends the relationship because
of the client’s non-compliance.
If we do not understand
FASD, we assume that a
person could do better if he
“only tried harder.” So many
of the services provided by
our systems of care (including
justice, mental health,
education, substance abuse
treatment, social services and
more) assume that all brains
are capable of thinking
abstractly, sequencing and
organizing information,
looking ahead, pulling
information from memory,
and making decisions based
on past experiences. A brain
with prenatal alcohol
exposure may not have these
advantages.
The invisible changes in the
brain caused by prenatal
exposure to alcohol manifest in
behaviors that appear as willful
misconduct: laziness,
disorganization, forgetfulness,
poor judgment, making the
same mistakes over and over
again. From the outside, it
looks like the client WON’T
comply. However, what if the
client CAN’T comply?
Just because a person looks
like everyone else and talks
very well does not mean that a
person has a brain that works
typically.
In what ways do our service
systems assume that all brains
work typically and that noncompliance is always an
indication of maladaptive
choice?
All of them.
Currently, individuals living with FASD (identified and unidentified) cause great strain on Kentucky’s
systems of care because typical strategies, sanctions and interventions assume that all brains are capable
of performing tasks involving Executive Functioning, memory and emotional regulation. This person
will likely fail repeatedly, despite involvement in programs of support. However, a person living with
identified or unidentified FASD is not a lost cause. There are concrete, practical and efficient strategies
that can provide external supports to a person living with this invisible disability.
Kentucky Service Systems: Current Opinions
and Practices Regarding FASD Issues
In 2008, Kentucky’s FASD Workgroup conducted a survey
with human service providers across the state. Respondents
included: educators, mental health clinicians, social workers,
public health staff, foster parents and substance abuse
treatment therapists. 1,348 providers responded to the survey,
representing every region of the state. The following
information was reported in this statewide survey:
Although most service providers
recognize that people with FASD can’t
always be identified visually, most do
not feel confident in their personal
ability to work effectively with a person
living with this disability.
I have received
training specific to
FASD.
Yes
29%
No
71%
I feel confident in my ability to work with
a child or adult living with the effects of
prenatal alcohol exposure.
Kentucky
Resources for
You
Agree
33%
Disagree
42%
Not Sure
25%
A person can have brain
dysfunction caused by prenatal
exposure to alcohol without
having any identifying facial
characteristics.
Agree
89%
Disagree
2%
Not Sure
9%
I would be
interested in
receiving training
specific to FASD.
Yes
78%
No
6%
Not Sure
16%
The majority of
service providers
are not currently
trained in FASDspecific issues, but
indicate interest in
receiving this
training.
For FASD Trainings, Resources and Materials:
Kentucky’s Division of Substance Abuse funds a statewide FASD
Prevention Enhancement Site (FASD PES), created to support local
programs and statewide systems in effectively addressing FASD issues.
Contact Laura Nagle, FASD PES Coordinator at Lmnagle@bluegrass.org
For FASD Assessments and Diagnosis:
The University of Louisville’s Weisskopf Child Evaluation Center offers Kentucky’s first FASD
Diagnostic Clinic, directed by Dr. Yasmin Senturias.
For more information, contact the Weisskopf Center at: 502-852-7558