Elements of Success: Helping Individuals with
FASD
and Co-occurring Disorders
Dumas
Bay Retreat Center – FAS*FRI Conference
September
25, 2007
Cognition and Behavior Notes
from Presentation by Ann Streissguth. Ph.D “The
brain is the most vulnerable organ affected by prenatal alcohol exposure.” Riley
and Driscoll’s study in 1990 showed that the behaviors that we see in children
with a history of prenatal exposure to alcohol are the same as those seen in
animals exposed to prenatal alcohol, so we know these effects are caused by
alcohol independent of environmental factors.
There are reports that show evidence of alcohol effects in monkeys and
fruit flies. Someone stated that a
study with spiders exposed to different substances, where alcohol had the most
adverse effects of all. “FASDs
are birth defects of the brain.” We
set up diagnostic clinics, but we are getting the children too late, they are
missing out on the early intervention services that can make a big difference in
outcome later. Countries like
Sweden that have health care for all do not have a big problem with FASD because
it is dealt with in prenatal care. In
the U.S. we have more problems with FASD and we have a very high death rate for
babies. Testing:
WISC, WAIS, WRAT may not show the severity of deficits in FASD.
When doing the VABS on individuals with FASD, the score is 2 standard
deviations below the person’s own IQ, and even more so when compared to
general population. IE, IQ of
person with FAS might be 80, and the Vineland score would be 60. The
Fetal Alcohol Behavior Scales (FABS) designed by Streissguth is based on
behaviors observed in those with a diagnosis. Behavioral
Phenotypes: ·
Poor
Habituation (difficulty modulating incoming stimuli) 1.
Becomes
over stimulated in social situations 2.
Over-reacts
to situations with strong emotional response 3.
Has mood
swings set off by small things 4.
Has poor
attention span 5.
Has
trouble completing tasks ·
Poor
cause and effect reasoning in social situations 1.
Unaware
of consequences of own behavior 2.
Poor
judgment about whom to trust 3.
Interrupts
with poor timing 4.
Cannot
take a hint 5.
Wants to
be the center of attention In
persons who have a diagnosis of an FASD but have a normal IQ, scores are below
normal in certain attention tests: COWAT (shifting sets), RUFF (perseveration),
CVLT (free recall intrusions, adds to stories). In some attention tests, they do well while there are no
distractions, but when distractions were added, they scored 1-2 standard
deviations below normal. FASD
does not fit the MR model, but it fits better with the model for Traumatic Brain
Injury. In
persons with FASD, problems with Executive Functions are much worse than those
with similar IQ. Clinical
Implications for Adolescents and Adults with FASD Difficulties
they have
What this means for them: Poor
judgment
Easily victimized (and then becomes victimizer) Attention
deficits
Easily distracted Poor
math skills
Cannot manage money Memory
deficits
Difficulty learning from experience Difficulty
abstracting
Cannot figure out the consequences Disoriented
in time and space
Misses
social cues Frustration
tolerance Quick to become angry Longitudinal
Study of Individuals with Prenatal Exposure to Alcohol: Infancy
outcomes show poor suck, latency in beginning to such (delayed response to
nipple), poor reflexes. Leading
indicator is poor habituation to light, which is related to later learning
disorders. Bayley
scales on babies at 18 months did not detect effects. This is NOT the time to test. At
4 years of age, we can detect difficulties in areas of attention, arithmetic,
processing time, latency to correct errors, poor balance, perseverance, verbal
interruptions, hypertonic (some can be hypotonic). From
age 4 to 14, behavioral differences are seen in laboratory (blind tests) in
these areas: distractible, uncooperative, rigid, seeks reassurance,
disorganized, impulsive (14). Teacher
rating shows problems with cooperation, impulsivity, memory, attention,
unpredictable behavior. The same
results were observed at 21 years of age. We have failed in identification of FASD in time for early intervention to prevent secondary disabilities. We have failed in getting relevant help when they are in the institutions and facilities when they are most vulnerable (schools, mental health, criminal justice system). And we have failed to provide adequate services and supports for the families caring for then. Recommendations: Funding
for Public Health Model to initiate Neonatal Health Study to look at the corpus
callosum of newborn through fontanel ultrasound ($150, nonintrusive, mother can
observe and be informed immediately to access early intervention services).
Pilot study shows ability to accurately detect FASD in half of newborns
prenatally exposed to alcohol. States
need to initiate the following: ·
Residential
program and transitional resources for affected individuals ·
Training
in Behavioral Health System ·
Screening
programs to identify FASD in persons getting mental health services and measure
outcomes ·
Screen
newborns with fontanel ultrasound (described above) ·
Provide
services and supports to families caring for children and adults with FASD
FASD in the Adolescent Developmental Process Notes
from Presentation by Dr. Charles Huffine Dumas
Bay Conference Center – FAS*FRI September
25, 2007 Behavior
is the language of adolescence, the primary medium. Parents
job is sometimes to put the breaks on what they do.
Adolescents need an arena of safety and supervision in which to explore.
When they don’t have this, things can go wrong (poverty, obesity,
disability, etc.)
Overprotection and underprotection can both have potential to be
damaging. FASD
is a cause of distress in adolescence.
There is a large variability among youth with FASD. FASD
in teens: what should parents do? ·
Good assessment of strengths and needs ·
For those whose children have severe intellectual and medical
disabilities: ·
Find or create resources where the child can maximize the adolescent
process ·
Help child accept their realities and work around them, recovery process ·
Demand resources from schools, medical care, mental health, eventually
developmental disabilities. Youth
with more subtle disabilities: ·
Be aware of your child’s capacity to exercise judgment, for social
learning. ·
Exercise higher degree of caution based on assessment of capabilities. ·
Flexible approach: accept that growth can occur, negotiate and reassess
continuously. ·
Youth with FASD make mistakes, but it’s not always the end of the
world. (You
can celebrate that they are out there being kids.) We
may over assess the risk of alcohol use and drug use among teens.
Marijuana is far less dangerous for youth. Reactivity
vs wisdom in dealing with emerging sexuality. Face
fear of juvenile justice system, discipline, neighbors’ judgment. What
teens with FASD should do: ·
Push as hard as you can to have freedom to take usual teen risks (if they
don’t, they are probably depressed). ·
Try to figure out the “rules” in social groups and ways infractions
are punished by teen sanctions ·
Find adult mentors with whom to figure out confusing social dilemmas
(older adults mentor younger kids, like the crazy aunt that the kids love) ·
Come to understand one’s “wiring” presents risks for impulsivity,
judgment, and being slow to learn ·
Maximize assets: i.e. charm, desire to please, being cute or strong,
talents Things
that teens with FASD should do but are often reluctant: ·
Accept help at school from tutors, resource rooms, special ed ·
Using trained mental health professional as an adult mentor ·
Negotiate with parents based on common understanding of the problems ·
Learn from constructive peer feedback ·
Accept, normalize, learn about FASD Neuropsychological Issues in Fetal Alcohol Syndrome
Notes
from Presentation by Gayle Fay, Ph.D.
Dumas
Bay Conference Center – FAS*FRI September
25, 2007 Neuropsychological
Issue: Arousal
Two
kinds of arousal are generated by the mind’s reaction to the environment: ·
Energy to focus and concentrate ·
Energy to fight, flee, or freeze (reaction to stress) The
latter has the capacity to obstruct the former.
Children with FASD are often under great stress. When
a child or adolescent is overloaded with arousal, they cannot actively pursue
choice. When
the circuits are overloaded, their ability to make sensible decisions is
virtually nonexistent.
They will become increasing impulsive, disorganized, and inappropriate. Neuropsychological
Issue: Attention/Concentration
·
Crucial for nearly all cognitive abilities ·
Defined as “online maintenance of convergent information coming from
different modalities: ·
This is managed on the neurological level of the brain and very difficult
for a person with brain injury. ·
Attention is not a single or isolated cognitive function ·
Selective/focused attention requires the ability to: o
Resist distraction o
Sort though information o
Identify the relevant elements of the task ·
Sustained attention: ability to keep one’s mind on the job o
Attention switching (dual attention) o
This is not obsessive behavior, but is rigid behavior. o
They can manage to keep their attention for about 4 to 6 minutes. Neuropsychological
Issue: Thinking and Problem Solving in the Real World
·
Poor abstract thinking (reasoning) ·
Know-do dissociation (“He knows what to do because he told me exactly
what he was supposed to do.”)
Coach them through the exact performance of the endeavor. ·
Inability to transfer, generalize information (generalizations have to be
absolutely and specifically taught) ·
Poor judgment and decision making Safety
has to be a critical goal on the IEP for students at all ages. Neuropsychological
Issue: Speed of Thinking and Synchronization ·
Lengthy latency to response ·
Slowed uptake and assimilation of information (teacher is on D,E,F and
student is still working out A,B,C; television show, may lag processing what
they are watching) ·
Unduly rapid uptake and assimilation of information; unduly rapid output
of information (non-reflective response style) (inappropriate behavior and
out-of-context information) Neuropsychological
Issue: Self Regulation ·
Biological: Inability to regulate arousal (neurofeedback helps them learn
to modulate arousal, at least gives them an idea of what a stable arousal state
feels like) ·
Neuropsychological Issue: Self Regulation – Behavioral ·
Impaired monitoring of behavior (reality testing)
·
Excessively bound by environment cues (cannot think beyond the situation,
therefore easily manipulated) ·
Distorted internal models of past, present, and future environments
(cannot draw on prior experience) They
can be coached by specific, nonjudgmental cues to respond appropriately. Neuropsychological
Issue: Speech Language Skills ·
Impaired auditory processing ·
Issues with retrieval and elaboration o
Use fewer words o
Use phrases instead of sentences o
Reduced content Neuropsychological
Issue: Memory ·
Inextricably intertwined with arousal, attention, cognition, and emotion ·
Systems: episodic, visual, verbal, procedural (memory for rules and
algorithms) Neuropsychological
Issue: Working Memory ·
Manipulation of online information ·
Relate information to experiential base ·
Ability to reorganize mental context Neuropsychological
Issue: Thinking Flexibly ·
Cannot shift focus between external events or between external events and
internal representation ·
Results in perseveration (repetitive responses) (hyper-arousal from
stress = stuck) Behaviors
we see are neurological, not psychological
Neuropsychological
Issue: Physical/Mental Endurance ·
High levels of arousal, challenge, and anxiety sap physical and mental
endurance ·
Many FAS children show heightened levels of hyperactivity when endurance
is low Neuropsychological
Issue: Social Pragmatics/Social Communication Requires
superb executive and information processing skills (recognition of subtle social
cues). Not
impossible, but needs to be embedded into their neurological program from an
early age.
Through the Lens of a Child Psychiatrist Distinguishing
FASD from Other Co-occurring Disorders Notes
from Presentation by Dr. Susan Rich (MD, MPH) Dumas
Bay Conference Center – FAS*FRI September
25, 2007 Dr
Rich is an MD and also MPH, board certified psychiatrist in Washington DC and
describes herself as an impassioned person on a journey who offers her resources
in the area of health policy on a national basis. Link between ADHD and FASD ·
Clinical subtype of FASD
may exist within the population of individuals with ADHD ·
Nearly every individual
with FASD has some form of attention deficit o
Caution in use of
stimulant medications for individuals with co-morbid heart conditions o
No well-controlled
clinical trials in this population (comparing FASD to garden-variety ADHD) Other Psychiatric Disorders ·
OCD co-occurring with
Tourette’s syndrome may be more common in individuals with FASD ·
Autistic behaviors have
been noted in younger children and school age children prenatally exposed to
alcohol HHS report to Congress, June 2000) ·
There is a subset of
children with diagnosis of Autism who should be considered for FASD Functional Birth Defects: ·
Learning disorders ·
Mental retardation ·
Developmental
disabilities ·
Language difficulties ·
Attention deficits ·
Behavioral disorders One
standard drink per day in pregnancy is linked to attention deficits in the child Public health Issue: Need to prevent the Epidemic caused by our social drug of choice!!! Focus on Preconceptual Health. Common
Behaviors in ARND ·
Agression ·
Impulsivity ·
Hyperactivity ·
Hyper-reactivity ·
Emotional chameleons Common secondary disabilities in children and adolescents with ARND·
Peer pressure (boys
become delinquent, girls have unintended pregnancies) ·
Easily victimized child
abuse, incest, abduction) ·
School failure ·
Trauma and injuries Dr.SDRich@gmail.com
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