http://www.fascets.org/conceptualfoundation.html
FASCETS Conceptual Foundation: A Neurobehavioral Construct for Interventions
For Children and Adults with Fetal Alcohol Spectrum Disorders (FASD)
Fetal Alcohol Syndrome (FAS) has been referred to as the leading cause
of mental retardation and developmental disabilities in the Western
world for over fifteen years, a significant statement since
underidentification of this population is still common. National and
state studies have found that the numbers of women who drink during
pregnancy continue to be high (CDC, 1997, Governor’s Task Force, MN,
1998, Oregon Benchmarks, 1998; the National Survey on Drug Use and
Health found that although overall rates of use appear to be dropping,
girls start using alcohol/drugs at higher rates than boys, 2006.)
The medical diagnostic criteria for FAS were established in 1973. Since
then, thousands of research studies have explored the mechanisms of
damage to fetuses caused by alcohol and other drugs. Increasingly
sophisticated studies have clarified the nature and duration of these
effects. It appears that of the drugs studied to date, e.g., cocaine
and methamphetamine, prenatal exposure to alcohol causes the greatest
damage to the developing brain and central nervous system.
People with Fetal Alcohol Syndrome, and particularly those with Fetal
Alcohol Spectrum Disorders (FASD), are referred to as having an
“invisible physical handicapping condition,” since there are few
external physical characteristics of prenatal alcohol exposure. In
these cases, the only symptoms of the underlying neurological
disability are behaviors.
Although underdiagnosis of FASD is common, people with FASD are often
assigned multiple DSM IV diagnoses, including Attention Deficit
Disorder, Hyperactivity, Asperger’s Disorder, Learning Disorder,
Reactive Attachment Disorder, Conduct Disorder, Emotionally Disturbed,
Oppositional Defiant Disorder, and others.
Diagnoses on Axis I in the DSM IV organize constellations of
presenting behaviors. Many capture primary neurobehavioral and
secondary defensive behavioral symptoms of FASD. However, interventions
generated on the basis of Axis I diagnoses address behavioral symptoms.
The etiology of behaviors -- effects of brain dysfunction on behaviors
-- is typically not recognized or incorporated into techniques. For
example, recent research has found some medicinal and behavioral
interventions for Attention Deficit Disorder (ADD) to be ineffective
when applied to those with FASD/ ADD, since underlying neurocognitive
characteristics of FASD and ADD appear to be significantly different
(Coles, 1997).
Linking research findings with behaviors: A gap exists between the
research on FASD, brain research, and behavioral literature.
Historically, the idea of brain dysfunction, or the “organicity”
concept, failed to gain general acceptance. This has been attributed in
part to the complexity, subtlety and variability of effects and the
overlap between neuro- and psycho-pathology. There is a vast body of
medical literature on the physical characteristics of brain
dysfunction, and an equally huge body of literature on behaviors. These
two spheres have yet to merge.
Bridging this gap and linking the idea of brain dysfunction
with behaviors creates an alternative explanatory theoretical framework
that shifts thinking from learning theory into a neurobehavioral
paradigm for understanding the meaning of behaviors. This paradigm
redefines the meaning of behaviors and supports development of a more
holistic and integrated method for systematically considering all
facets of the person – physical, developmental, and cognitive. Linking
brain dysfunction with behaviors is consistent with research on FASD.
The resulting neurobehavioral construct is informed by research on FASD
and is the basis for the FASCETS model. This model was developed on the
basis of clinical work and research findings. It provides an organized
approach for rethinking the meaning of behaviors, and generating
specific, relevant techniques. This structure manages the complexity
and diversity of neurobehavioral characteristics.
The challenge in creating this model has been to accurately
translate research findings into practical information and training
material that is intellectually accessible for a wide range of
educational levels, and that has relevance for all disciplines.
The logic of interventions based on this model reads as follows: If
children, adolescents and adults with FASD have by definition a
physical disability – brain damage from prenatal exposure to
alcohol/drugs -- and if the primary presenting symptoms of this
disability are learning and other behavioral characteristics, then it
follows that they would benefit from appropriate environmental
accommodations. This is the same principle that is applied for people
with more obvious physical handicapping conditions.
Presenting behavioral characteristics of people with observable
physical challenges, e.g., paralysis, are different from behavioral
characteristics associated with people with brain dysfunction, e.g.,
behavioral symptoms of sensory overload, memory problems, or
dysmaturity. The obviousness of this statement is intentional:
Behaviors that reflect underlying neuropathology are rarely framed in a
neurological perspective and are instead viewed through a moral lens
and seen as a function of volition, or psychopathology.
Although presenting behaviors indicating the presence of other physical
disabilities are different, the principles for interventions for both
kinds of physically-based conditions are the same. As self-evident as
this seems, the application of this principle represents a nearly
paradoxical way of thinking, understanding, and defining points of
intervention.
People with physical challenges are provided with environmental
accommodations, the range of which reflects the variability of
disabling conditions. The more obvious the disability, the clearer the
nature of the accommodations, e.g., where there is paralysis,
wheelchairs and ramps are provided. When presenting symptoms of a
disability are behavioral, identification of accommodations is more
elusive, e.g., modifying timelines, providing alternative instructional
strategies, or recognizing developmental rather than chronological age.
However, just as outcomes are improved for others with recognized
disabilities whose needs have been addressed, preliminary clinical
findings of improved outcomes for children, families and professionals
based on this approach suggest the efficacy of this model for those
with FASD.
A question of fit: FASD as a social problem is emerging in a
world still dominated by learning theory and a behavioral paradigm.
This paradigm, with associated assumptions about brain function and
behaviors, forms the basis for understanding and intervening in
behavioral symptoms. These assumptions remain unexplored for their
relevance for people with neurobehavioral disorders. FASD challenges
the theory to expand to include the neurobehavioral dimension, since
interventions based on the principles of learning theory are often
incompatible with the needs and abilities of people with FASD.
The poor fit between behavioral techniques and FASD may be
indicated by findings from the Secondary Disabilities study published
by Dr. Streissguth (1996). For example, this study found mental health
problems to be the most common secondary disability associated with
FASD. Secondary disabilities are defined as defensive behavioral
characteristics and are not intrinsic to FASD. These are challenging
behaviors that develop over time as a function of a chronic poor fit
between the person and his or her environment.
The most important finding of Dr. Streissguth’s study may be implicit.
Following diagnosis for FAS and FAE, subjects continued to receive
standard interventions, e.g., mental health and school services, and
traditional parenting techniques. Most of these are
cognitive-behavioral interventions based on learning theory and are
variations on a theme of one: Identify problem behaviors and target
these for change.
The research findings of high frequencies of secondary problems
occurred in spite of these interventions. Rather than suggest the
inevitability of deterioration and associated secondary challenging
behavioral characteristics, these findings appear to indicate the
ineffectiveness of otherwise good traditional, learning-theory based
techniques.
Interventions that focus on changing presenting behaviors that are
symptoms of a disability seem to yield frustration and behavioral
deterioration. The net effect is like inadvertently “beating the blind
child who refuses to read the blackboard.” Paradoxically, when
behaviors are understood differently as cues, or symptoms, of an
underlying disability and environments are adapted to provide a good
fit with the needs and strengths of the individual, many challenging
behaviors resolve. Including the key variable of brain dysfunction and
understanding behaviors from a neurobehavioral perspective provides a
way to shift from seeing the child as being the problem, to
understanding the child as having a problem, a physical disability.
The apparent limits of the learning theory paradigm may contribute to
the paucity of interventive research on FASD. There has long been
speculation that few interventive studies on FASD exist. This was
confirmed by researchers in Canada who searched the literature on FASD
and published a State of the Evidence Review (Premji, 2004). Of 16,913
references, only seven interventive studies were located. One was the
three-year FASD interventive study conducted by FASCETS and funded by
the State of Oregon that tested this neurobehavioral approach for
working with children and adolescents with FASD. The project was an
educational, community-based, multisystem collaboration. The goal was
to increase understanding of behaviors from a neurobehavioral
perspective, and generate congruent accommodations across domains that
create a good fit for children with FASD in all environments. The
hypothesis was that behavioral improvements would be a function of
adults understanding children differently and providing accommodations
in all settings. Statistically significant findings of reduced
secondary behavioral characteristics in children and improvements in
parents and professionals suggest the potential viability of this
construct (Malbin 2002).
Innovativeness: The definition of a problem determines the
intervention, or, beliefs dictate interventions (Holloway, in lecture,
1989). If a behavior is viewed as a function of willfulness, or choice,
interventions typically focus on changing the behavior. If a behavior
is recognized as having a neurological basis, then the target for
intervention includes the environment. Recognizing brain dysfunction as
the etiology for behaviors redefines perceptions, which then redefines
the nature of the problem and clearly redefines the nature of
interventions.
The shift in focus is from the child to the child-in-the-environment,
from trying harder using increasingly controlling and coercive
measures, to trying differently and paradoxically achieving reductions
in secondary behaviors through environmental accommodations. This is
like writing the IEP for the environment.
The simple idea of reframing perceptions to see behaviors as
symptoms, rather than as the thing to be changed, is new. The
simplicity of the statement belies the intellectual shift this entails.
Preliminary findings from the three-year study mentioned above that
explored the soundness of this hypothesis clearly suggest that as
caregivers and professionals understand behaviors differently, their
perceptions change, options expand, and secondary symptoms in children
are reduced.
The innovativeness of this model is found in its redefinition of
problems and solutions in a manner consistent with research findings.
The study based on this model tested an approach rather than a
technique. Statistically significant findings of improvements suggest
the importance of further research on this approach.
Implementation: Accommodations in all environments are provided for
people with other physical disorders. Accordingly, accommodations in
all systems of care are also necessary for people with FASD. An
educated community-based multidisciplinary continuum of care
facilitates sustained implementation of accommodations.
The process of implementation is enhanced by recognizing personal,
historical, cultural, intellectual, institutional, and fiscal issues
and associated with this issue. The complexity of these dynamics
suggests the importance of a comprehensive and thoughtful approach, a
reasonable timeline, and adequate support for achieving sustained
multisystems implementation. Support for implementation required by
this approach is decremental, meaning there is less need for external
supports over time. This is an empowerment model in the best sense of
the term, proactive rather than reactive. It supports youth and adults
with FASD, parents, professionals and their systems.
Conclusion: The goals of this approach are to increase understanding of
FASD as a primary brain-based physical disability with behavioral
symptoms, to increase effectiveness and efficiency of practice and
program design, and to contribute to the long range goals of community
healing and prevention of FASD.
http://www.fascets.org/conceptualfoundation.html
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