INTRODUCTION
A project on “Assessment of Cognition in Relation to Deafblindness” has been
established. As the subtitle “from sensation to dialogue” suggests cognition is
addressed in a broad sense, involving the field of physiology, neuroscience, cognitive
and developmental psychology as well as social psychology, pedagogy and
semiotics. The point of view is practical though, about sharing experiences and
developing competence. It is, no doubt, difficult to assess cognitive abilities in
persons with deafblindness. Expressions are not easy to interpret, especially
regarding congenitally pre- linguistic deafblindness. Our project is mainly focusing
on this subgroup but also on acquired deafblindness and potential cognitive decline.
Psychometric instruments, analytical models and norms are missing to a high degree
in both cases. Our project hence aims to increase the competence among
professionals to understand, observe, describe and assess cognitive abilities in
persons with deafblindness. Increased knowledge about deafblind- specific aspects of
cognition is a prerequisite – in other words knowledge about tactile cognition. We
need to develop methods and guidelines applicable in optimal settings, herby
including knowledge about tactile communication to secure validity.
I would like to introduce some essay´s written by colleagues taking part in the
project, mirroring different important aspects of cognition related to deafblindness establishing a state of the art. There are of cause as many possible descriptions as
participants. The following text is written from my point of view, as coordinator.
This is a work in progress, and documentation is important. We should so to say “be
standing on the shoulders of earlier documentation”, in developing knowledge. This
introduction could be looked at as an extensive guide to the other more delimitated
and detailed contributions, metaphorically characterized by higher density or depth.
It is possible, or even advisable, to let these texts enlighten each other, to regard them
as written remains of an ongoing interdisciplinary dialogue.
To explore cognition implies contributions from different fields. Tension between
knowledge from different levels of human life, as the biological, psychological and
social level, is unavoidable, and tension between different perspectives within a level
as well. It is, not least, that old discussion between Plato and his disciple Aristotle if
mind and matter are separated or not. I would say that we all agree that there in fact
is a body-soul connection, but as man is shaped by nature as well as nurture different
focuses might be chosen when addressing cognition. A pathological focus on
deficiencies and analyses of causes gives us an understanding of hindrance and a hint
of possibilities. That is valuable information for the more salutegene construction of
meaning and search for potential, but could also be contradictory. We nevertheless
have a common base in knowledge about tactile cognition in a structural and
functional sense and about cognitive aspects of co- created communication. It is
decisive for interventions that intentional behaviour, in other words action, is
connected to other factors, weather they are of biological or social origin
As we all know theoretical perspectives have blind spots or at least an excluding
focus. An all inclusive approach would be of no use when forming guidelines, but a
dialogue between representatives for different perspectives could in best case be a
mirroring process. An awareness of blind spots is valuable even if two perspectives,
we might call them “metaphors of mind” (Sternberg, 1990), do not seem to be
compatible. Then we must choose one of them to develop models and methods, but
at the same time be aware of other possibilities as well as hidden barriers and sources
of error. In some other cases there are definite compatibility and methods or
analytical models can hence incorporate two or more metaphors
A fusion between communication theory and developmental psychology seems
possible, even necessary when assessing children and adolescents. Neuro- and
developmental- psychology also goes together. The brain of a child is constantly
progressing, and according to new research the process continues in some aspects
during adult life. Growing old, on the other hand, might involve decline, sometimes
hard to separate from effects of increased loss of hearing and sight. To fusion
neuropsychology and let us say a more social psychological or even a semiotic
perspective might be more of a challenge, but to put neuro- cognitive concepts into
an interactive model is a necessary step in developing trustworthy methods.
Referring to Jude Nicholas, specialist in neuropsychology and contributing with a
neuropsychological essay, tactile cognition must be understood in relation to
communication. The brain- structure gives prerequisites for social action and
communication, processes that in turn shape cognitive abilities.
To refer to Jesper Dammeyer, PhD in psychology, we have to believe in cognition,
though it - in some sense - might be as immaterial as the concept of soul. Cognition
has to be modelled out of observed behavioural changes in a social context.
Modelling implies observation of predetermined factors and typifying. When
observing you are not sharing attention and experiences, but observations might still
be more or less personal - more so if built on earlier shared experiences or
autobiographical information from others in relation to the observed person, as Johan
Granli, psychologist, is suggesting in his essay. Emphatic ability will in addition
always be important to interpret expressions. Gunnar Ekelöf, a famous Swedish poet,
has perhaps given us the most elegant expression of this last approach, freely
translated into “the bottom in you is the bottom also in others”. Scientific knowledge
instead relies on methodological concerns and theoretical anchorage. Studying a
heterogenous group as ours, personal and biographical information is necessary
though. Perhaps a case - study is the only trustworthy research - design. When
studying elderly with acquired deafblindness adapted tests developed for the normal population are applicable to some degree. This is valuable also when trying to
understand cognition in case of congenital deafblindness. As a complement Jude
hence encourages us to study persons with acquired deafblindness. The prerequisites
are shared; a cognitive challenge to handle lack of information and communicative
barriers. The advantage is that information is more available when the condition is
acquired, giving us knowledge about congenital deafblindness in transferred sense.
An assessment should be exact and in some sense clean, in control of independent
factors. We must be sure what we are measuring and that the results are reliable,
traditionally referring to a possibility to repeat assessments with similar results. Good
enough interrater - reliability is of cause worth striving for, in this case - according to
Johan - heavily depending on shared expertise, but it must not make us context blind.
Assessing cognition related to deafblindness is not like measuring lengths and highs.
Parameters are deducted from observed interactions. No cognitive behaviour - lists
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are at hand, but we still must try to describe manifestations of cognition and bear in
mind the possible functions, presumable of a more general kind. An assessment,
irrespective of how clean, is at the same time a clinical evaluation that cannot ignore
complexity. The question is how detailed or broad a description can be without
loosing the sight and how the quality of the analyses can be secured. An answer
might be that theoretical anchorage is of outmost importance.
Jude urges us in his essay to understand tactile cognition for the purpose of
functional assessment and intervention planning. Cognition must, he stresses, be
related to tactile sensation and perception, characterized by both bottom – up and top
– down processing. Tactile working memory is, according to Jude, as good as visual
and auditory working - memory when we are addressing recognition, though it
cannot hold as many chunks. A mapping of the structure and functioning of the
somatosensory area is decisive, damage is affecting performance and can explain
difficulties.
Anne Nafstad is specialist in psychology, writing a PhD about communicative
aspects of congenital deafblindness. She prefers a more holistic concept, bodily
tactile cognition. Most persons with deafblindness, she argues, use multisensory
strategies especially during orientation. Scanning, imaging space and establishing a
sense of “the body in a room” is normally a joint attention relying on bodily
impressions including proprioception and information from the distance senses.
Focused exploration on the other hand is often a more exclusively tactile cognitive
act. As Jude puts it, tactile working memory is more specific on a test - level, which
could be considered a typical explorative situation. From a pure neurological
perspective the same pathways are nevertheless occupied when different strategies or
to some extent even when different cortical areas are used. Jude is in favor of a so
called scene analyses focusing on exploration as an important task for working
memory, in a more or less controlled situation, herby observing high levels of
achievements.
According to Flemming Ask Larsen, semiotician and contributing with an essay,
Working - memory makes inhibitation of reactions, planning and action accordingly
possible. The function is so to speak on line, and becomes visible to us in situations
of shared attention. Deficits are affecting the overall functioning, but as Flemming is
asking himself: What can bring lowering in coping capability? Does the working memory have deficiencies or could it instead be overloaded? Is the dysfunction in
other words cause or basis? A semiotic approach helps us to clarify some of the
conceptualisations underlying action, by using the so called 6 space model memory
deficits could be distinguished from other possible explanations. Hopefully this gives
us a ground for developing working memory – tests or observational guidelines.
Working – memory, is no doubt, possible to observe in the every day life of a
deafblind person.
Higher - order processing of information is also depending on processing speed, by
the effects of deafblindness necessarily reduced. Of even greater importance is
attentive capacity to monitor interactions, linking the past to the presence and
planning for the future. An ability to select focus herby enables us to use our limited
resources judiciously and is a prerequisite also for joint attention
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To keep attention over time is a working memory function. But lack of dialogical
experiences and deprivation might affect development. What seems to be a
biological deficiency can according to Anne also be due to the social situation. It is
clear that deafblindness puts pressure on Working- memory, the cognition is
embodied and the world accessible to a lesser degree, attention hence requires a lot.
Among good functioning congenital deafblind persons it takes a lot of capacity, in
Annes word, “to make sense”.
Perhaps we had better to decide if performance or potential is evaluated.
Performance, often the ground for classification and diagnosis, might be deviant for
different reasons. The other concept, potential, is in a goal - oriented pedagogical
setting desirable to find out, perhaps synonymous to performance during optimal
conditions. Through adjustments over time and ongoing observations the potential
can be evaluated. Potential has an obvious Vygotskian touch, including the partner
and focusing on mediation of cognitive tools - an interphenomenon rather then an
intraphenomenon as Johan defines it. Also from a Piagetian perspective one can
relate to the concept. An individual has an inborn capacity and one can make a
prognosis about the development of the ability of abstract thinking, but the real
potential is also due to the experiences. The functional cognitive capacity is
depending on biological given prerequisites as well as the richness of experiences.
Intellectual capacity might very well be innate and the ability to think abstract
constantly progressing according to this prerequisite, but cognition also differs as a
result of interaction with the environment, and as we know persons with congenital
deafblindness are vulnerable in this aspect.
The cognitive functioning might look different, one of Flemming´s core stones, and
there is an obvious risk that the behavior of children with congenital deafblindness
are miss – interpreted, as Dorrit Rosencrantz - specialist in clinical psychology writes in her essay, with an over- diagnosing of mental retardation as a consequence.
It makes all the difference if potential retardation is regarded as a primary diagnose
or a secondary - as a consequence of sensory and/or social deprivation. Neurological
and neuropsychological methods should according to Dorrit be complemented by a
developmental perspective to avoid miss - interpretations, taking the zone of
proximal development into considerations.
A functional scale should describe this cognitive development in relation to
deafblindness. We need to apply such scales when evaluating differences in
conceptualizations - to find the individual potential, covering aspects of cognition
(hence possible subscales) as recognizing, remembering, planning, expressing
thoughts and reflecting
The self is built by memories. Implicit memories, habits or conditioned responses
might, according to Jude, be established even before birth in contrast to explicit
memory depending on cortical maturation and conscious learning. Analyses of
communicative expressions could give us access to remains of these memories,
helping us evaluating functional level.
Early in the development, no matter if a Piagetian or a Vygotskian perspective is
applied, mind is characterized by sensation and spontaneous reactions. Through
maturation and adequate experiences, a conscious domain is established – a self.
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According to Piaget it is a process of adaptation and accommodation, necessarily –
as Vygotsky would add - mediated by another person. Memories are grasped,
intentions built and awareness is awakening; recognition, object constancy, deferred
imitation, categorization herby made possible.
When we grow old cognitive functions as memory might decline, an explanation
why rehabilitation of elderly with dual visual and hearing disabilities sometime fails.
It could of cause also be due to depression or deprivation, and differentiation is of
great importance. Egle Öhman, psychologist, is in her essay describing the
modification of a test of everyday memory for elderly - MIR, to the
deafblindpopulation. One could describe the first tryouts as promising; the test seems
to be indicating different causes of low functioning.
The ability to execute a plan is another important cognitive function, a prime – task
for the human - brain, developed during childhood. Henrik Okbøl, one of the
neuropsychologists in our project, is in an essay pointing out the importance for
independent living. A relatively high proportion of the deaf blind population have,
according to Henrik, problems with making and/or executing plans, especially those
with other disabilities. Henrik is in an essay discussing the nature of this topic,
including the cognitive aspects and problems connected with planning.
The ability to plan can be observed in daily life. It is either a top down or a bottom
up process, in the first case just following a plan, which does not take as much
capability in use as adapting to a new situation. Making plans ad hoc, so to say
bottom up, takes a more developed brain. One could assume an overrepresentation of
executive difficulties in the deafblind – population. Their might be structural
explanations to that, but inadequate performance might have social roots as well. Are
the patterns of interaction really permitting the execution of plans? Is planning on the
whole going on, and if so whose plan are to be executed? As Flemming argues,”
monological mediation buffers dialogical roles of adults”. Supervision of staff is
hence important to be able to evaluate this aspect of cognition
Cognitive ability and working memory is manifested in moment of shared attention;
expressions reveal capacity- social intelligence or theory of mind – but also give us
possibilities to estimate schematic ability and comprehension of reality. The
developmental profile a psychosocial cognitive scale, developed by pedagogue Inger
Rødbroe and earlier mentioned Anne Nafstad, is a functional scale per se. The later
is now developing the core of this model by detailed analyses of shared attention,
describing semantic learning and emergence of referential (symbolic)
communication, implicitly pointing at cognitive potential.
It is however not obvious how to evaluate potential as such. Jette Erlich, consultant
and MSc in education is in her essay describing the process of paraphrasing profile cues into clear questions, to adapt and refine the profile for use as baseline
assessments of cognitive abilities in adults with congenital deafblindness, According
to Jette the everyday knowledge about the person in focus, emanating from shared
experiences, is vital. Staff must hence be part in the evaluation, but as she concludes;
“staff must be educated to be valuable partners”. In his essay Johan in the same spirit
proposes a partner – focus. Cognition is an inter - phenomenon and one is not more
intelligent than the environment permits, which does not disqualify intra -
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phenomenological perspectives. These perspectives are in fact as complementary as
the two sides of a coin. Assessments of cognition is in case of deafblindness very
complex, a phenomenological approach and interdisciplinary conducted assessment
becomes necessary – a dynamic assessment also including the social network is the
best guarantee for valid and reliable results
I like to conclude that a structural and functional picture “in vivo” of the tactile
dominated working memory, would be desirable. Cognitive capacity becomes
observable during situations of shared attention, but the manifestations could look
different. Semiotic analyses of expressions might then support different
physiological and psychological perspectives revealing cognitive aspects. Functional
scales facilitate evaluation. There are some instruments possible to develop and test
out, among them a few memory– tests and the developmental profile, perhaps the
most elaborated functional scale as well. We must find out, though, how to make
cues clear and operational without loosing validity.
Gnesta 090506
Hans Erik Frölander
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