13 April 2015
Understanding children with PMLD in
theory, research and practice
Dr Ben Simmons, Graduate School of Education
(ben.simmons@bristol.ac.uk)
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13 April 2015
What is “PMLD”?
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Profound and multiple learning disabilities (UK)
Extensive congenital neurological impairments
Global developmental delay
IQ below 20 (World Health Organisation, 1992)
Pre-verbal stage of development
Same developmental state as neonate/infant
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13 April 2015
What is “PMLD”?
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‘Pre-x symptomatology’ (Simmons et al., 2008)
Pre-volitional / pre-agentic (reflexive, SIB)
Pre-contingency aware (no cause-effect/goal)
Pre-symbolic (pre-intentional communication)
Pre-intersubjective (no joint attention)
Lack explicit sense of self, other and world
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13 April 2015
What is “PMLD”?
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Sensory impairments
Physical impairments (e.g. cerebral palsy)
Complex medical needs (e.g. epilepsy; tube-fed)
Fragile life expectancies
Personal care needs (e.g. doubly incontinent)
Deemed to require lifetime of support
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13 April 2015
What is “PMLD”?
To summarise:
1. Profound cognitive impairment/delay
2. One or more additional impairments (sensory,
mobility, etc.)
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13 April 2015
Research in (special) education
• Finding ways to push children with PMLD
through the pre-verbal stage of development
• Key focus: interventions to support emerging
awareness of the physical and social
environment
• Key focus: development of communication skills
• Behaviourism and cognitivism
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13 April 2015
Behaviourism
Gregory and Zangwill (1987):
“The central tenet of behaviourism is that
thoughts, feelings, and intentions, mental
processes all, do no determine what we do. Our
behaviour is the product of our conditioning. We
are biological machines and do not consciously act;
rather we react to stimuli” (p. 71)
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13 April 2015
Behaviourism
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Scientific study of observable behaviour
Behaviour = “reflex” to environmental “stimuli”
Causally-closed ontology (cause vs. agency / free will)
Externalism and strict environmentalism (Watson, 1913)
Discover S-R laws, control and predict behaviour
“Internal” phenomena (mind, emotion etc.) not observable and
denied scientific legitimacy
• Change in behaviour from birth = “conditioning”
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13 April 2015
Behaviourism (classical conditioning)
PMLD literature: classical vs. and operant
Classical conditioning theory:
• Learning through association
• One stimulus comes to elicit the same response as another
stimulus
• Pavlov: dogs salivate at food (unconditioned response); and
eventually in presence of the person who fed the dogs
(conditioned response).
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13 April 2015
Behaviourism and PMLD research
Classical conditioning and eye-blink response
1. Puff of air into eye (US) to elicit blink (UR)
2. Sound played before puff of air
3. Eventually, sound elicits blink before puff of air
(sound becomes a CS which produces CR)
(Remington, 1996)
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13 April 2015
Behaviourism and PMLD research
• Mixed results overall (S/PMLD sample)
• Remington (1996): Classical conditioning
important to demonstrate some learning.
• Reid et al. (1991): Questions value of research
that does not support functional/adaptive skill
acquisition
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13 April 2015
Behaviourism (operant conditioning)
Operant conditioning theory:
• Skinner: we behave because history of consequences
• Operant: behaviour defined in terms of effect on environment (a
class of behaviour)
• Operant conditioning: operant brought under control of stimulus
through contingent reinforcement
• Reinforcement: if our behaviours have positive consequences, we
are more likely to perform those actions again
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13 April 2015
Behaviourism and PMLD research
• “First wave” (50s-80s) test responsiveness of child to conditioning
• Contingently provide reinforcing stimuli when target behaviour
observed (head turn; smile; vocalisation, etc.)
• Stimuli: food, drink, praise, music, film, lights, toys, etc.
• Improving posture: collar and mercury switch (Grove, 1975)
• Adaptive skills: leisure skills (e.g. amount of time spent
interacting with toys through microswitch)
• Mixed results (short-term studies; some failed to respond)
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13 April 2015
Behaviourism and PMLD research
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13 April 2015
[...] the applied behavioral research has not been successful; the
research has not demonstrated that persons with profound multiple
handicaps can acquire any independent adaptive skills (Reid et al.,
1991, pp. 329-330).
[...] because operant-orientated behavioral programs currently
represent the predominant treatment approach for attempting to
teach skills to persons with very serious developmental disabilities,
if these programs are not effective then questions must arise as to
what should constitute appropriate treatment for these individuals
(Reid et al., 1991, p. 320).
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13 April 2015
Behaviourism and PMLD research
• “Second wave”
• Preferred stimuli assessment (successive choice procedure)
• Choosing alternative responses to condition: microswitch
pressing and contingency awareness
• “Internal variables”: behaviour states / alertness; happiness
• The relation between microswitch behaviour and behaviour
states / alertness / happiness
• Stereotyped behaviours (SIB)
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13 April 2015
Behaviourism and PMLD research
• Mixed to positive results in systematic reviews
BUT…
• No differentiation between SLD and PMLD
• No differentiation between children and adults
• We have to be tentative
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13 April 2015
Cognitivism
• Cognitive psychology: studies complex mental process
that guide action
• Explore how the mind works in terms of symbolic
representations of the world / internal representations
of external world
• Cognitive development: how cognitive structures
transform over time, leading to new levels of awareness
and responsiveness
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13 April 2015
Cognitive-developmental approach
PMLD literature concerned with developing sociability
(social awareness and communication skills)
Commonly cited academics in “primary” PMLD literature:
• Schaffer (1971);
• Trevarthen & Aitken (2001);
• Bates et al. (1975)
• (etc.)
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13 April 2015
Cognitive-developmental approach
Schaffer (1971):
• Newborn “a social being” (p. 13); not differentiate self from other; inner from
outer; self-produced from other produced.
• 1 year: infants “joined human race” (ibid) and communicate symbolically
• Emergence of sociability: perceptual interactions not motor competencies;
visual registration of things in environment; exposure learning
• Gradual recognition of people (mum at 4 months): implies infants retain
information, match sensory input of mum with stored image of mum and
appreciate it’s the same person
• Acquisition of representations at neuronal level through repeated encounters,
enabling infant to recognise “social objects” / “imprinting”
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13 April 2015
Cognitive-developmental approach
Trevarthen and Aitken (2001):
[…] newborn infants, with their very immature though elaborate
brains, limited cognitions, and weak bodies, are specifically
motivated […] to communicate intricately with the expressive forms
and rhythms of interest and feeling displayed by other humans. This
evidence of purposeful intersubjectivity, or an initial psychosocial
state, must be fundamental for our understanding of human mental
development (p. 3).
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13 April 2015
Cognitive-developmental approach
Trevarthen and Aitken (2001):
• Subjectivity (rudimentary displays of intent)
• Primary intersubjectivity (innate)
• Secondary intersubjectivity (emergent at 9
months; joint attention – PPO)
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13 April 2015
Primary intersubjectivity through
protoconversation (Trevarthen and
Aitken 2001, p.11)
Joint regard (personperson-object awareness)
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13 April 2015
Cognitive-developmental approach
Bates, Camaioni, and Volterra (1975):
• Development of symbolic communication
• Pre-intentional communication (expressive)
• Proto-imperative behaviours (“reach for real” becomes “reach for
signal”)
• Proto-declarative behaviours (pointing to share experience of
object with another subject)
• Earliest form of meaningful communication
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13 April 2015
Cognitive-developmental approach in practice
3 different perspectives:
• Infants are born “asocial” and develop social awareness through visual
learning (Schaffer, 1971)
• Infants are born intersubjective, which is enacted or brought forth through
proto-conversations (Trevarthen and Aitken, 2001)
• Infants do not communicate with intent until they master symbolic forms of
communication (Bates et al., 1975)
• PMLD literature biased towards the view that infants are born asocial, and
develop communicative intent a year after birth. Interventions aim are
addressing lack of communicative competencies of children with PMLD
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13 April 2015
Cognitive-developmental approach in practice
Intensive Interaction (Nind and Hewett, 2001):
• Parent-infant interaction: “implicit pedagogy”
• Infants develop social awareness through social
interaction with parents; need to replicate
parent-infant interaction
• Aim: support emerging symbolic communication
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13 April 2015
Cognitive-developmental approach in practice
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Turn-taking
Imitation
Contingent responding
Eye contact
Repetition
Exaggerated expression (face/voice)
Rhythmical exchange
Mutual pleasure
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13 April 2015
Cognitive-developmental approach in practice
Ware (2003): Responsive environments
• Classroom contexts that provide responses to
the actions of people with PMLD
• “There are two ways in which people receive
responses to their actions: from other people,
and from seeing things happen as a result of
what they do” (p. 1).
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13 April 2015
Summary of psychological theory
• Behaviourism: reflex response caused by stimuli
• Cognitivism: intelligent action requires that
children with PMLD able to represent and
understand the world
• Phenomenology…
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Phenomenology
• Philosophy which tries to describe the structure
of lived experience
• Life-world in narrow sense
• Life-world in broad sense
• Merleau-Ponty: life-world (being-in-the-world)
through our embodiment
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13 April 2015
Phenomenology
Concepts central to Merleau-Ponty’s account of
the pre-objective body:
• The experience of the body
• Body image vs. body schema
• Best grip/proprioception
• The body is existentially posed
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13 April 2015
Phenomenology
Examples of Merleau-Ponty’s pre-objective body at
work:
• Limb substitution as an expression of preobjective being-in-the-world
• Phantom limbs: the body-at-this-moment and
the habit-body
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13 April 2015
Phenomenology
Summary:
• We experience the world through our bodies
• In doing so, we experience our bodies in the world
• This experience is non-conceptual or immediately meaningful
• We experience the world in terms of how we can interact with it
• How do different opportunities to interact with the world lead to
alternative senses of self and others?
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13 April 2015
Comparison
• Behaviourism: actions caused by external stimuli
• Cognitivism: mental representations guide action
• Phenomenology: the world is understood
through the body in terms of affordances
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13 April 2015
The inclusion of children with PMLD
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PhD work (University of Exeter, 2010)
Drawing on previous work with Scope
Case study participant, Sam, 9 years old PMLD
4 days special care unit; 1 day mainstream class
Research: Understanding social engagement and how impact on
growth and learning
• Vignette-writing: rich prosaic renderings of primarily fieldwork
observations; written “live and in the moment”; description of
action in context; rich textual catalogue of data across contexts
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The inclusion of children with PMLD
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“Sam is in his stander and is wheeled to the centre of the classroom where other children are
“standing”. The children form a circle with the teacher in the middle. Sam is looking bored. He licks
his bottom lip, rolls his eyes back and shows the whites of his eyes. He shakes his head left and right
repeatedly. He stops, curls up his top lip and exposes his teeth, frowns and vocalises unhappy sounds
(“....uuuurgh!”) […]. Switches are placed in front of the children. When the switches are pressed they
play the recorded message: “Good morning, everyone!”
Sam becomes impatient - he flaps his arms like a bird, slaps the side of his face, pinches his neck, and
pulls his hair. He pushes his switch off the table and it crashes to the floor. Over time his behaviours
result in injury - red marks appear on his face and neck where he is hitting and pinching himself. An
LSA restrains Sam by holding his arms – he fights to free himself.
It is Sam’s turn to say “good morning” to the class by pressing his switch. The LSA gently moves both
of Sam’s hands over the switch and presses down. The message is played and the teacher
enthusiastically wishes Sam: “Good morning!” She makes eye contact, smiles then nods and praises
Sam. The LSA lets go of Sam’s hands and encourages Sam to hit the switch by himself. Sam pauses.
The adults wait in anticipation. Several seconds go by. Sam suddenly pushes the switch off the table
and slaps himself in the face”.
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13 April 2015
Brief reflection
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What is happening in this vignette?
What is Sam doing and why?
How is he responding to the situation?
Is he communicating anything?
Are his behaviours meaningful?
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13 April 2015
“Sam is sat on the carpet […]. He is in the middle of a group of approximately
twenty children. All the children are close to one another and chatting. Sam
groans and extends his arms and legs in front of him. He then leans back into a
group of chatting girls. He giggles and lets them support his weight. The girls
giggle and do not move […]. The teacher calls Sam’s name whilst taking register.
[…]. One of Sam’s neighbours stands up, walks over to a yellow box […] pulls out
his switch and returns to the carpet. She tells Sam to press his “blue button” and
smiles. Sam leans forward. The girl takes Sam’s hand and places it on top of the
switch. The switch is activated and emits a pre-recorded: “Good morning!”. Sam
repeatedly hits the switch with both hands (he raises his hands, then suddenly
slaps the switch held in front of him, lets his hands fall on his lap, and repeats
several times). […] Between each switch-press Sam flaps his arms like a bird whilst
smiling and vocalises (“Ooooooh!!!”). He wiggles his legs [and] slaps his head
with both hands and makes happy sounds”.
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13 April 2015
Brief Reflection
• What is the difference between this vignette (Sam in his
mainstream school) and the first vignette (Sam in his
special school)?
• A similar activity is occurring (Sam is being encouraged
to press his switch in order to say “Good morning” to
the class)
• What is different ,and why?
• Are Sam’s actions meaningful?
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One stimulus =
one response
One stimulus =
many responses
Many stimuli =
one response
13 April 2015
Pre-intentional communication (expressive behaviour without intent to
convey meaning, e.g. crying, laughter)
Intentional communication (symbolic behaviours):
1. Proto-imperative behaviours (“reach for real” becomes “reach for
signal”)
2. Proto-declarative behaviours (pointing to share experience of object
with subject)
Earliest form of meaningful communication. Without a capacity for
such person-person-object engagement, the subject cannot be
considered an intentional communicator (and lacks intersubjectivity)
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• Disruptive Sam – cannot contain within existing PMLD /
psychological frameworks – bursts out of them and
refuses to be psychologically categorised in a
meaningful way
• Sam cannot “speak” through these academic domains,
they deny him voice:
• Behaviourism = Sam is not an agent - he is a reflexive
organism ; behaviour is merely caused and thus
stripped of meaning and volition
• Cognitivism = Sam is pre-communicative – his lack of
proto-imperative / proto-declarative behaviours means
that he cannot communicate to anyone with intent
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What about phenomenology?
• It helps us theorise why Sam’s behaved in different contexts
• Different educational contexts were practically signified in
different ways;
• For Sam, the social milieu in his mainstream school presented as
a behavioural setting, which signified objects as that through
which social engagement took place. The adults and peers in
Sam’s special school context did not present in this way.
• Intercorporeality; being with peers vs. strapped in chairs
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13 April 2015
Concluding thoughts
• PMLD children present in complex ways
• Existing approaches too simple; reductionist
• Understanding lived experiences/dimensions of personhood
requires alternative approaches that allow us to glean insights
• Academia vs. intimacy – imposition of interpretive systems and
encountering children in these different sets of circumstances,
breaking free from boundaries and resisting psychological theory
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