Understanding children with PMLD in theory, research and practiceDr Ben Simmons, Graduate School of Education (ben.simmons@bristol.ac.uk)

18 April 2023

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What is “PMLD”?

• 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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What is “PMLD”?

• ‘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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What is “PMLD”?

• 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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What is “PMLD”?

To summarise:1.Profound cognitive impairment/delay2.One or more additional impairments (sensory, mobility, etc.)

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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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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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Behaviourism• 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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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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Behaviourism and PMLD research

Classical conditioning and eye-blink response1.Puff of air into eye (US) to elicit blink (UR)2.Sound played before puff of air3.Eventually, sound elicits blink before puff of air (sound becomes a CS which produces CR)(Remington, 1996)

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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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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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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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Behaviourism and PMLD research

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[...] 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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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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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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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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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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Cognitive-developmental approachSchaffer (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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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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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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Primary intersubjectivity through protoconversation (Trevarthen and Aitken 2001, p.11)

Joint regard (person-person-object awareness)

Cognitive-developmental approachBates, 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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Cognitive-developmental approach in practice3 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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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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Cognitive-developmental approach in practice• Turn-taking• Imitation• Contingent responding• Eye contact• Repetition• Exaggerated expression (face/voice)• Rhythmical exchange• Mutual pleasure

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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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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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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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Phenomenology

Examples of Merleau-Ponty’s pre-objective body at work:•Limb substitution as an expression of pre-objective being-in-the-world•Phantom limbs: the body-at-this-moment and the habit-body

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PhenomenologySummary:•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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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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The inclusion of children with PMLD• 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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Brief reflection

• 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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“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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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

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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

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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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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