Communication Strategies for Individuals with Profound and Multiple Learning Difficulties (PMLD)

This blog explores techniques and ideas that come from the Positive Behaviour Support Framework which you can read more about here

Individuals with Profound and Multiple Learning Difficulties (PMLD) use non-verbal behaviours such as facial expressions, muscle tension, breathing patterns, body movements and eye gaze to reflect their needs, wants and feelings.

These non-verbal behaviours are involuntary or reflexive responses to the sensations the individual is experiencing internally (e.g. experiencing pain, hunger or thirst) and/or in response to what is happening externally in their environment (e.g. hearing a loud bang, suddenly being moved or touched). The individual is dependent on the communication partner (i.e. parent, teacher, peer) to recognise, interpret and respond to their behaviour. 

Over time, by consistently responding to the individual’s behaviour, the individual may realise that performing a particular behaviour can affect communication partners and their environment. 

Additionally, to help the individual understand what is happening in the environment, they are dependent on the communication partner to use a predictable and consistent approach when interacting with them (Ware, 2016). 

There are a number of factors that can block, distort or interfere with the individual’s ability to participate equally in the two-way communication process as a sender or receiver of a message. 

Some of the factors include: 

Responsiveness factor

As mentioned previously, the individual’s communication behaviours are often subtle, non-conventional and inconsistent. This can often result in the communication partner having difficulty recognising and interpreting the meaning of the behaviour and responding to those behaviours consistently. Consequently, it can lead to the individual feeling that they cannot change or influence the environment.

This can lead to ‘learned helplessness’ (Guess, Benson, & Siegel-Causey, 1985). Learned helplessness results in a progressive reduction or cessation in attempts to engage with objects and people.

In addition, the individual may develop challenging behaviours such as self-injurious behaviours, self-stimulatory behaviours and withdrawal (Carr et al., 1994; & Durand, 1990)

Consistency factor

Consistent patterns of interaction, routines and communication opportunities help the individual feel calm, safe and alert, whereas inconsistency causes the individual to feel anxious, fearful and stressed.

Each communication partner may read the individual’s communication behaviours differently and a lack of consistency in responses from communication partners will make it difficult for the individual to develop an understanding that, when they produce a particular behaviour, a specific result occurs. Thus, consistency is vital..

Stimulation factor

As previously mentioned, the individual’s non-verbal communication behaviours are responses to the sensations they are experiencing internally and/or in response to what is happening externally.

If the external environment is overstimulating (e.g. too bright, too noisy, too many smells, lots of people moving around and touching the individual suddenly) or under-stimulating (e.g. insufficient lighting, too quiet, activity is too boring and hardly anyone is interacting with the individual), the individual may withdraw, shut down or engage in challenging behaviours (e.g. self-stimulatory behaviours, self-injurious behaviours).

This also applies to internal stimulation. For example, if the individual is feeling unwell, experiencing medication side effects or is in pain, they will show similar behaviours. Hence, over-stimulation and under-stimulation negatively impact the individual’s ability to communicate. The individual is dependent on the communication partner to adjust the level of stimulation so that the individual is able to participate.

There is a range of communication strategies that can be used to support individuals with PMLD. They include:

Personal communication dictionary

A personal communication dictionary consists of a combination of photographs, videos and written descriptions of the individual’s communicative behaviours, what they possibly mean and ways others can best respond to them. Interpreting the individual’s behaviours and responding in consistent ways can shape these actions that might initially seem random into purposeful actions. i.e. meaningful, planned and intentional behaviours.

Below is a list of steps to develop the personal communication dictionary:

Step 1 – Collaborate

Collaborate with the key people who know the individual well to identify the non-verbal communicative behaviours the individual exhibits.

Step 2 – Describe 

Describe the behaviours by using a combination of photographs, videos and written descriptions in the ‘what does the individual do’ column. As a team, determine what these behaviours mean. Examples of messages include: 

• Expressing feelings (e.g. hunger, thirst, pain, tired and discomfort)
• Requesting attention/affection/interaction
• Rejecting attention/affection/interaction
• Requesting an object or action
• Rejecting an object or action 

Write down the meaning of the corresponding behaviour in the ‘what it possibly means?’ 

• What does the individual do?
• What it possibly means?
• What you should do?

Step 3 – Review

Review and update the information in the personal communication dictionary regularly.

The other benefit of developing this dictionary is that any changes in behaviour and deterioration in skills can be noted.  The personal communication dictionary becomes an important piece of record that can be used to track any changes in skills.

Speech cues

Speech cues are words that you use to prepare, inform and make comments to the individual about what is happening.

Be face-to-face to let the individual know that you are talking to them.

Call the individual’s name before you are about to present and/ or say something to them (e.g. “Michael, hello”; “Michael, stand up”).

Use animated facial expressions such as big smiles and wide eyes to capture their attention.

Use simple short phrases with keywords rather than long sentences, e.g. “Stand up” vs. “Ok! It’s time for you to stand up”.

Match your words with appropriate (Makaton) signs and/or symbols to help them make the association between what is being done and what is being said.

Repeat the keywords when carrying out the particular activity so that the individual becomes familiar with them. Be consistent with the words that you use, e.g. to indicate that an activity has come to an end, use the same word or phrase, e.g. “finished” rather than using a variety of words like “all done”, “all gone”, “no more”, and “finished”.

Speech cues also include speech features (fine details) that are paired with the spoken message. They affect the way something is said and provide further meaning to the individual.

Some of these additional features include intonation, volume, stress, facial expressions, speed of the spoken message and pausing between spoken messages. Intonation refers to the sound of your voice; for example, try saying “Are you happy now?” in an angry tone, a sad tone and then a happy tone.

The meaning conveyed is different each time even though you’re saying the same words. Saying a keyword slightly louder or more softly can emphasise it; by saying something with extra stress you can highlight the target keyword that you want the individual to learn; by using exaggerated facial expressions you can add meaning to what has been said.

Speed of the spoken message can also provide more information (e.g. singing a song ‘slowly’ vs. ‘fast’). Pausing after saying something allows time for the individual to perceive and process what has been communicated. 

Speech cues should accompany all the other cues. Even if the individual does not hear the spoken word they may receive information from your facial gestures and expressions when you are speaking. Thus, using speech cues consistently will help them understand in order to learn to predict or anticipate what will happen next.

Pairing the speech features with the spoken message will help make the communication partner’s voice sound more interesting to listen to, which will help gain and maintain the individual’s attention.

Object cues

An object cue (also known as a tangible cue or object of reference. Please Note:  an object cue may also be a smell or a sound) is a type of tactile cue that involves using an object to represent POLEs (People, Objects, Locations, Events). They are typically multi-sensory in nature such that when presented to the individual they can see, touch, smell and /or hear the object to inform them that something is about to happen.

By using the same object consistently, you can help the individual learn to associate the object with the POLE. Start by using a few object cues that represent activities that occur frequently or that the individual enjoys by presenting the object before the activity begins. Doing this consistently will help the individual develop anticipation and an understanding of the activity. 

Sometimes it can be difficult to identify or use a whole object that can be used to represent the activity in such situations you may use a: 

• Partial object - e.g. rope to represent swing.
• Associated object - e.g. shopping bag to represent going shopping.
• Arbitrary object - e.g. a piece of wood with an attached length of chain to represent a swing.
• Miniatures - e.g. a doll’s brush may be used to represent grooming. 

Communication partners may use an object or personal item to identify themselves, such as a ring, earrings, beard, watch, item of clothing etc. that the individual can touch or otherwise sense (a particular fragrance/perfume they, and they alone, always wear) as the communication partner verbally announces themselves or interacts with them.

They should select a unique object that is with them at all times to “represent” their name. Consider the greatest sensory impact when deciding what object cues to use as the size, texture and colour of the object, the background and how the object is presented,  may make a difference. 

Sound cues

Sound cues are environmental sounds that are either used as Sensory Cues or Object Cues. The main difference between a Sensory and an Object Cue concerns the timing and location of the POLE. A Sensory Cue indicates where you are while an Object Cue indicates where you are going. A Sensory Cue indicates that an event is about to happen here and now while an Object Cue indicates a POLE that is going to happen elsewhere at a future but fairly immanent time.

Note: the selection of a Sensory Cue must account for the sensory awareness of the individual learners. For example, the use of sound with people who have a significant hearing impairment would seem foolish. However, Sensory Cues may be used together such that an auditory cue may be paired with a visual cue to account for all but the deaf-blind. This is a further distinction between a Sensory Cue and an Object Cue.

A Sensory Cue may be presented alongside other Sensory Cues but an Object Cue must always be presented on its own. Back in 1991, Sally Clark (page 17) wrote:

"If any interaction with the environment and adults is to be meaningful it is necessary to ensure that the school is kept as stimulating as possible. Each room, or part of a room, should retain its own atmosphere and smells. It is also important that certain activities always take place in certain areas so that the child may come to a sense of anticipation when moved to that area... A visually impaired child may also receive his cues from smells and different textures."

Tactile cues 

A tactile cue involves touching the individual in a specific way on their body to get their attention, inform them of what is going to happen next and provide feedback. The individual may already be provided with a variety of natural touch cues and so, formalising the use of touch can ensure that the cues are presented in the same way each time by all communication partners.

Consistency will develop the individual’s ability to attend to the touch cue, helping them learn the meaning of the touch cue by making an association between the cue and the POLE. This will help the individual begin to anticipate what will follow. This can result in the individual producing a response to demonstrate their understanding of the cue.

It is important that the cue used for each activity is different (e.g. made in different places on the individual’s body) so that the individual can distinguish them easily. Initially, only a few touch cues should be presented and when the individual begins to show anticipation and/ or comprehension of them, more cues can be added.

Touch Speech cue

A touch speech cue is a simultaneous touch–speech production in which keywords or phrases are paired with a consistent touch signal on the individual’s body or limbs (Goold and Hummell, 1993). Examples of touch speech cues would be saying “Sit down” while gently pressing down on the individual’s shoulder, or asking them to get up by saying “Get up” while lifting their arm. When selecting touch cues, consult an occupational therapist regarding the information relating to the individual’s responses to touch.

Olfactory cues

Olfactory cues are smell cues that are associated with POLEs. They can be used either as a Sensory or an Object Cue.

Movement cues

Movement cues inform the individual of the motions that are related to an activity.

These cues are used especially when handling, positioning and moving the individual in certain ways to help the individual associate the movement with the upcoming activity. Movement cues are a useful way of promoting the individual’s understanding that their movements can regulate other people’s actions.

Performing a movement with another person develops the individual’s awareness and understanding of “self” within their social and physical environment. When selecting movement cues, consult an occupational therapist and/or a physiotherapist regarding specific positioning and handling related to the individual’s tone. Do not use movement cues that will cause reflexive or involuntary responses. 

Location Cue

This refers to the place/area where an activity occurs. Designate an area where activity should occur and carry out the activity in the particular place consistently. Quill (2000) suggests a variety of strategies you can use to help the individual learn to associate the place with the activity. For example, you can separate large spaces (e.g. a classroom) into smaller defined areas, then have items that are related to the activity in each specific area. When engaging the individual in a particular activity, reduce clutter and distractions. For example, if playing with a particular item, have only a single toy, activity or play set.

Orientation Cue

Your classroom may not lend itself to Location Cues. A variation on this is Orientation Cues. In this methodology, the individual does not move to a specific area of the room but, rather, changes orientation such that s/he may be facing the front of the classroom for one activity and the back of the classroom for another. Given four walls, there are four different orientations the individual can face, supporting four separate activities. Furthermore, each wall could house some display suited to the activity in question such that, on facing a particular wall, the individual is engaged in the activity corresponding to the display. The individual may eventually come to associate his/her orientation in the room with the activity to follow. 

Taste Cue

A cue that provides information about the taste of the item. Individuals can use this information to make decisions about their preferences. For example, during mealtime offer the individual a spoonful of vanilla ice cream and liquorice ice cream. Based on the individual’s response you can interpret their preference and give them the ice cream of their choice.

Gesture/Sign Cue

Gestures are commonly used body and facial expressions that mimic an action or the shape of an object. These movements can be used to provide information to the individual about a variety of places, activities, objects, people and actions. For an individual with little or no vision, the communication partner can present the gesture on the individual’s body. Once an individual learns to pair a gesture with its meaning they can begin to anticipate what is going to happen next and produce the appropriate response. Try to use signs that are iconic, i.e. are easy to understand and closely resemble the item/concept that they are meant to represent, although an abstract sign or gesture frequently and consistently utilised may become associated with the POLE. 

Time Cue

Creating a routine or a daily rhythm where the activities occur around the same time will help provide order and structure to the day which will help the individual anticipate the activity (Blythman & Diniz, 1993). 

Self Stimulatory Cue

This form of cueing takes an existing, individual, undesirable self-stimulatory behaviour movement and uses it to cause a more acceptable outcome to ensue. The movement is linked via a switch to a socially acceptable source of stimulation such that the individual is rewarded with Sensory stimulation equivalent (or greater ) than that provided by the self Injurious behaviour. See the section on the use of a string switch below. The string switch can be used to build Contingency Awareness. 

Contingency Awareness 

​"If we have discovered the learner with PMLD is beginning to learn about 'contingency awareness' then that should become central to all their learning. School children may be working on a range of curriculum activities and adult learners are likely to be involved in a range of community activities but what is required for all at this stage is for teachers and supporters to provide as many opportunities as possible to practice contingency awareness. This should be done throughout the day, preferably with a range of different resources so the person can learn to generalise his/her understanding in many different situations." (Lacey, 2015, page 45)

​"This suggests that response-contingent learning opportunities, and especially for children who demonstrate few instrumental behaviours, is warranted as a form of early childhood intervention" (Raab, Dunst, Wilson, & Parkey 2009)

"The interventions and results show that rather simple and easily implemented contingency learning games can have rather dramatic effects on child learning, which included extended benefits to both the child and his or her caregivers. Interestingly, many of the interventions used with young children with profound developmental delays and multiple disabilities do not include the promotion of child behaviour competence (Dunst, Raab, Wilson, & Parkey, 2007; Winefield, 1983). Rather, the interventions typically involve non-contingent stimulation to evoke child behaviour or passive manipulation of child movements." (Raab, Dunst, Wilson, & Parkey, 2009)

"Research has shown that people with PMD are aware of or can be made aware of such contingencies (Lancioni et al., 2003; Saunders et al., 2003). Learning contingencies enables the individual to have control over his/her environment." (Petry et al, 2007c, page 132)

​Contingency Awareness (often referred to as understanding 'cause and effect') is a consciousness of a relationship between two different events; that is, an understanding of a relationship between actions and the outcomes those actions elicit in the environment. A baby in a cot kicks its legs in a certain way and accidentally makes the mobile, suspended above the cot, move. After some repetitions of the leg kicking, the child begins to form an association between his actions (kicking his leg in a certain way) and the movement of the mobile. At this stage, the child may not understand how the action of his leg is causing the mobile movement but nevertheless still recognises that s/he can exert control and has thus made a connection. 

Contingency Awareness is an important milestone for Individuals Experiencing PMLD. However, the combination of cognitive, physical and sensory impairments experienced by many acts as an obstacle to blocking the typically developing pathway. Indeed,  the (inadvertent) actions of Significant Others may have a detrimental contributory effect further increasing the size of the obstacle. As Significant Others routinely:

• anticipate and fulfil the needs of the IEPMLD (Individual Experiencing Profound and Multiple Learning Difficulties)
• block access to experimentation by the IEPMLD.

the process begins to teach the Learner that s/he is not an active player in controlling the environment. Indeed, the Significant Other’s fulfilment of the needs of the individual can eventually lead to the development of learned helplessness and passivity:

"Learned helplessness occurs when it is unclear to the learner that he or she is able to exert control over the environment... For many learners, their social history has offered few opportunities to self-select desired objects, people, or activities. At meal times plates are prepared and distributed. Additional servings are provided automatically. Coats are handed out and doors open when it is time to go. Thus, throughout the day, the caregivers do virtually everything for the learners. Initially, some learners may have attempted to self-select items of interest, but were actively encouraged not to do so." (Reichle, J., 1991, p.141)

"The children's physical disabilities place considerable restrictions on their personal development. There are activities in which they will be unable to participate, and many fields where they will gain only limited experience Part of this limitation is caused primarily not by the motor handicap, however, but by the fact that, due to negative experiences, they believe they are unable to do anything. Later on, they will no longer try to do things that they perhaps would have been capable of. They learn that they are dependent on others because others do things for them that they would be unable to manage alone. At the same time, they will experience that they are an inconvenience, that they are a hindrance and that the adults are most content when they are passive. The adults' attitude to the children, which the children to a great extent assume themselves (cf. Madge and Fassam, 1982), therefore plays a significant role in forming their life and opportunities for personal growth." (Von Tetzchner, S. & Martinsen, H. 1992)

"All children are dependent upon adult caretakers for the fulfilment of their physical and emotional needs. In the process of becoming autonomous, children explore and test their world and begin signalling their growing independence to caretakers through physical actions and spoken messages. If provided with an adequate climate for growth, an increasingly solid foundation for independence in adult life will be formed. However, for children with severe communication and/or physical limitations, this process of self-growth may be overlooked or suppressed. Because many children experiencing the aforementioned challenges are not able to signal their readiness for exploration or independence in traditional ways, parents and other caretakers (e.g. professional service providers, educators, etc.) are inclined to continue to act as direct or indirect agents for fulfilling the child's needs. When later provided with adequate means to express, query, or explore, (e.g. assistive technology) the child may persist in a more passive state due to learned helplessness or learned dependency." (Sweeney, L. 1993)

Over 100 years ago, in an 1895 publication, James Baldwin outlined a relationship between a child's beginning to see actions as the cause of environmental effects and increases in responses of a social/emotional nature such as excitement, laughter and smiling. Likewise, in studying his own children, similar observations were made by Jean Piaget (1952). In support of these claims, Haith (1972) and McCall (1972) pointed out that, because such cognition is pleasurable, the ability of a child to understand that s/he is the cause of a particular environmental consequence produces social-emotional behaviour.

Almost all IEPMLD show at least some contingency awareness:

• Those that hit themselves or poke themselves in the eyes must be 'aware' that doing so brings sensory stimulation: they have made the link between the action (self-harm) and response (sensory stimulation);
• Those that rock back and forth must be doing this for some reason. It is generally assumed that this is stimulatory behaviour which brings some reward. At some point the individual must have made this connection and continued the behaviour;
• Those that twirl or flap objects by their eyes or their face at every available moment must have, at some prior point, made a connection between the action and a favourable sensation; and 
• Those that will reach out and repeatedly tap a switch surface must be doing it continually (until they grow tired of it or until the switch is removed) for some reason. It must be providing the person with some sensory feedback which is fulfilling/motivating in some way.

The fact that these actions are repeated seems to be indicative of a connection between an action (slapping, rocking, flapping, tapping...) and an (internal) event (favourable sensation). In a sense, these actions, often viewed by staff members pejoratively, have, at least, a positive aspect: if a Learner is behaving in this manner then s/he must have made a connection and, having made one connection, the Learner must be capable of making other connections given the opportunity to do so. 

The words 'given the opportunity begs the questions: 'how do we give?' and 'what opportunities?'. This and other of our articles hope to provide at least some answers to those questions. One avenue, worthy of further exploration, is the use of (switch-activated) assistive technology as a means to this end. This has been recognised since the earlier days of electronic assistive technology:

Research has demonstrated that switch technology can be used successfully to facilitate the formation of contingency awareness in individuals with severe and/or multiple disabilities. (York, Nietupski, & Hamre-Nietupski, 1985) 
​
"I have suggested that learning contingency awareness via microswitch control might be a valuable approach with multiply impaired students." (Goldbart, 1994, page 57)

It is extremely important that this area of development is addressed by providing frequent, structured opportunities to help Learners gain an understanding of contingency awareness and, thus, discover that they can exercise control over their surroundings and others in their surroundings. Included in this and other of our articles are a number of suggestions for ways to assist with the development of contingency awareness. You are, of course, free to adopt, adapt or abrogate any of them. However, we hope that at least some of our articles will inspire your thinking.

String Switch Self-Stimulatory Sessions

What is a string switch? It's a switch that is activated by pulling on a string that comes out of the side of the box housing the technology. It is small and easily mounted to a wheelchair or a chair/table leg (I use just an elastic band!). It is an AbleNet product and thus will be available from you local AbleNet dealer.

There are many Learners who don't really comprehend switches, simply ignore them, or push them away. the string switch may be ideal for such a Learner. 

Using a string switch is a means to effect sensory extinction through the accidental or purposeful triggering of alternate sensory input. The string switch is activated by less than one ounce of force pulling on the string. The Learner is not going to pull on the string? Yes, s/he is! Here is how you set it up. You will need a couple of strong elastic bands, a wrist band (a really cool one) or a headband and a device for the switch to operate: I typically start with a good floor-mounted fan. The elastic bands are looped through the string of the switch and attached to the sweatband (loop them through no need for knots!) (see the illustration below) the switch is attached to the fan (in this example) via a PowerLink (supplied through your local AbleNet dealer) or similar device that permits a mains device (such as a fan)  to be operated via a single switch. The string switch box may be attached to the wheelchair or a table or chair leg (just use an elastic band). The wrist band is placed either on the Learner's wrist or on the Learner's ankle (the headband goes on the head obviously). The string switch is attached in this manner to the part of the individual’s body that is used to self-stimulate. If the individual self stimulates by eye poking, attach the switch to the arm that is used to do the poking. 
 
It is possible to adjust the distance the Learner's hand has to travel (in any direction) before the string switch is activated simply by adding an extra elastic band between the string and the wrist band. As the Learner moves his/her arm about there will come a time when it is moved a sufficient distance (accidental triggering) to cause the switch to be activated and the fan to blow (on to the Learner). If the Learner attempts the self-stimulatory behaviour, the movement of his/her arm will trigger the switch and, in this example, cause the fan to blow thus providing acceptable stimulation. The Learner will not make the connection between an arm movement (or leg movement or head movement) and operating the fan at first. Indeed, it may take some time. However, it is hoped, that after a period of time, the Learner may come to realise the connection. The PowerLink should be set to 'count' and a record should be kept of how many switch activations take place in a specific period of time (ten minutes?) each time this methodology is introduced to the Learner. If the number of activations from a baseline session:

• stays approximately the same it is likely that the Learner has not made any connection;
• increases over time this may imply that the Learner is starting to make a connection; and
• decreases over time, it may be that the Learner is tired, bored with the sensation, does not like the sensation, or the switch is not working!

The idea is a methodology to give Learners a way to control peripheral items easily through simple body movements which, unlike standard switches, are non-directional (The string switch does not care about the direction of the arm only the distance travelled which you can easily and simply adjust).

Learners who self-harm by slapping their faces or poking their eyes (for example) may be distracted by this methodology. As they move their hand to poke their eye, the string switch is activated before this can happen (purposeful triggering; purposeful triggering involves the use of the Individual's own body movement to self-stimulate. As the Individual moves the body part, it triggers the switch which, in turn, provides an alternate, more acceptable, form of sensory stimulation). The fan then blows into the Learner's face providing them with a safer and more acceptable alternative to eye poking. Eventually, it may be possible to fade the strength of the sensory stimulation and yet still motivate the Learner to continue to control the system thereby reducing the challenging behaviour.

In Conclusion

Effective communication is not just a matter of luck, especially with individuals with the most complex communication challenges. As the more skilled participant in the two-way interaction process the onus is on us to interact in ways that facilitate communication.

To ensure that this can happen we must: 

• have an in-depth knowledge of strategies used by the individual. 
• be aware of the circumstances under which communication is facilitated. 
• be aware of the effect of our own behaviour on the communication process (McDonald, 1997). 
• be consistent in the use of alternative approaches to communication throughout the day and across the curriculum (and school and home). 
• ensure that all staff are adequately trained in good practice in the delivery of the various forms of AAC in use and that all receive regular refresher training periodically.
• ensure that all staff follow the rules and guidelines as set out in the policy and procedure documentation covering the specific aspect of communication practice. Policy and procedure documentation should be updated annually and readily available to all staff at all times.