Rosemary Trustam attended an inspiring workshop where she learned how Intensive Interaction provides a wider understanding of people with complex and profound learning disabilities.
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What is Intensive Interaction?
Some would say that Intensive interaction has been around forever – it is a natural part of the way we all learn to communicate. In the late 1970’s Geraint Ephraim, a psychologist at a North London hospital studied the way mothers and babies connect, and developed an approach he called Augmented Mothering, to transfer some of this ‘instinctive’ interaction to supporting people with profound learning disabilities to make the most of their communicative potential. Teachers David Hewett and Melanie Nind joined him in this exploration, renaming the approach Intensive Interaction. Later Geraint Ephraim was supervisor to Phoebe Caldwell when she was awarded a Joseph Rowntree Foundation study fellowship to develop the work she had been doing with adults with complex needs.
These separate threads all focus on the need to offer clear confirmation of our interactive partners’ internal messages. This confirmation, or mirroring, for ‘neuro-typical’ babies (ie. those developing typically) helps the move from expressive to intentional communication. However, if a baby has profound learning disabilities and additional sensory issues or autism, their cognitive barriers stop them absorbing the confirmation their care givers are sending them, so communicative development is not so easy. What is easier to absorb is the confirmation, the feedback, they give themselves. People can get ‘trapped’ in their inner world of self-confirmation, through repetitive patterns that are more meaningful to them than anything the outer world is offering.
By mirroring and celebrating the sensory feedback a person is giving themselves through their behaviour, in a meaningful, accessible and interesting way, Intensive Interaction helps people to access the outer world, and leads to exploring the fundamental steps of communication. In turn this can motivate social interest, self-confidence and wellbeing.
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For the last 25 years in a quiet corner of Surrey a group have been doing some amazing work with people with more profound learning disabilities and complex needs. The group’s aims are to encourage interaction and to encourage people’s interest in the social world.
Us in a Bus started life 25 years ago as a short-term Scope project. The project was so successful the group set itself up as an independent charity to continue the work. Chief Executive Janet Gurney has worked with Phoebe Caldwell using Intensive Interaction and runs training workshops to widen its impact. Janet is an inspiring trainer, full of practical experience to back up the theory of Intensive Interaction.
I was a participant at a recent Introduction to Intensive Interaction workshop led by Janet. Other participants included parents, support workers, service managers and Speech and language therapists. Janet explained how observation is the starting point. We need to notice what the person is doing, to speculate about what the action may feel like to them to do it, and to explore how we can respond by echoing an aspect of that sensory feedback back to them. Initially, there might be less interpretation and more observation.
Empowerment
She cautions against looking for ‘problematic’ behaviour but to look instead for what they do when chilled out, how they connect with themselves. She also urged communication partners to ensure the control and pace rests with the person – this will nurture the sense of empowerment that comes with the knowledge of being ‘heard’ and respected. We need to guard against pushing forward for ‘progress’ and be aware that the person will let us know when they are ready to move on.
We heard about Robert, in his late 40s, who has profound learning disabilities and dual sensory impairment; it would be easy to think he is ‘doing nothing’. But when we take the time to observe carefully, we can see that he likes to make a popping sound with his lips –this seems important to him, as he repeats it to himself regularly. He lacks mobility and some muscle control and seems comfortable but inactive in his a specially made armchair. But again, when observed carefully we see him to wriggle upright and lean his head to one side for a few seconds before making his popping sound; he then strokes his cheek. It’s a regular ritual, important to Robert and gives us an opportunity to let him know he has been noticed by the ‘the external world’. The approach adopted was to sit by him, gently leaning against him, for some time over several weeks until he was thought to be comfortable with this. His communication partner then introduced touch, related closely to the sensation he was creating for himself, e.g. gently but firmly stroking the side of his neck when he leans his head to one side and echoing his popping noise with a tap. Janet stressed it is important not to be put off if the initial reaction is negative – a slight move away may well not be a final reaction. We all take time to adjust to something different and we need to give Robert the opportunity to assimilate the experience before we assume he is not interested.
Awareness
Over time, what might happen, as in Robert’s case, is an awareness that the person is interested. He began to lean further towards his communication partner in anticipation of the touch. This is the exciting stage of realising he is controlling someone else’s behaviour. Without this knowledge, there can be little motivation to communicate, but with it, the world starts to open up. It could be important to spend a regular period, for example 20 minutes a day, to reinforce and build this intentional communication. Some people’s span of attention may be very limited, so we might be peppering their day with small bursts of intensive interaction to build messages of recognition, easily recognisable as theirs, which would be easy to process, attention-grabbing and encourage listening. What works will vary with every individual. If a change of staff occurs, and someone else gets involved, it is a good idea to show a video of the work in a team meeting. As well as a willingness to speak the person’s language, recording and sharing is vital for consistency of approach. We need to remember that intensive Interaction is not a way of merely entertaining, stimulating or changing people’s behaviour – it is a joyful way of someone learning about the positive influence they can have on others and themselves.
Many people with autism have issues about choice and control which may include the importance of habits which give them pleasure and which can be copied and celebrated. Other behaviours can be hard to understand and copying or celebrating them could make things worse. How someone with autism or profound learning disabilities processes their sensory messages can be difficult to understand (1) and aspects can include hypersensitivity and fragmentation. In the case of hypersensitivity, we too often assume odd or challenging behaviours have emotional roots whereas close observation might reveal a different cause. For example, someone who strips off their clothing might indicate they are in acute discomfort from the way their clothes feel to them. An example Janet gave was of how someone without learning disabilities but who had autism had suffered pain for days after simply trying on clothing that was tight and of a harsh material. Now they ensure their clothes are loose and of soft material.
Problems with patterns
Hyper-sensitivity to stimuli is common in autistic people who can have difficulty separating strands of information. So if there are multi-coloured clothes, patterned blinds, busy notices, etc. around, all jostling for attention, people won’t get important facial information when we know eye contact can help non-verbal communication. Many have problems with patterns – akin to dyslexia where words blur – the speed of the eye receiving information is out of sync with the speed the brain might be processing it. We need to see if we can create an easier visual backdrop or investigate testing for scotopic sensitivity (for which coloured lenses might be prescribed). Janet quotes Theresa Joliffe describing how “objects can seem frightening; moving objects harder to cope with and, if they make a noise, harder still, whilst people are the hardest as they move unexpectedly, make noises and place all sorts of demands which may be impossible to understand”. The person may find coping mechanisms by looking at the carpet to focus, or flapping their fingers to slow down the movement or maybe touch to check. When other things are still, or when anxiety is reduced, people’s processing may become easier.
In Phoebe Caldwell‘s video Learning the Language (2) Gabriel walks, runs around, twiddles, bangs, makes noise… He is locked into repetitive behaviours and not engaging. Phoebe gets alongside him, copying him, trying different ways to focus on his world and what is meaningful to him. She follows his lead to access his inner world and draw attention to the outside. Eventually he shows interest, almost surprise, at someone using his language. She focusses on the rhythms he is using – the way he flicks string, for example. When he gets really interested in how she is responding to him, he moves so close to Phoebe that she blows in his ear. He tilts his head for her to blow in the other – it has become a mutual and fully intentional communicative exchange, clearly enjoyed by both parties.
A parent at the workshop, Jen, told us about her son Christopher, who has severe autism and who doesn’t communicate verbally. She communicated instinctively by copying and embellishing his behaviours, later learning that this had a name – Intensive interaction. When Christopher left full time education and when she wanted an ordinary, meaningful life for him, she was told her expectations were too high. He gradually lost his home, his friends and routines, and his voice. In a residential home, for four years he was hitting his head on the wall, was left alone, staff believing he chose to stay in his room, labelled as lazy and without feelings. She found Us in a Bus and brought Intensive Interaction into his life and he slowly re-entered the world. There are still challenges in his life, but the work done with him in one year has increased his confidence and his distressed behaviour has significantly decreased.
Satisfying sense
Janet also discussed with us how the things people enjoyed most could be things that we found socially difficult. People’s expressive behaviours might include exploring bodily substances in a way we would find hard to engage with. We need to find a way to be close enough to properly observe and engage in the aspects of the exploration that we can and should share. Sitting too far away and trying to interact from a distance, as we don’t like the smell, or feel concerned about germs, may mean we miss important behaviours. A young woman using saliva in an imaginative and rhythmic way, but which you want to keep your distance from, might mean you miss the fact that she is humming quietly in time to the noise she is making with her saliva – and it is the humming you can connect with! Imagination, creativity and willingness are all vital aspects of Intensive Interaction. And the benefit is the deep and satisfying sense of connection it can lead to.
The critical message from Janet is that to help people we have to get inside their world, observing and following their lead and making a total commitment to communication. ‘We are learners building bridges to the outer world and opening up access to learning. We’re an attentive audience, using their language to applaud”.
References
1. http://www.autism-resources.com/nonfictionauthors/ThereseJolliffe.html
2. http://www.phoebecaldwell.co.uk/films.asp
For more information on Us in a Bus training go to:
http://www.usinabus.org.uk
Us in a Bus’ next one-day open courses in 2016 are on 26 January; 25 May; 15 July; 13 October; 5 December
For more information about intensive interaction go to:
www.intensive interaction.co.uk
