Phoebe Caldwell and Janet Gurney

(Introduced by Rorie Fulton)

1.INTRODUCTION From Autism Wellbeing • Responsive Communication is an approach that can be used with individuals regardless of their age, gender or ethnic origin. • Responsive Communication is a combined approach which both attends to sensory difficulties and uses body language to promote emotional engagement. This series of short films shows an extended conversation between Phoebe Caldwell (DSc, Expert Responsive Communication Practitioner who has worked with autistic people for 45 years) and Janet Gurney (BA, PGCT, Director of Training for Us in a Bus, a service based in Surrey that supports adults and children with profound and multiple learning difficulties and autism).
2.GABRIEL A big thank you to Pavilion Publishing for allowing us to include this case study. This series of short films shows an extended conversation between Phoebe Caldwell (DSc, Expert Responsive Communication Practitioner who has worked with autistic people for 45 years) and Janet Gurney (BA, PGCT, Director of Training for Us in a Bus, a service based in Surrey that supports adults and children with profound and multiple learning difficulties and autism). • In the first half of this clip, Phoebe is looking for ways of catching Gabriel’s attention. Gabriel is very interested in vibration, but note that both his and Phoebe’s attention becomes focussed on the vibration unit rather than on each other. This is one of the difficulties that can come up when using equipment. • At the end of the clip, Phoebe blows in Gabriel’s ear, as during the break for lunch, when the camera was not recording, she has seen him half-inflate a balloon and then let the air out in his ear. Gabriel shows he can ‘generalise’: he knows he will get a response if he flicks his string, so he bangs the sink and turns back to her to see if she will respond.’ • Look for the physical feedback the person is giving themselves. This is what will have meaning for them. • Respond to the person’s sounds, movements and rhythms rather than copying them exactly, and respond particularly to how they are “talking” to themselves.
• Difficulties in processing incoming sensory messages can make it hard to understand and keep up with what is happening.
4.SENSORY PROCESSING AND REPETITIVE BEHAVIORS • While the sense organs may be functioning effectively, messages are getting scrambled on the way to the brain or during processing. • There can often be interdependence of sensory processing – “when my visual distortions are corrected, I hear better”. • By focussing on their repetitive behaviour, the person seeks to block out incoming sensory stimuli that may tip them into sensory overload. The person knows what they are doing, it has meaning for them. • Rather than trying to reduce repetitive behaviour, use it as the basis of a common language to engage attention and as an opportunity for interaction. • We are shifting their attention from solitary self-stimulation to shared activity.
• The person seeks to separate themselves from the perceived source of sensory overload by avoidance, shut-down, or aggression directed at self or others (the fight, flight or freeze response). • We need to look for and reduce the triggers to distressed behaviour. • Time lag – anticipating the sequence of behaviour
6.AUTONOMIC STORM • The autonomic nervous system (ANS) is the part of our nervous system that controls systems such as our breathing rate, heart rate and body temperature. • We have triggered the body’s self defence system • Prior to onset of self-injury – and probably also outwardly directed aggression – there is a spike in activity in the sympathetic nervous system (part of the ANS). This spike in activity is associated with pain, confusion and heat. • Lower the sensory input: do not try and “talk them out of it”, you will only add to the person’s sensory overload.
• Behavioural judgements and strategies are based on our own sensory experience, not that of the person with autism. • For many autistic people, their visual experience is scrambled through faulty processing (Irlen Syndrome) triggered by bright light, certain colours or patterns. Wear dull-coloured, plain clothing. • Irlen Syndrome / scotopic sensitivity does not show up in ordinary eye tests. • Many individuals with Irlen Syndrome are helped by coloured light or tinted lenses – each person will require their own, prescription lenses. • Scans show chaotic sensory activity in the brain, which is corrected by using the right colour. • It is essential to be tested by a trained professional who is also good with people with autism. To find out the nearest suitably experienced Irlen practitioner to you, please contact [email protected]“. • Addressing confusion in one sensory mode can improve processing in another.
Over-sensitive responses to sudden sounds, quality of voice, overlapping sounds, loud sounds, certain frequencies.
Some autistic people respond very positively to wearing active noise-cancelling headphones which filter out background noise but admit nearby sounds and speech, for example a child would hear their teacher in class.
Do not use ordinary ear-muffs or ear defenders (these are passive noise-cancelling aids) as the person may simply tune out and stop listening.
We must listen to what autistic people are telling us.
Disclaimer: Reference is made in this clip to Bose active noise-cancelling headphones as we have had very positive results using these. Other brands are available and neither Phoebe Caldwell, Janet Gurney nor The Caldwell Autism Foundation has any connection to Bose.
• Our bodies have different sensors for touch and for pressure. • Proprioception: messages from our joints and muscles which provide information about the movement and position of our body, especially our limbs, independent of vision. • Many autistic people are under-sensitive to proprioception – their brain is not giving them a clear picture of what they are doing. • This also affects their sense of boundaries, what is ‘me’ and ‘not me’. • People will try and give themselves massive proprioceptive inputs by running, climbing, rocking, jumping, banging, biting, scratching their hands, tip-toe walking and so on in order to know what they are doing. • Pressure garments can help, as can providing the person with strong proprioceptive inputs such as trampolining or vibration. Such inputs are not recreational, to provide meaningful proprioceptive input to the individual they need to be offered three or four times a day.
• Some autistic people are over-sensitive to emotional warmth. • The person may experience negative responses, and these can sometimes be aggressive. The person may experience a surge of pain, it feels as if they are being attacked – ‘like being hit by an emotional taser’. • Such responses can be triggered by a variety of positive or warm approaches by the communication partner. The person may be sensitive to being spoken to directly, being praised, being called by their name, eye contact and so on. • Where possible, avoid triggers.
• The person may be unable to process changes in their routine. • Hormonal surges can cause difficulties as the person’s body changes during puberty. • The person may experience heightened distress, they may have outbursts that are difficult to assign to a particular cause. • The person may become more sensitive to sensory issues that previously underpinned mild sensory overload. • Simplify choices. • It is important to understand the difficulties caused by damage to the corpus callous (the band of fibres joining the two halves of the brain) which make it difficult to understand reasons why they may not fulfil their particular need at the time currently omitted.
• The person’s need for control may be rooted in an attempt to keep track of what is happening around them when the sensory input they are receiving is scrambled. • It is important to address sensory difficulties, and this will often require you to be prepared to negotiate. • Time: the person may understand the sequence of events or activities but not the interval between them. • When engaging with someone whose behaviour puts you at risk, stand outside the room they are in and try to engage through their language (Intensive Interaction) before entering their personal space.
• People with autism may have damage to the speech processing areas of the brain – understanding speech (Wernicke’s area) and speech production (Broca’s area). In addition, communication between these two areas may be compromised. • Using objects of reference can bypass such miscommunication between the speech areas of the brain by providing physical, external clues. • Some autistic people may understand what is said to them but be unable to organise the muscles needed for speech to produce a response.
This series of short films shows an extended conversation between Phoebe Caldwell (DSc, Expert Responsive Communication Practitioner who has worked with autistic people for 45 years) and Janet Gurney (BA, PGCT, Director of Training for Us in a Bus, a service based in Surrey that supports adults and children with profound and multiple learning difficulties and autism). • Speech is one of the most difficult inputs for autistic people to process and can cause high levels of stress, thereby further limiting the person’s ability to process. • Keep asking yourself: which is the best way of communicating with this particular person? What works best for them? • When working with non-verbal people, use a combination of body language, gesture and mime. This can also be a useful approach to support using speech with a more able person. • One problem with flash card systems is that some autistic people are not able to distinguish the object from the background on the card (checking for Irlen Syndrome can sometimes resolve this). • If using speech, keep it simple. Remember to “finish” your sentences. • Some people will learn socially acceptable signs without attaching meaning to them. • In an effort to conform, some autistic people will develop two distinct voices or personalities – one that conforms to social norms and one that shows how they actually feel. Such situations can result in a mistaken diagnosis of schizophrenia.
15.ECHOLALIA AND RHYTHM • There are two kinds of echolalia – immediate copying and repeated phrases from the past. • Repeated phrases from the past are usually associated with past traumatic events. • We can hear the voices that have hurt the person. • Respond not by repeating words but instead using the pitch and rhythm of the words. • Have a conversation through rhythm.
• Different voices express, on the one hand, socially acceptable communication, and on the other, how the person actually feels. • Instead of different voices, the person may use a “good puppet” and a “bad puppet”. • Rejection of “unacceptable feelings” can lead to projection of negative affect and loss of sense of self in adulthood. • We really need to take notice of how the person is feeling by acknowledging their negative feelings and using the words they do as a template – (“I want to hit Phoebe” – “you must feel you want to hit Phoebe”). In doing so, we can support the person to re-centre their sense of self. • Validating the person’s negative feelings can reduce their stress and negative behaviour rather than increasing it. • Do not ask questions as they add to sensory overload.
• Some autistic people experience pain without connecting to its cause, for example they can feel that their bladder is full but not connect this sensation to the fact that they need to go to the toilet. • Trigeminal neuralgia (TGN): pain felt in the jaw, nose and the front of the head. It is caused by exposure or compression of the trigeminal nerve and affects some people with autism. • Symptoms of TGN – a combination of unattributable outbursts of screaming, pressing below or behind ear the lobes, chewing, apparent tooth pain, hitting their head and/or rubbing their nose (for more information, please see chapter two of Phoebe’s book The Anger Box [2014, Pavilion Publishing]). • The symptoms of TGN may be misdiagnosed and attributed to the person’s autism. Most research on TGN appears in dental journals. • affect may increase their feeling that they have lost their sense of self.
• Individuals will retreat and sometimes mutter about traumatic events. • It is extremely important to acknowledge and empathise with the person’s negative feelings.
19.ATTACHMENT • Some autistic people present as if they are experiencing attachment disorder (i.e. not having formed a secure, stable bond with their parents). • While this may in some cases be so, it would be wrong to automatically link such a presentation to negative parenting. Rather, it may be that the autistic child was unable to process their parents’ loving approaches.
• Having looked at factors that increase anxiety, we are now looking at ways of reducing anxiety through meaningful communication. • Look carefully at what the person is doing. What physical feedback are they giving themselves? We need to learn the language that has meaning for them. • Empty yourself of your own agenda and use the person’s body language to transfer their attention from solitary self-stimulation to shared activity (Intensive Interaction). • Read the person’s body language – it expresses how they are feeling. Do not worry about what it means in terms of information, tune into the feeling of what they are doing. What you are aiming for is emotional engagement. • Confirmation of what the person is doing is important. Confirm what they are doing, it allows them to move on. • You can start by “copying” what the person is doing but gradually introduce small variations of pitch or rhythm – always using their language. • Keep up with any new communicative initiatives the person offers. • Make sure that what you are doing is lowering the stress level rather than increasing it. • The use of body language was introduced in the 1980s by Gearing Ephraim, who called it “Augmented Mothering”. This was later changed to “Intensive Interaction”by Dave Hewett and Melanie Nind, to make it clear that the approach is able to meet the needs of children and adults of any age.
• Observe what the person is doing to connect with themselves. • Look for any feedback the person is giving themselves that has meaning for them – it could be as subtle as quiet tongue clicking or listening to their own breathing rhythm. • Is what you are responding to raising or lowering the person’s stress level? • Respect pauses – actively do nothing – hold the space.
• It is a mistake to label “difficult to manage” behaviour as “challenging behaviour”. Think of it, rather, as distress behaviour triggered by sensory overload. In an effort to reduce the sensory overload they are experiencing, the person may direct their distress behaviour at you, because they (rightly or wrongly) see you as the cause of their sensory overload. • Try to establish contact with the person by using their sounds before moving into their personal space. • Let the person know (by gesture or simple language or both) what you are going to do before you do it. Make sure you present it in a way that the person can take on board. • If you sit down, you present less of a threat. Do not be judgemental. • Aim to lower the person’s anxiety by engaging with how they feel by means of an exchange of body language (Intensive Interaction). • Think about the sensory trigger(s) that may underpin the person’s distress behaviour. Aim to meet their sensory needs rather than attempting to contain their behaviour. • At the same time as being totally open to the person, monitor your own “gut reactions”.
• Try to give empathetic and meaningful responses to bring coherence into an autistic world that is sensorily scrambled. • Try to centre the person rather than hype them up, engage rather than over-stimulate. You are not playing games, or entertaining the person, but sharing something precious between the two of you. • Try not to feel self-conscious. It means you are focussing on yourself and worrying about what others think of you, rather than on the person you are trying to engage. • Each time you use a signal that their brain recognises (without having to process because it is part of the way they “talk” to themselves), you attract the person’s attention instantly. • While any interaction using body language (Intensive Interaction) is helpful in reducing stress, it works best if you use their language as a part of the way you communicate with the person as a matter of course, rather than in regular “Intensive Interaction sessions”. • Let the person lead. Once they are confident that you will give them a meaningful response, they will introduce new initiatives to ‘test the system’. • If the person is not in the mood, do not insist on interaction. Back off, but be prepared and available for interaction if their mood changes. • Teach as many people in the person’s support circle and family how to support them in the way to which they best respond. • You can kick-start a conversation using the person’s language. • You can respond to the person in another mode, that is, answer a sound with a movement or pressure that reflects their initiative. • Become bilingual, use the person’s sounds to “gift-wrap” words they find difficult. • Make sure that other support people present know what you are doing and that they do not interrupt with speech. It can break a precious interchange. • Non-verbal people are more likely to come out with speech if you lower their sensory stress levels by using their language. • You do not have to be an expert to learn to use body language to communicate. • Try to make sure that as many people as possible in the circle of support use Responsive Communication to communicate as otherwise the person may fixate on a particular individual.
Permission to use the film clips of Pranve was kindly given by his parents. Phoebe’s book “Finding you, Finding me” is dedicated to Pranve.
• Using film (recording an interaction then playing it back later on to “unpack” or interpret what took place) is invaluable to see what we are missing, since it is not always possible to pick up all the subtle points of body language at the time. It can also help to pick up on any triggers to distressed behaviour. • Filming people aged 18 and over requires the person’s consent which, for many of the people we support, may not possible as they may lack capacity to consent. In order to obtain consent to film a person aged 18 or over who lacks capacity, the Mental Capacity Act 2005 requires that a Best Interests meeting takes place to decide whether or not filming the person is in their best interests. • For individuals under 18, their parents can give consent for them to be filmed. • Consistency: the use of film can help to show other people how to use body language to communicate, but remember, each person’s approach will be slightly different since each of us will be developing our own personal relationship with the person.
PROPRIOCEPTION AND INTEROCEPTION Phoebe and Janet feel they need to add a couple of films to the series ‘Responsive Communication’, to talk about Proprioception and Interoception. This film discusses hyposensitivity to Proprioception and how, by paying attention to the feedback a person who is banging themselves or scrunching their toes, etc. we can help them feel anchored rather than floating and unattached, giving them some sense of where they are and what they are doing, and so reduce anxiety. The second extra clip looks at Interoception, the messages that we are getting from our internal organs such as heart beat, which inform our brain of our emotional state and how, a better understanding of this also helps us to understand why Intensive Interaction actually works so well.

CONCLUSION ( Rorie Fulton)

• Responsive Communication (a combination of addressing sensory sensitivities and Intensive Interaction) is transforming the lives of autistic children and adults and their families across the UK.

• Whilst Responsive Communication is a deeply supportive approach that brings about many positive changes, it cannot address the root causes of autism. It can, however, successfully relieve some of the attendant distress of the condition, both for the autistic person and for those who support them.

Camera, sound, editing: Imogen Stidworthy