Responsive Communication and Autism
The aim of Responsive Communication is to address deficits in both Functional Communication and Emotional Engagement. This article follows an earlier paper on Intensive Interaction, using body language to get in touch with children (and adults) with whom we struggle to interact.
Phoebe Caldwell (UK)
This article follows an earlier paper on Intensive Interaction, using body language to get in touch with children (and adults) with whom we struggle to interact. It is the first time that the author has met any of the individuals described in this article. All have a diagnosis of ASD.
As pointed out in that paper, whether autistic or not, we all have two ways of communicating with each other. We use Functional Communication to inform each other but we also monitor and interact through each other’s body language to see what our conversation partners are feeling and establish Emotional Engagement.
What has changed in the last nine years is that DSM 5 has recognized the importance of the sensory impairments in the diagnosis of the autism and we are getting a clearer picture of the part these play in triggering anxiety and stress and consequent behavioral distress.
For example, take visual hypersensitivity which can seriously delay (or even prohibit) the effectiveness of attempted interactions. To put it simply, a child whose visual intake is scrambled may find it difficult to respond to interactions of any variety (including the use of their body language), if the practitioner is wearing a black and white striped T-shirt, since this is likely to be precipitating sensory overload and interfering with brain processing. For this reason it was decided to combine Attention to Sensory Deficits with Intensive Interaction, renaming the joined-up approach as ‘Responsive Communication.’
Recently I was asked by his parents to see Max, aged six. Max was running round the house tearing up paper. (When he did this he knew what he was doing.) He made no eye contact with his parents or myself and did not respond to his parents - or to my attempts to connect with him by responding to his sounds. He was completely living in his own world. In addition, Max was eating an extremely restricted diet and refusing to go outside. However, when I altered the colour of the ambient light to blue, he calmed at once, dropped his paper, came over to me, took my hand, gave me full eye contact and started to engage with an Ipad. He looked full on at his parents, smiled and engaged with them. It was clear that something radical had shifted. He now seemed to be able to make sense of what was going on round him.
Working on the surmise that blue light helped Max to make sense of his environment, and that the colour blue might help him to make sense of his visual intake, he was offered his food on a blue plate - and ate it without hesitation. On the same basis we tried a blue coat, so that when he went out he would refer to something that made meaning when the surroundings threatened to overwhelm him. He is now able to go out without protest. Also, he now comes into the room and if the wrong colour light is on, he can manipulate the (quite complicated) remote control to find the blue light button.
Max has Irlen Syndrome, which is quite common among autistic individuals. What we know about it derives from work with dyslexia – that certain colours correct visual distortions resulting in letters jumping around, although in autism everything tends to pixillate and swirl when the brain is overloaded.
Irlen syndrome (or Scotopic Sensitivity as it is also known) is triggered by bright lights - especially strip lights – bright colours and jazzy patterns. It has a wide range of visual and related distortions that can be corrected, either by using tinted lenses (colour specific for the individual), different colour light bulbs, or tinted filters for reading. Apart from visual distortions such as failure to see the colour white, a black disc in the central vision, seeing people with ‘piggy noses’, Irlen syndrome has also been related (and corrected) in specific cases, to loss of balance and restlessness during sleep. There are also reports from children and adults who say they ‘hear better when they are wearing their glasses. They know where to look for the sound’.
Each child requires a different tint. Testing needs to be undertaken by a trained Irlen practitioner; not only one who is skilled in Irlen assessment but also one who is experienced at working with autistic children, since the responses may be subtle. (For example, the body language of a child who is desperately pursuing a repetitive behaviour, relaxes). Using a colorometric machine for assessment does not always pick up such clues.
Recent research at Cornell University which has been investigating the widespread influence of colour on brain processing show that colour affects not only visual processing but also, representation of the environment, language processing and the perception of motion. It also influences the limbic system, altering activity in regions involved in processing emotions and feelings.
All in all, we need to reduce visual overload by wearing plain block colours and making sure rooms are not cluttered with pictures and objects. Colours should be neutral and lighting diffuse. Use dimmer switches. Remember that what seems bright and cheerful to the non-autistic person may be painful to those on the spectrum. This is a particular problem in classes of mixed needs, where some of the children desperately need stimulation, while those who are autistic, need tranquillity.
Auditory hypersensitivity can be very painful. It can be set off by loud or sudden noises, overlapping speech, certain frequencies. Sometimes the child who experiences auditory overload will seek out particular loud sounds in order to drown out those frequencies which hurt them. A child is welcomed home enthusiastically by his mother. ‘Hello Davy, how are you?’ Her voice is high and loud. He pushes her away, saying, ‘No talking’ goes into the bedroom, climbs on to the table and tries to nose-dive onto the crown of his head. He has to be prevented by four people who support him. When I suggest to his mother that he might be better if she spoke to him really quietly, she emails me in a few weeks and says that instead of pushing her away, he comes to her and asks her to read him stories. Davy just could not cope with a certain quality in her voice. It sensorily overloaded him and hurt so much he was taking desperate measures to try and stop it. Since the sound of her voice has been perseverating in his head, he is now much calmer at school.
When Maddy wanted to do her homework, she used to build a cave round her table with a sofa and chairs for sides. I lent her a pair of BOSE noise reduction headphones which were designed for helicopter pilots so they can hear each other over the engine noise; they permit local conversation. Wearing these, she says she can hear the teacher in a busy classroom and is not distracted by small background noises. Her teachers said that, within half-an-hour, the standard of Maddy’s work went through the ceiling and that they simply had no idea of the level of her ability before.
Some children find it difficult to wear the headphones due to sensitivity to pressure on the head, although they may learn to do so eventually. It was two years before Nye picked his up one day and put them on and has worn them ever since. Again, his school says that the standard of his work improved. And children using the headphones say they feel calmer and families report that they are less anxious.
Another solution is the incorporation of acoustic panelling, which absorbs the sound in the walls, ceilings and floors, cutting down the sound to an acceptable level. We have to remember that we, who are not on the autistic spectrum, can filter out noise on which we do not need to focus whereas for them, the sensory overload it triggers can be extremely painful.
Some autistic children may be visually and auditorily hypersensitive but they can also be hyposensitive to proprioception (undersensitive to messages from muscles and joints of their body telling them what position they are in.) For example, if I am standing on tiptoe, I will feel pressure in my toes, my calves, thighs and back, all telling me about my posture. When I sit, I will get a whole different set of messages – pressure on my backside, my back and feet – telling me I am sitting down.
An autistic child, one who is low on proprioceptive messages, may have no idea what they are doing. There is some suggestion now that it may not be that the child is not passing the messages from their body to their brain but rather than they are being transmitted, but when they arrive in the brain they are overwhelmed by anxiety messages.
Children who have proprioceptive difficulties urgently try to give themselves stimuli that they do recognise. They will rock, bang themselves, run around, climb, jump, walk on tiptoe, any activity that tells them what they are doing.
Richard (aged 8) never stops running round the house, banging on the walls. He gives no eye contact and does not respond when I try interacting through his sounds. I ask his mother to hold him between her knees. We place a wide neoprene belt around his waist. Every time he makes a sound, in addition to answering it, I tug on the belt, so he gets not only a sound response but also a contingent proprioceptive response. He stops wriggling and turns round to his mother, looks into her face, smiles, places his finger on his lips and then moves it across and places it on hers.
A possible explanation is that Richard has had glue ear, so maybe he has never learned to connect the sounds he makes with the possibility of communication with others. His mother tells me later that she used the approach to calm him when he got upset. Nevertheless, linking a proprioceptive response to the rhythm of a sound is sometimes more effective than trying to respond sound on sound.
Children who have proprioceptive difficulties, are often helped by a programme of vigorous physical inputs. Paul (aged 7) is hypersensitive to sound; he flinches if spoken to in his left ear. He swings on curtains and enjoys swings, that is, activities that give him a jolt. When he arrives at school, he is escorted off the bus into the hall. After Assembly he is taken to his classroom, where he makes for his corner, hugs a cushion and cries. He will not join in any classroom groups or activities.
Assembly is in a noisy hall, this will trigger sensory overload and hurt him if he is hypersensitive to sound, so I suggest Paul is brought into school by a side door and put on a trampoline for ten minutes before being taken to his class. For the first time he goes and sits with the others in Circle Time.
Giving Paul a regular jolt helps him focus on an activity that has meaning for him. When he gets off the trampoline, the jolt perseverates in his brain after the actual jump has stopped, continuing to give him a sensation that calms him after the stimulus has ended. Research has shown that eventually this perseverent jolt will fade, and needs topping up. So he needs to be put back on the trampoline three or four times a day.
HOW “FEELING” IS SENSED
Discussion of how we sense ‘Feeling’ is complicated, since we use the word indiscriminately to cover a whole range of perceptions from sensations to emotions. Recent interest has focused on our sense of interoception; how we feel such sensations as pain, arousal, fear, the need to urinate, hunger, etc. How do we move from bodily sensations to feeling an integrated picture of the state of our bodies?
Our brain-body is concerned to keep itself working as effectively as possible. To this end, there is an afferent flow of sensation messages from the body organs to the insula in the brain, building a constantly updated map of the ‘state of play’ in the body. Interested in maintaining homeostasis, the insula works in close conjunction with the anterior cingulate cortex, which decides what action should be taken. It is from the insula that we derive our sense of self.
‘The insula develops an awareness of cognitive, affective, and physical state, generated by the integrative functions of the insula and then re-represented in anterior cingulate cortex as a basis for the selection of - and preparation for - responses to inner or outer events’.
If the insula is basically a map room, constantly updating the status of the body and telling us both in the physical and emotional senses how we feel, the anterior cingulate cortex is where the brain decides what action to take.
The point of this in relation to autism is that in some autistic people, there is a disconnect in this afferent pathway: they are not receiving – or being overwhelmed by what they describe as, ‘a tsunami of emotion’. Either way, the picture built in the brain is misinforming them as to their physical or emotional status. So the individual has no clear picture of what is happening – and may be extremely defensive as a consequence.
Proprioceptive difficulties are often linked with problems with balance and especially with boundaries, when the child does not know where they are in space. They will want to wear tight clothing, especially when they are outside. It is difficult for those of us who know exactly what our boundaries are, to understand that children with this problem may not be able to feel where they stop and others begin, ‘what is me and what is not me’. Not only are they not getting a clear picture of themselves but they may not be able to distinguish what is ‘me’ and ‘not me’. They will say, I don’t know if this thing in front of me is my hand or yours’. And, ‘I sort of merge into other people’.
These children, and adults, are often helped by the provision of an artificial boundary such as weighted clothes which define the body boundary. In particular, a squease vest is a gilet with air pockets that can be worn beneath a shirt or pullover and tightened with velcro, or pumped up to the required pressure. Vibration can also help a child define their bodies. Occasionally I have come across an autistic person who feels invaded if people come near and lash out, but will communicate happily by tapping on a window. This person needs an artificial boundary, such as a plastic see-through door, whereby they can cross-check on a faulty visual perception with a physical sensation.
Autistic children can also be hypersensitive to smells, taste and temperature, but the most frequent distortions are those triggered by light, sound and interference with proprioceptive and interoceptive messages to the brain telling the child what they are doing. Addressing these deficits goes a long way to reducing stress and allows the child to relax and relate to their environment and to people.
In some children, overactivity of the sympathetic nervous system is triggered by emotional overload; any form of emotional warmth leaves them feeling as if they are drowning in a tsunami of pain, ‘I feel as if I am being attacked and my body responds as if this is so’. In this case it is important to avoid praise and personal warmth, even to the point of using indirect speech.
Finally, there are children who lose their sense of self, a sense of who they are. This arises from difficulties with processing incoming messages but also as a result of being told that their negative feelings are not real, or socially unacceptable.
A boy describes how he was taken to see the psychiatrist because he jumped all the time. She told him he was never to jump again when he left the room. A compliant child, he never jumped again but says that at that moment, ‘he lost his sense of self’. And incidentally, his repetitive behaviours reappeared in a different form.
Where children are verbal, it is quite common to hear two different voices: one which is bright and cheerful, and the other, expressing negative thoughts. What we have is, on the one hand, the socially acceptable language they have been taught and, on the other, how they feel, for example, ‘I want to hit you’. The normal response is to reject their inappropriate feelings, ‘You can’t say that’, but in doing so we are telling them that how they feel does not matter. If they accept this their sense of self is undermined. It is absolutely essential that we accept their negative feelings. The best way to do this is to respond, ‘You must feel as if you want to hit me’. When the feeling is acknowledged as real, they relax immediately and most often will say, ‘Oh yes I do’ but the pressure is gone. In order to be affective it is essential to base the reply using the identical phrase that they initially used, even if this involves swearing. The brain needs to recognise the phrasing and rhythm.
If there is contingent sensory overload, a child may be too distressed to respond to our using their body language to communicate. The advantage of attending to sensory deficits alongside the use of body language to communicate, is that the intensity of our focus on the child’s facial expression and body posture makes it easy to pick up when they flinch - and hence to locate the sensory deficits. If a child blinks or hides their eyes or squints when they look into bright light there is clearly a problem with hypersensitivity.
Rather than being a problem with over or under connectivity in the brain, sometimes messages are sent to the wrong processing area, so for example, taste may be interpreted as shape – salty as triangles. Iris Johannsson tells us that when she was little, she loved to bite babies. This apparently bizarre behaviour arose because she was synaesthetic; in her brain, sound went to the visual processing circuits and was interpreted as beautiful streamers of light. The more the babies yelled and the more her mother shouted at her, the better the aurora effect: an extreme example of the difference in sensory perception between those who are autistic and those who are not. We just do not have the same experience of sensory reality. The problem is that those of us who are not autistic make behavioural judgements and base our coping strategies on our own sensory experience and not on that of the child struggling to make sense of the world round them.
We cannot tell how able an autistic child is until we have looked at their sensory impairments since, the level of their ability can be masked by the difficulties they have in processing incoming information. Once these are addressed, the level of sensory overload drops and they can clearly be seen to relax.
Hazel, young woman, misdiagnosed as having schizophrenia and hospitalised for five months, has recently received a diagnosis of autism. She is hypersensitive to light, sound and emotional warmth and has a poor sense of the boundaries of her body, all of which had been overlooked previously. She now makes use of headphones, tinted lenses and a squease vest. Her ability to communicate has improved enormously. Whereas before, she found it difficult to communicate directly, she now chats with confidence and is about to start on her A-level course.
Hazel is at one end of the intellectual ability scale; at the other end were three children I was asked to see at a Respite Centre, none of whom was able to use speech and with whom the staff found it difficult to make any sort of contact. One aimlessly flicked a stiff plastic flapper so that it made a clicking noise. I hit my book against my walking stick, at first using the same rhythm as he was and then altering the rhythm. He began to smile and engage, waiting for my reply. The second child had a pile of ‘glue sticks’ which he was dropping into a can so that it made a noise. He would not allow me to use any of his sticks, so I fluttered my fingers in the rhythm of the noise and made a sound suggestive of his sounds at the same time. Almost immediately he started to engage, smiling and referring back to me and to his support worker, looking from one to the other to see if we were both engaged.
The third child liked to stay outside away from the other children and bounce on the trampoline. I asked his support worker if she would try bouncing with him and was told, if she got on the trampoline with him, he would run away. I suggested that since he was apparently nervous of people, she might try sitting on the edge and bouncing her feet up and down to his rhythm. When she, he came over at once and put his arms out to her and they bounced up and down together. (Sometimes we forget that if we are standing over children, we are much larger than they are.)
What the brain is looking for are signals that it recognises so they can latch on to something that has meaning for them. In a world where their sensory processing was behaving like a kaleidoscope where the pattern never settles, these three children responded immediately to feedback of rhythms their act brains recognised.
Put simply, the brain works more effectively if we can reduce the child’s anxiety; for an autistic child who is able, this may be enough to enable them to cope with environment we share. For example, even the less able may be able to copy hand movements and generalise if the environmental demands are reduced. But this may not be enough for a child whose brain is more severely damaged; we need to use a different approach.
AUGMENTED MOTHERING/INTENSIVE INTERACTION
Introduced by the psychologist Geraint Ephraim under the name, “Augmented Mothering”, this technique relies on the fact that, autistic or not, we can tune in to how each other feels by our responses to the way they make their initiatives. Renamed “Intensive Interaction” by Nind and Hewett, this approach uses a child’s own body language to communicate with them. In my experience, it is not so much what they are doing but how they do it, which reflects their affective state. As they try to cut out sensory overload, they tense up and the voice gets louder. They may change colour and they generally become more distressed. We need to empathise with how they feel and echo their distress in our responses. We can show them we share their pleasure.
While we are still in the womb we tune into our mother’s heartbeat; before sound comes on line, it is rhythm through pressure waves in the amniotic fluid that is the first sensory awareness we have of the world outside ourselves - and it remains fundamental to our perception of the state of ‘other than ourselves’. Picking up on the rhythm of the child’s sounds and actions is an important part of our interventions, since it is the rhythm of an activity that we use as an indicator of the affective state of an exchange. So, in learning our conversation partner’s language, we need to immerse ourselves, not only in their sounds and movements but also in the rhythm of these.
Some autistic children have retreated so far into their own worlds that they are effectively, people-blind. Ros Blackburn, an autistic speaker tells us, she might as well be speaking to a row of chairs. What we are trying to do is to give them the idea that we are ‘user-friendly’, that relationship can feel good so that, as a teacher said, ‘they want to be with people’.
Provided we stick to the signals that have meaning for them, the ones that are hard-wired into their body language, we can communicate quite flexibly; we might answer a sound with a gesture or tap out its rhythm. And we can kick- start a conversation; we don’t have to wait for them to begin, provided we stay within the parameters of their language.
Every time we send our partners an intelligible signal we are not only confirming what they are doing but also what and who they are, in the sense that we confirm that the receiving organ, the eyes or ears or pressure sensors, nose or taste buds, are in working order, that they themselves exist. This is extremely important since many autistic adults complain that they have lost their sense of self. ‘I don’t know who I am.’ On the one hand, this is because they are not getting the necessary physical and confirmatory signals from the world outside since their sensory intake is scrambled. But on the other hand, when they do express how they feel, their negative feelings are rejected.
In practice, even if we have managed to meet a child or adult’s sensory impairments and they do turn out to have useful speech, I still respond to any non-verbal cues that may intersperse their utterances. For example, Donna Williams, a brilliant writer who died in 2017 and who taught us so much through her sensitive explorations of her autism, sometimes made a particular sound, ‘n-nn-n-nn’ in her sentences. She said it was so hard to keep up with speech processing, that when she heard one of the sounds of her own body language ‘it was like being thrown a lifebelt in a stormy sea’.
I also use mime to support speech. A young woman in a day centre sits on the floor all day and fiddles with her belt. In the afternoon, her support team try to take her for a walk. She gets as far as the door and hangs on to the frame, crying and resisting any attempts to get her outside. It makes no difference when I point to her, myself and the door as I say, ‘You and I are going out for a walk’. However, when I point to the floor by her feet and say, ‘You and I are going out for a walk and then we are coming back here again’, she gets up at once and off we go. Since the world outside is ill-defined, she needs visual prompt to tell her where she is coming back to.
To summarise, children find it hard to communicate if the brain is overwhelmed by random signals. The aim of Responsive Communication is to address deficits in both Functional Communication and Emotional Engagement. On the one hand, reducing sensory deficits where they occur, enhances Functional Communication, while interacting through body language (Intensive Interaction) establishes Emotional Engagement. Used in conjunction with each other, the two approaches are complementary, promoting understanding and trust. As our partner’s stress levels come down, they are more able to communicate at a level commensurate with their underlying level of ability. Whether by cutting down on intrusive hyper- and hypo- sensitivities, or by using signals that the brain easily recognizes, our conversation partners are no longer flooded by anxiety, and the brain is more easily able to process incoming information.
The autistic spectrum has many origins and covers such an immense variety of conditions, depending on just how the neuronal connections have lined up – or failed to do so. Intellectual ability also varies enormously (although as we have seen, we cannot assess this until we address the sensory deficits). So the question arises, how widely can this approach known as Responsive Communication be applied to autistic people?
To begin with, the sensory deficits apply across the spectrum; virtually all autistic people have them in one form another. Responsive Communication looks for causes. It is imperative that those of us who support autistic people keep up with the rapidly advancing research throwing new light on our understanding of the nature of autism.
Rather than using behavioural manipulation to achieve social conformity, if necessary supported by medication, we need to isolate and address the sensory problems faced by an individual by adjusting personal environments. At the root of Responsive Communication is an attitude that seeks to understand the nature of autism and the strengths and vulnerability of a particular individual, whatever their cognitive level. Its aim is to bring meaning to a sensorily chaotic world by reducing stress, decreasing signals that increase processing difficulties and increasing those that are easily processed. Reducing anxiety levels allows the brain to process at its personal maximum effectiveness.
1 Intensive Interaction: Using body Language to Communicate http://www.intellectualdisability.info/how-to-guides/articles/intensive-interaction-using-body-language-to-communicate
2 Optimum LED Colour changing Light Bulb. Available at BandM Stores
3 The Scientist »»Daily News ‘Symmetrical Eyes Indicate Dyslexia’ Ruth Williams | October 18, 2017 For those who wish to follow the dyslexia clues, there is new research in http://www.bbc.com/news/health-41666320 which suggests that in the non-dyslexic person asymmetry in spots in the area of the blue cones is leading to dominance of one eye which enables the eye to focus on an image. The dyslexic eye is symmetrical in this respect. Perhaps this might lead the way to an understanding of visual pixilation in autistic visual hypersensitivity?
4 For further information as to a practitioner in your area, contact Tina Yates at info@Irleneast.com
5 Anderson A. Google, Updates on Irlen Research at Cornell University (A simple guide to the affects of colour on brain processing)
6 Fear of Falling, a BBC4 film explaining proprioceptive difficulties (fast forward to 50min. if you don’t want to watch the foot dissection). Brilliant description of proprioception: http://www.bbc.co.uk/iplayer/episode/p01mv2rj/dissected-2-the-incredible-human-foot
7 Craig A. D. (2015) ‘How do you feel? An interoceptive Moment with your Neurobiological Self’, Princeton University Press, Princeton and Oxford
8 Medford N and Critchley H D.’ Conjoint activity of the anterior insula and anterior cingulate cortex: awareness and response. Brain Struct Funct “010 Jun; 214(5-6) 535-549
  https://autismawarenesscentre.com/what-is-interoception-and-how-does-it-impact-autism/
10 Caldwell, P. (2014) ‘The Anger Box’ Chap 12. Confirmation and a sense of Self .ljj Jessica Kingsley Publishers
11 Johansson I. A Different Childhood
12 Caldwell P. ‘Autism and Intensive Interaction’ Training Film, Jessica Kingsley Publishers
13 Damasio A.R. ‘The feeling of What Happens’ Random House
This article was first published on this site in March 2018.