'Coffin-dodgers' and 'crumblies'

- challenging the old age stereotype

A review of Finding You Finding Me, a book by Phoebe Caldwell

Taken from Times OnlineMay 4, 2010How to communicate with autistic childrenThey seemed locked in a world of their own. How to use sympathetic body language to help them engage with the outside worldPhoebe CaldwellRobbie, who is autistic, is eight years old. He used to talk to his mother but he has become increasingly isolated. When he is difficult at school, he is made to sit on the naughty chair. It gets to the stage where if anyone says anything that distresses him, he will go there of his own accord, holding himself by the ear. He then hits himself and screams inconsolably. A number of interventions have been tried to help him, to no avail. It is only when his mother tries answering his sounds - using low and soft tones - that he quietens down. Then within a few weeks, he is talking to his mother again. What is happening here?With one child in 97 born on the autistic spectrum many of us nowadays will have lives touched by the condition - if not directly we will know someone who knows someone ... Just like the rest of us, children with autism will possess all levels of skills or disability, few will have exceptional talent. Because of their autism, many will require support throughout their lives.A child or adult with serious autism is often seen as unresponsive, "living in their own little world" and as having occasional or frequent outbursts of apparently unpredictable self-harm or aggression. Parents are desperate to communicate. The first thing they ask is, "When will he/she talk?"So how can we get in touch with people who are totally absorbed in repetitive behaviours? Why do these children sit in a corner flapping their hands, or screaming and biting themselves? How can we help them feel at home in the world we share?Before we can communicate, we need to reflect on what it is like to be autistic. The problem lies in how incoming information is processed. Although the eyes and ears of those on the autistic spectrum may function normally, they have difficulty organising the information they receive and putting it into context. This is particularly marked with speech.The brain also finds it difficult to switch off, so a sound may continue in the brain long after its source has discontinued. It is as if you are living in a turning kaleidoscope where the pattern never settles. They are easily sensorily overloaded and when this happens sounds boom and shut down, visual images swirl and break up. Balance swirls. Internal sensations may result in feeling that they are being attacked, triggering the body's self- defence system. It is said that that the brain is like a dial-up modem instead of a cable modem - when it is fed too much data it crashes. Added to all this, the brain may not be getting strong enough messages from the muscles and joints, so autistic children may have little idea of what they are doing. All this can be extremely frightening and painful.To escape this sensory chaos, children and adults with autism focus on physical sensations, such as finger scratching, hand flapping, flicking switches, tearing paper - on sounds such as their own breathing or on a particular DVD. These predictable fixations allow them to exclude those stimuli that overload the brain. In all the chaos, they find coherence: now they do know what they are doing.This sensory confusion can be bypassed by using their body language to communicate instead of words, an approach introduced by the psychologist, Geraint Ephraim in the 1980s, and eventually named Intensive Interaction. Ephraim was my supervisor for four years and from him I learned to look at what my conversation partner was doing - and particularly, how they were doing it. Are he or she calm or getting upset? I learnt to use his or her activity as a language out of which to build affective and empathetic conversations that tuned in to how he or she was feeling, promoting emotional engagement.These conversations are based on early infant-mother interactions, in which the infant initiates a sound or movement, the mother responds and, when the infant feels sufficiently confirmed, it moves on to some other sound or movement. We can use this, looking at what physical feedback our partners are giving and responding accordingly. If they are making a sound, I will answer their sound. While not mimicking or copying it, I will use it as part of my response, perhaps varying the tempo, pitch or intonation. If they are tapping, I will tap back with a slightly different rhythm. Or I may tap back the rhythm of a sound on their shoulder. In practice, one can think of Intensive Interaction as being like jazz, where you extemporise on a theme, building variations. There is increasing academic evidence that using body language to communicate promotes eye contact, the desire to move closer and increased social responsiveness.One of the many problems for people with autism seems to be that they get stuck in the stage of needing a mother or mother figure's confirmation before they can move on. By using language familiar to their brains, we shift attention from their inner closed-off world to a source outside themselves - from solitary self-stimulation to shared activity. In the film Autism and Intensive Interaction (see end of article), we see how children whom I have never met before quickly start to be interested in the world outside and interact with people.To return to the schoolchild Robbie, he is drowning under an avalanche of sensory input that causes him real pain. It is only when he hears sounds that his brain recognises that do not add to his confusion, that he is able to find meaning.Intensive Interaction is easy to learn. In our infancy we have all of us been involved in it and we can all of us adapt to using it. After watching the film of my methods, the mother of an autistic child threw up her hands and said: "I can go home and do this now!" We learn the language from our partners, we do not need to be experts to get a response: all parents of children with autism need to share her confidence.Although Intensive Interaction can be used across the non-verbal levels of disability and not just for autism, I have worked particularly with children and adults on the severe end of the autistic spectrum. It is not a cure, but helps to bring calm and the joy of relationship to their lives. Reducing the sensory overload, enables their brains to work more effectively.
By Olga Craig12:01AM BST 25 Sep 2005Margaret Lambton watched in astonishment as her five-year-old daughter, Harriet, ran down the stairs of their Cambridgeshire home, hand in hand with Geraldine, the little girl's care worker. "When they reached the bottom, Harriet turned around, her face beaming, flung her arms around Geraldine's neck and gave her a huge hug. Her face was glowing, she was so happy," she says."Geraldine was in tears. It was the first hug she had had from Harriet in the two years she had known her. The first time she had touched her or interacted with her. At best, she had only ever tolerated Geraldine. It was a truly wonderful moment."Mrs. Lambton's daughter, who has severe autism, had hitherto lived in a lonely and unhappy private world. She spoke only in baby babble and was terrified in the company of strangers, preferring to hide under a table sucking her thumb.She interacted little, even with her parents and brother. Her behaviour led to daily tantrums and her mother and father, Nigel, an RAF officer, had reluctantly accepted the blunt prognosis of a doctor who, on the day Harriet was diagnosed, told them: "Harriet will never lead an independent life, never go to a mainstream school."Last summer, Mrs. Lambton, who worked as a doctor before Harriet's birth, attended a seminar given by Phoebe Caldwell. Ms. Caldwell has worked for more than three decades with people often thought of as unreachable - those who have profound autism and severe learning disabilities.It led to an extraordinary turnaround. "That day had an enormous impact on the whole family," says Mrs. Lambton, 39. "When we tried Phoebe's technique of Intensive Interaction (II), the reaction from Harriet was astonishing. For the first time, we, her family, were able to engage with her, to enter her world. She had been such an unhappy, troubled little girl. Nigel and I felt that, at last, we were going to have a real relationship with our daughter."The approach Ms. Caldwell employs has enhanced the lives of thousands of autistic children and adults. The condition, which affects more than half-a- million people in Britain - the majority of them male - has a wide spectrum, but all sufferers have a developmental disability that affects the way they communicate with and relate to those around them.Intensive Interaction involves mirroring the autistic person's body language to relieve their stress, which enables their brain to function more effectively. As communication improves, the distressed and difficult-to-manage behaviour displayed by sufferers usually recedes.If, say, an autistic child drums his or her heels, Ms. Caldwell will copy the behaviour. When the child sees that someone speaks his or her "language", the interaction begins. "II sounds too easy. But it works very well," Ms. Caldwell, a biologist and former Rowntree Research Fellow, explains. "It uses the body language of a child or adult to communicate with them. It is based on the infant-mother exchange of 'imitation' which we have all been through - it is the way we learn to communicate."This approach is a liberation for those with autism. It is often the first time the world around them makes sense. We have been so determined to frog march them into our world. Using II, we can enter theirs."Ms. Caldwell's success stories are many. While she concentrates mostly on adults, David Hewett, her colleague, treats children.The approach was pioneered in the 1980s by the late Geraint Ephraim, then the principal psychologist at Harperbury hospital, at Radlett, Hertfordshire. "It is important that people realise this is not a miracle," Ms. Caldwell stresses. "Its aim is to introduce shared activity, something those with autism find difficult. For them, relating to others, even making eye contact, can be distressing."One of Ms. Caldwell's recent patients, Peter, 25, was so profoundly autistic that his family had to pad the walls of his home because he constantly banged his head against them. When Ms. Caldwell visited him, his only utterance was a deep breathing noise.When she began imitating the sound, Peter's breathing got louder and louder. Before long, he was singing. "When I left, the nurse with him carried on using the technique. As she was leaving, she said to him, 'Bye, bye.' He said 'ay, ay', repeating the rhythm of her words. It was the first time he had attempted speech."For the Lambtons, teaching Harriet a few words has been a lengthy process. "Harriet has baby babble but little else," says Mrs. Lambton. "But using II I have created songs from her babble, songs that are essentially in Harriet's own language, and she absolutely loves singing them with me. Now she initiates them and engages with me."When Harriet was born, in May 2000, she was a peaceful and cheerful baby. She progressed normally until she was 15 months old when her parents began noticing a change in her behaviour. "At two, she was terrified of company and the baby talk she had had disappeared. It was impossible to get her to make eye contact."At Harriet's two-year-old development check it was clear that something was seriously wrong: its results, however, shocked her parents. "We were told Harriet had the developmental age of just eight months," says Mrs. Lambton."Our lives changed forever. Geraldine began working with Harriet when she was three, but it was always a difficult relationship. Harriet took a very long time to trust Geraldine and would, at best, merely put up with her. There was never any interaction, it was as though Geraldine didn't exist."After we had been to Phoebe's seminar, Geraldine came home with me. Harriet went to her brother's bedroom to play. As always, she closed the curtains and switched off the light. She liked to do that, playing alone with a torch. Geraldine went into the room and found Harriet lying on the floor, making a kicking sound. She lay down beside her, mirroring her behaviour.Then, when Harriet began stroking the bed, Geraldine stroked the carpet. Within moments, Harriet and she established a rapport. That's when she hugged her for the first time."The Lambtons are under no illusion about their daughter's future: they accept her life will never be normal. "But what II has given all of us is a means of communication with Harriet," says Mrs. Lambton. "Alex, her eight-year-old brother uses it with her, as does her teacher at her special school. The approach has made me understand Harriet better. I realise now she is not simply being awkward at times, but that I need to see things as she does."Before, she was trapped in her own unhappy world. Now she will let me play with her - she trusts me more."Our aim for Harriet is that she should be happy and reach her potential, whatever that may be. II is helping her do that."
Expert's mercy mission for autistic girl who hits herselfBy James Moncur 18 Apr 2008LITTLE April Bremner, the autistic girl who beats herself black and blue, is finally getting the help she needs.Phoebe Caldwell, one of the world's leading experts in child communication, visited seven-year-old April this week after reading the Record's story about her heartbreaking plight.And it is hoped the work she did will lay the foundation for April's mum Samantha to keep on helping her daughter.Last month, we revealed how Samantha had tried everything to get help for her daughter.She even feared that April was striking herself repeatedly about the head because of pain from an underlying undiagnosed medical condition such as a tumour.But she said yesterday that Phoebe's visit had already had an astonishing impact on April. The 75-year-old expert, who has written several books and commands substantial fees, travelled at her own expense to see April at her home in Angus.Single mum Samantha, 36, looked on in wonder as she gently worked with her daughter, trying to unlock the causes of her violent outbursts.By using electric toothbrushes and taking visual and verbal cues from April, Phoebe "tuned in" to her.Samantha said yesterday: "I have never seen anything like it."April was as calm as she has ever been in her life."She was completely absorbed by what Phoebe was doing with her and was as settled as I've ever seen her. Phoebe immediately got on to her level and reacted to April's movement and sounds to communicate with her."It was amazing to watch and was just like flicking on a light switch."She added: "I was very cynical before the visit about how much help Phoebe could give us."But she's an amazing woman who has worked with some very disturbed people. I was touched that she thought enough of April to make the trip up from England to fit us into her busy schedule."She seems to have a sixth sense and has already made a huge difference to April's quality of life."Phoebe has worked for more than 30 years with people often thought of as unreachable - those with profound autism and severe learning disabilities.The approach she employs is called Intensive Interaction or II and it has enhanced the lives of thousands of autistic children and adults.The condition, which affects more than half-a-million people in Britain - the majority of them male - has a wide spectrum but all sufferers have a developmental disability that affects the way they communicate with and relate to those around them.II involves mirroring the autistic person's body language to relieve their stress, which enables their brain to function more effectively.As communication improves, the distressed and difficult to manage behaviour displayed by sufferers usually recedes.Phoebe said: "II sounds too easy. But it works very well."It uses the body language of a child or adult to communicate with them. It is based on the infant-mother exchange of 'imitation' which we have all been through - it is the way we learn to communicate."This approach is a liberation for those with autism. It is often the first time the world around them makes sense. We have been so determined to frogmarch them into our world. Using II, we can enter their world."