Learning Disability Today
Supporting professionals working in learning disability and autism services

Always driving forwards

While Dr Phoebe Caldwell may be getting older – and facing the challenges that brings – her passion and drive to help people with autism and sensory processing problems through responsive communication remains undimmed. As she tells Dan Parton, retirement is not an option.

It was US comedian George Burns who once said: “You can’t help getting older, but you don’t have to be old.” This little truism seems to fit Dr Phoebe Caldwell very well. Getting older she may be, but she does not fall into the stereotype of ‘old’ one bit.

While physically Dr Caldwell admits she is “not as nimble as I used to be”, her mind is as sharp as ever, as is her desire to help people with autism, sensory problems and challenging behaviour, using a technique known as responsive communication, which she developed.

But it was thoughts about getting older – and, naturally, mortality – that informed Caldwell’s recent book, Driving South to Inverness. It isn’t an autobiography – though it contains elements of that – but more a consideration of mortality as Dr Caldwell documents her move from her beloved house of many years into a sheltered living development in Settle in Yorkshire.

The reason for the move was pragmatic: “I got to the stage where I was beginning to fall over occasionally, so seemed to be a sensible idea to find somewhere pleasant rather than waiting until it was absolutely unavoidable and I would have to go somewhere that you couldn’t call your own,” she says.

But it was a move that was anything but easy – physically or mentally – as the book documents. Firstly, there was the monumental task of going through her possessions, as only a fraction would fit into her new flat. For instance, she disposed of 75 sacks of books alone – and ruptured a vein in her eye in the process.

Rather than thinking of the move as ‘downsizing’, a friend suggested it was more like editing her life. “She said ‘I really hate the phrase downsizing as it means shrinking and throwing away all the things you love’ but editing is quite acceptable. She said: ‘you have been doing it all your life.’ It is a pretty good metaphor.

“But the psychological strain is not so much the moving as the getting old and labelling yourself old – which you do if you go into sheltered housing,” says Dr Caldwell. “They [the owners of the development] had this grand opening and the press came, and they came back with a headline of ‘Dementia home is a first’. I thought it was quite funny but not everybody did – some were quite furious.”

However, more than a year on from the move, Dr Caldwell says she is happy in her flat. “I like this flat, it is a good flat – bar various plumbing problems – and the staff are nice.”

But the label of ‘old’ is still something she rejects. “I am very lucky because I am self-sufficient,” she says. “I have a vast amount of work to do, I am writing all the time and there is so much research coming out and I try to keep up with that. I am very lucky but you do get people [here] who are looking for something to do.

“I am still working and getting out doing interventions. I also do lectures – they are all-day talks so they are quite hard.”

While Dr Caldwell has made some concessions – she has cut back on trips to London and the South of England, for instance – she works almost as hard as before she moved.

Retirement is certainly not on the agenda. “It is very difficult to retire when the need is so desperate,” she says. “The people I’m asked to see are people who support systems are not able to cope with, or able to offer a service that meets their needs. They are extremely distressed; some are self-injuring quite badly or attacking other people. But responsive communication can alleviate that.”

Responsive communication

At the basis of responsive communication is a belief that all challenging behaviours – not a phrase Dr Caldwell likes, as it frames it as a problem, rather than an expression of distress – have a root cause, and if that is found and a solution is found for it, the behaviour will stop. “People have looked at it from the point of view of management ‘how can I control this impossible child’ rather than what is causing their behaviour.”

Often, children with autism or related conditions suffer from sensory overload. “An awful lot are simply unable to cope with sound and visual/light intensity,” she says. “We talk about them going into their own world – actually they are in full retreat from sensory overload. It has been described as agonisingly painful – real physical agony.”

But sometimes relatively simple solutions can make a huge difference. “We try to cut down the amount of processing people with autism have to do,” Caldwell explains. “We have these wonderful BOSE 25 headphones, which were made for helicopter pilots so they could hear each other talk but not the background noise.

“They make an enormous difference. I lent a pair to a little girl recently. Before, she had to sit under a table and barricade it with sofa cushions in order to be able to concentrate. Afterwards, she wrote me a delightful letter saying that before she could hear everything – she couldn’t filter out any noise in the background and couldn’t hear her teacher unless he shouted. But when she put the headphones on she could pick out what was relevant. Her teachers said that within half an hour the level of her work had gone up out of all recognition.

“I have worked with several children recently whose lives have been turned around by these headphones – it doesn’t cure the autism but it does address the physical deficit.

“Coloured lenses can also make a terrific difference. We have scans that show how when people with autism are not wearing the appropriate colours the brain is just full of explosive messages going off all over the place, but when they put the glasses on, they are reduced to what it is like for a child without autism.”

Intensive interaction

Once sensory issues have been addressed, Caldwell moves onto body language with a technique called intensive interaction. “We call the dual approach responsive communication, because it goes much further than intensive interaction, because in our experience you need to address the physical differences as well. The two go hand-in-hand.”

Intensive interaction is not about what body language a person is displaying, but how they are doing it. “The how gives you the emotion – when we look at each other, we are not just getting information from each other but are also watching body language because that tells us how we feel. Different gestures mean different things and all the time we are monitoring that. It is tuning into the emotion of how the person feels which is the bit that really shifts our attention.

“It is not a game where you imitate or mimic someone, it is responding to how they feel and using their utterances or movements as a language and learning that language. You don’t always have to respond to a sound with a sound – you can respond with a movement that will express how that sound feels.

“You can also respond with rhythms. People respond to the rhythm of what they’re doing quite extraordinarily.”

For example, Dr Caldwell worked with a child who had broken her nose and fingers beating her face. “She lived under a blanket and scratched away at it. I did some scratching with her and as soon as she heard something she recognised she pushed the blanket away and played with my fingers and because she was playing with my fingers she was giving herself proprioceptive feeling, and so I used an electric toothbrush with her. An hour later she was smiling.

“That child was almost completely non-verbal but when she went to bed that night her mother said ‘what a lot of noisy children in the street’ and she replied ‘what a noise!’ which is not echolalia, but a comment. The next day she said to her mother ‘I love you.’

“I have had children who have said that when they first started to talk, they did it as a result of the brain being freed up, not of us teaching them. You have to stop people talking to them as that is a terrific processing strain. The speech will come if you empty the brain and then they can process more easily. I have five children where some of their first words were ‘I love you’ to their parents.”

This challenges the perception some hold that people with autism don’t have feelings. “They say ‘it isn’t that we don’t love people, we just can’t deal with the sensory feedback’. Their senses get overloaded.”

No stopping

Results like this – which can transform the lives of autistic children and their families – shows why Caldwell’s work is so important, and why she has no plans to stop, despite “this running battle with physical decline.”

In addition to what was mentioned previously, there is her work with The Caldwell Autism Foundation, which is helping to spread the word about responsive communication and increase the number of practitioners of it. “One feels one is running against the clock, but on the other hand more people know about responsive communication than when we started. The Caldwell Foundation now has seven good practitioners in responsive communication. We have got people who can intervene.”

She has two more books in the pipeline, a schedule of lectures lined up over the next few months, and is still regularly contacted to meet children – showing again that for Dr Caldwell age is just a number.

About the author

Dan Parton is editor of www.learningdisabilitytoday.co.uk and www.mentalhealthtoday.co.uk. He also oversees the mental health and learning disability content on www.careknowledge.com

Driving South to Inverness follows Dr Phoebe Caldwell who, after a lifetime of hard work helping people with profound communication difficulties as a result of autism or other learning disabilities, made the difficult decision to accept the inevitabilities of old age and leave the home she loved to move into sheltered accommodation. This decision and its consequences form the heart of this passionately written memoir.

Driving South to Inverness is available for £9.95 here.

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