I am so pleased to read and feature in Dr. Phoebe Caldwell’s latest book ‘Responsive Communication’. It is with so much delight that I have produced something that has the potential to benefit many people around the world who suffer from sensory issues, and supports adults and children with autism.
Phoebe has worked with autistic individuals for over 40 years. She has pioneered the development of communication support for people on the autistic spectrum, opening up channels of communication and emotional engagement for thousands of individuals across the UK, who previous experience has been one of social and emotional isolation. Phoebe also works closely with professionals in Denmark, the Netherlands, Russia, Australia and Canada.
Responsive Communication is a term adopted by Phoebe, meaning one to one work with individuals on the autistic spectrum who find communication difficult. Phoebe’s aim is to reduce the inputs that are causing sensory distress. She is employed by the NHS, schools, local authorities and families. She works directly with individuals, and she trains professionals, therapists, managers, practitioners, parents and care-givers.
Phoebe has found some unique paths to achieving deep and meaningful engagement with autistic people, and people with profound and multiple learning disabilities. Phoebe has shown how sensory issues can prevent communication and emotional engagement of autistic individuals with others. She has shown how both hypo- and hyper- sensitivities can contribute to a scrambled sensory input, and how subsequent anxiety results in either hyper-arousal (sometimes seen as meltdowns) or hypo-arousal (sometimes seen as shutdowns). These sensory issues are often unrecognised by professionals, families and observers as they are not routinely part of the experience of those who do not have autism.
Responsive Communication is an excellent publication written by 7 authors. The authors include Hope Lightowler, who was diagnosed with high functioning autism and explains her journey; Elspeth Bradley, a Researcher, Psychiatrist & Psychotherapist who has supported people with autism and intellectual disabilities for 35 years in the UK & Canada; Janet Gurney, a professional trainer for charities and organisations in profound learning difficulties and autism; Jennifer Heath, Occupational Therapist and Sensory Integration Practitioner; Kate Richardson, highly specialist learning and disability Speech and Language Therapist, and co-author of many books on communication and learning difficulties.
In the book, Phoebe’s chapter explains the sensory issues that people with autism struggle with. The sensory issues include:
- Visual processing difficulties (Irlen syndrome/scotopic sensitivity)
- Auditory Processing Difficulties
- Emotional Overload
- Smell and Taste
Autistic People can be over sensitive to feelings, creating pain. Or they can be under-sensitive, meaning they cannot feel anything. Or they can be aware they have a sensation but cannot identify it. Feelings are also subjective, very personal. During Phoebe’s research she came across two autistic adults who told he that when they became upset, or to prevent getting upset, they would scrunch up their toes inside their trainers. This allowed them to give themselves feedback without drawing attention to themselves and their rising anxiety. Phoebe realised they needed a point of meaningful focus, and began to speculate about whether she could enhance their stimulus so they could more easily stay in contact, break their cycle of anxiety and stay connected with their environment. As soon as Phoebe began scrunching her toes up inside her shoes, she realised that providing a textured insole might ‘turn up the volume’ of the stimulus to the point at which they felt more connected and less anxious.
Phoebe contacted me when she came across revsstore.com and I was delighted to be able to support her research. The following are direct excerpts from Chapter 1, outlining the experience of those who have been wearing Revs® Massage Insoles.
Grace – a professional artist friend with autism. She says she has “twitchy toes”. She tells me when she feels herself starting overload, she deliberately wrinkles her toes inside her shoes. The sensation give her something to focus on without being noticeable in public. It is clear she is giving herself a stimulus on which she can focus when her brain processing is becoming confused.
One month after wearing Revs® Textured Massage Insoles, Grace reports the following:
“The best way I can explain the way the insoles work; it’s like the texture of tough stretchy rubber massage my feet (while walking), after a while it then seems to tire out all my nerves and overloaded sensory energy, which then allows my tense muscles and some emotions to relax and become more calmer. Even my feet no longer seem to twitch when I am having a daydream or watching the TV. There are times now I have to take the insoles out, as I am used to working under pressure (like putting up exhibitions or providing talks), I kinda need the adrenaline to push me through tiredness and lack of motivation. I only just realised this is one o my strategies. I wouldn’t advise running in them, as they can cause my feet to get sore. It took me a while to get used to them and see the difference they and, but I can now safely say I wouldn’t go back to wearing shoes without them”.
Hope, the author of Chapter 2 in the book, also tries Revs® Insoles. When she first puts them on she says:
“Before, I knew I was walking but could not feel it, but now I can feel I am walking. The ridged insoles are incredibly helpful. They help to ground me. I can actually feel my feet for once in my shoes. The only time I used to be able to feel my feet was when I was in pain with them. Or if I was wearing new (or uncomfortable), shoes which sometimes meant I would purposely wear these uncomfortable shoes just to get that pressure on my feet. Just so I could feel my feet. I now don’t feel like a floating head like I normally do. Or sometimes my feet felt like jelly. Which not only leads to clumsiness, but feeling weird. I liked my feet to feel things, especially the ground, which is why I didn’t like wearing shoes. I like to not wear shoes, but don’t like not wearing socks, as I don’t like my feet getting mucky. Because with socks on only, you can feel the ground. But with the insoles I can get the feeling I crave. The insoles also help when going into overload. As before when I was getting overloaded I would scrunch up my toes which I now understand was my body trying to grasp onto something and get the much-needed feeling I required. Without this, I would continue to spiral further into overload and panic. But now it almost brings me back to where I am and stops me from getting me overloaded – and helps me to calm down. It also stops overload from occurring in the first place”.
Phoebe highlights the transition Hope experiences by explaining that the change from her experience of feeling that she is disembodied -‘floating head’, to feeling connected with the ground she is standing on. Without this extra input from the insoles, the messages from her feet to her brain telling her what she was doing are not getting through, either because they are too weak, or were drowned out by other signals.
Here is some more positive feedback from other people with autism and sensory issues who tried Revs Massage Insoles as part of this trial:
Richard said he did not expect them to have the effect they did. His gait is much smoother, there is less tiredness in his gait and he has a better sense when he is cycling that his feet are resting on the pedals.
Paul says he has a better stride, a better sense of body connectivity, his posture has improved, he is not blaming his feet down when he walks and his right hemiplegia gas benefitted.
Bridget writes “after a week her brothers’s motivation and health improved and this has been sustained on a remarkable level”.
Phoebe summarises that currently, on the basis of the trial so far, feedback from individuals who are using Revs Textured Massage Insoles has been sufficiently favourable to suggest they are worth trying if the individual is hypo-sensitive to proprioception and particularly those who rub their feet (and possibly hands) in some way to obtain the stimulus they require.
For me, I am delighted that Revs® has been found to offer this therapy that helps people with sensory issues and autism. It is estimated that worldwide 1 in 160 children has an ASD (Autistic Spectrum Disorders) and this statistic is rising*. In the UK there are around 700,000 people on the autism spectrum, that’s more than 1 in 100. If you include their families, autism is a part of daily life for 2.8 million people**. In the USA about 1 in 59 children has been identified with ASD, that is more than 3.5 million Americans. The statistics covers all racial, ethnic, and socioeconomic groups***. For this reason, if Revs helps even a small percentage of this group, it is a great thing.
Revs textured insoles can be used in all different kinds of shoes, so you can wear them with your smart or casual wear, and even, as in Richard’s case, in cycling shoes. Hope advised not to run in them, and I would agree, in general, after long runs you would wear them for post-run recovery benefits, but this is based on the insoles providing acupressure & reflexology health benefits, as opposed to textured insole support for sensory issues. It seems Revs® has a number of uses! Check out the other areas of revsstore.com to find out more on why we would all benefit from wearing Revs & the science and design of Revs.
** Reference 2