By Janet Gurney, Director of Training
Social distancing probably wasn’t a phrase that we had used much before this month – and probably not in relation to ourselves. Everyone who has a role in the life of a person with profound learning disability and complex needs will know that feeling distant or disconnected from others is likely to be a common experience for that person. The barriers that communication can present, the misunderstanding of social expectations, society’s discomfort with difference – all of these (and many more) are real issues. Our mission at Us in a Bus is to build bridges of connection to engage with people on their terms – and it would be easy to think that what we are doing is combatting social distancing. But after a few days of ‘lockdown’ I find myself wondering if that is actually what we are doing. I think that what we are doing is trying to understand and respect the need for social distance; when we do that with perception, knowledge and patience, then we are in a position to offer an alternative to isolation.
Lockdown (so far!) hasn’t been uncomfortable for me. I’m safe in a familiar place. I am sharing the space with someone I love. I know what I will be eating for the next few days (it’s not pasta). I can move freely about my space. I know that there will be no unexpected callers. I can choose how to spend my time from the options available to me. So why, every now and again, do I feel a visceral surge of fear? Why am I suddenly finding myself in tears? This feels physical and well as emotional – I feel the emotion in my body at the same time as a thought passing through my head. And this happens when I think about the safety of people who I love but who are not in this space with me, or the safety of untold numbers of people I don’t know, or the uncertainty of everyone’s financial future. I know that I am not alone in this; because of the communication aids at my disposal, and my ability to express myself, I am able to share my experience and listen to that of others. But what am I learning about safety, predictability and the fear of the unknown that might be the everyday, every minute, every second experience of some of the people we support?
Take Joe, a young man with complex autism. From the way he moves, his sounds, his habits, we think he is constantly trying to create for himself the sort of predictability I can achieve for myself by closing my front door. But he doesn’t have control of his front door – because of the level of care and support Joe needs, other people are in his house to provide it. One of them wears an aftershave that reminds him of a very scary incident years ago; Joe doesn’t know whether this incident will recur when the smell recurs. There are other people in the house too, who need the same sort of support. Some of them are noisy, so Joe isn’t in control of the level of noise around him, which makes him anxious as he is very sensitive to unexpected sounds of a certain pitch. Joe has problems processing visual input; at least his own bedroom is visually more predictable than the hallway outside where people are moving about, talking, producing smells and offering him choices! When too much of this happens, maybe Joe experiences a sweeping sensation of fear and distress, which makes his knees feel weak and wobbly and his balance seems off-kilter. It is far safer to stay in his room and rock from foot to foot; when he is doing this he is creating proprioceptive and vestibular certainty. He adds vigorous and rhythmic finger flapping to add an element of control to his visual environment – when he looks at his fingers, they are moving at a speed he is controlling (unlike everything else that seems to be moving in every direction at once).
Joe is doing everything he can to create safety and certainty for himself – and it has the appearance of saying “Go away, keep your distance”. But if we take a leap (based on the accounts of so many people with autism who, unlike Joe, are able to explain their sensations to us) and see what Joe is doing notas a desire to stay isolated from others, but as his tried and tested pattern to mitigate the impact of the sensory processing issues he experiences under the influence of fear of the unknown, well, then we are closer to our own experiences. Yesterday, when I felt fearful and tearful, I mitigated the impact of that by having a stomp round the garden and phoning a friend. So, with our understanding that Intensive Interaction (speaking Joe’s ‘language’) can lower anxiety, coupled with the recognition that we can, with practice and patience, learn how to make ourselves ‘process-able’ we are supporting Joe to explore social space in a way that is safely at his pace. We are not intruding on the distance he wants to keep but throwing a lifeline of social connection that he is able to take hold of and pull us closer – not the other way round. When we respect the distance he needs and try to understand the reasons he seeks it, then Joe can choose to step out of isolation when he wants.