I like my life to follow set patterns. I have to be in control, so external disruptions are perceived as threatening and immobilizing. My issue with change is inextricably bound up with my over sensitive sensory system, difficulties directing my attention, difficulties making choices and initiating spontaneous action.
I like to be captain of my own ship with minimal interference from the outside world. Changes that I orchestrate, after a great deal of analysis and rumination, are tolerable. Indeed, when variety is connected with my special interest (collecting new books or trying new recipes), I experience positive energy and excitement. But when other people or society disrupt my life, particularly when the change directly threatens the details of my daily routine or an obsessive interest, I can become very confused and upset. If the change is reasonable and I know exactly what is happening and why, if I have a lot of time to process the change, and if the change is not directly threatening a key area of meaning in my life, I can manage and move forward with the change. But if a key area of meaning is threatened (what I refer to as sacred areas in my life), I am left totally bereft and this can trigger a destructive meltdown and significant ongoing tension.
The coronavirus/covid 19 pandemic was largely a change that I could process because 1) it did not happen overnight, so I had time to process the change, 2) I knew exactly why the subsequent changes to society were happening, and my logical priority was to stay safe, the need to do this being stronger than the anxiety connected with some minor changes to my routine, and 3) the sacred areas of meaning in my life were largely left unchanged. With regard to the latter point, this means my lifestyle was not that disrupted by Covid. The main change in my lifestyle was the alteration in support that I receive from the autism charity, because I no longer could see my support worker face to face, and had to speak to her on the telephone instead. However, this was my choice, not imposed on me, and the logical reason for this was because I did not want to risk catching the disease. In most other areas I could continue as before, eating and sleeping at set times, and following my sacred morning reading and cooking routines. Another change is that I can no longer go inside shops to do my food shopping because of the extreme stress this would cause me, owing to my OCD around disease. My dad currently does my shopping for me. However, although it is frustrating that I now have less control over what food I buy, and food is a sacred part of my life, in other respects the change has been positive because shopping was always a stressful activity in terms of dealing with people and the effort involved in going out, which could feel like preparing for a marathon at times. Even for someone who generally hates change, not all change is negative. Positive change is either something I have chosen to make my life better or more interesting, or a change that is there for a logical reason and has a compensatory positive element with it, as with the shopping example.
The hardest part of dealing with Covid as an autistic person is the uncertainty over the future, and when the disease will be under control. I have no idea when life will go back to normal, and I am not sure how I will cope when the danger has passed. If anything, ending a routine is harder than starting a new one, because I can get fixated on new patterns, even once they outlive their purpose. However, I am getting frustrated with the status quo because it feels claustrophobic being bound up indoors all day – I do go out for a 40 minute walk, but I’m limited to a certain safe area. On one respect I am less over stimulated than before because I’m not being exposed to so much sensory information. But on the other hand I feel that I am becoming even more sensitive to noise and other little changes because of the stress and frustration associated with the uncertainty. I have less coping strategies at my disposal. For example, in the past I might go to the Library for a change of scene (an example of a positive, self chosen change), because it was a quiet environment filled with books, which are a sacred object. Or I might window shop up town, which gave me sensory feedback in a good way, because I’ve discovered that although I’m mostly hypersensitive, I do crave some sensory input as well at times, as long as I am in control and the option of leaving is available to me. Currently I can’t access these coping strategies, and this is frustrating because I do enjoy some self-chosen novelty, and I do have an energetic, adventurous side, although this is heavily repressed beneath my inhibiting anxiety.
However, despite the difficulties, my reading and cooking routines are helping me deal with the big change caused by Covid. My routines help me cope when the world outside is falling apart, although recently they have become increasingly compulsive, as they are the one coping strategy I currently have at my disposal. I have been collecting an enormous variety of books because the amassing of these sacred objects makes me feel more grounded.
I am finding the limbo land as lockdown is eased particularly hard. Society is opening up again, yet the disease is still out there, and people are still wearing masks and other disease references are everywhere, which triggers my OCD. It is easier for me to carry on in my own personal lockdown, the lesser of two evils in terms of anxiety because the rules are clear, but it is hard when the rules around me, in society, have been relaxed. There is no longer a sense of clarity or uniformity of purpose.
I often feel, recently, that I’m constantly in a state of high tension, on hyper alert, and a sense of feeling trapped and cornered by the pandemic. But I am still dealing with this huge, big change far better than I deal with little changes that directly threaten my sacred areas of meaning, particularly if they happen with no warning. An example of this would be if I were reading a book and there was a sudden noise, of uncertain duration. If I can no longer pursue my reading, combined with the sensory pain, my default reaction is some sort of meltdown, involving destruction to my self or objects around me. Now thankfully these days this is rare, but the threat of such a change is a constant source of anxiety. My routines must operate like clockwork. I find it very hard to think of alternatives if my chosen course of sacred action is hindered. Now to some extent this depends on the type of change. When I used to go food shopping and had written down a shopping list, I would allow for the possibility they would not have what I wanted by writing a plan B or even C. I could therefore avert anxiety. But I am less prepared for sudden changes from outside to my sacred reading routine. I have to read in the morning, unless another sacred part of my routine, such as the regular appointments I receive to help with my autism, has been planned in advance. I still find it difficult when I have an appointment at the time I am normally reading, but the fact I have had time to prepare helps me process the alteration. Now you might be thinking, surely if the reading is disrupted, you could just watch a film or go out instead. I know these are alternatives to my reading that I can enjoy. However, the option of doing these alternatives is not available to me at the time I’ve planned to read. It feels wrong to do them during my reading routine. This is part of the reason why I get stressed going to bed, in case I don’t sleep and am too tired to read. I know logically that if I’m too tired, I could just not read and watch a film instead. But this feels incredibly dangerous and scary, because it makes me feel out of control. I worry in case my reading routine will be ruined forever. I am aware I have a tendency to catastrophize, or to think that a bad situation like tiredness will be there for ever and ever. It’s strange; when I sleep well I never think that this situation will be the new status quo, because I’m expecting to be tired again soon. But when I’m tired, I can’t pull myself out of thinking that all control has been lost and I might not ever function again. When I’m wide awake, I also feel stressed because it’s a fluctuation in how I feel, and I anticipate losing the feeling and becoming tired again the next day. It’s too good to last!. It’s like my brain is geared toward the negative over the positive, as I’m always expecting bad things to happen.
The fear of being powerless and losing control for ever and ever, of losing sleep for ever and ever, haunts me every day. I spend a lot of time procrastinating because it’s so hard shifting my attention, but once my attention has been shifted (like turning a rusty gear) , it can hyper focus, as it is doing now!. However, any noise disrupts the focus. Part of the reason why I procrastinate is because of the effort involved in maintaining attention, particularly on non sacred parts of my routine. This is why the afternoons are hardest, a void between my sacred reading routine and my sacred dinner routine. The options are endless: do I write, watch a film, read newspaper articles online etc. Because making a choice is so hard, as well as initiating action and focusing attention on one thing at the expense of another, I tend to spend at least an hour doing nothing other than gormlessly scrolling through twitter.
So to conclude, I need things to be predictable and under control because making choices is incredibly difficult, my attention is so easily distracted by sensory input, and my energy system is so easily depleted by the demands of the world.