In applying for University, I took a different approach to most: I only had one choice. I get quite sentimentally attached when making a decision, to the extent that all other options end up being disregarded, and thinking about my future had already caused me a great deal of anxiety.
I’d applied for English and Creative Writing to study at a University in Caerleon. A few months after I’d got the grades, I received an email: ‘We regret to tell you that the course you applied for is no longer available’
Here’s an example of where I’d set up an expectation in my head, with a ‘what could go wrong attitude’ and felt it crashing down painfully.
They did offer me courses that weren’t too far detached from the one I’d applied for. However, my confidence then was extremely lower than it is today, and for better or worse I did not think myself able to stay in or even commute to Treforest. I do find myself questioning what would have happened if I had taken that route. Through these circumstances you end up developing a glib belief in fate by which you don’t actually believe in pre-determined pathways, but force yourself to see events in your life as predetermined by virtue of thier significance.
I ended up studying a foundation course for a year in Caerleon. During that time I grew my confidence massively, and developed an interest in media and journalism – which I studied in Cardiff for my degree. This decision continues to resound in my life today, and while I do not want to go further than that at this point, I am happy with where I stand right now.
I go back to this story as an example of navigating the unexpected. Its an example of where a massive change in circumstances, forced me to completely recalibrate my plans, and set me on a positive footing for the future – arguably more so than if that had never happened. And although the event caused me great anxiety at the time, it very much determined the path my life would take in numerous ways. This blog post is about navigating those unexpected events, and learning to deal with them mentally and emotionally.
The science behind autistic people dealing with change is far from simple
There are theories to suggest that autistic people can learn about the changeability better than neurotypical people due to thier ability to think from the bottom up, rather than the top down. I’ve been through this before, but the basic premise behind this idea is that most people make judgements based on quickly computing past experiences, while a bottom up approach utilities detail first. This goes some way to explaining why some autistic people excel in the arts or data, yet are less adept at making quick, fast decisions based off of incomplete information about the precise subject matter. So the theory goes, the lack of expectation about how things ‘should’ work out, alters the way autistic people think about changes in thier circumstances.
Indeed ‘magical world’ theory, as its been titled proposes that autism’s most notable traits are manifestations of a lack of ability to predict ‘what happens next’. The name of the theory refers to the slight of hand which allows for the element of surprise to take place. Its also quite appropriate in that as a child, I’d often imagine magic in every element of the world, again owing to how my creative side allowed me to see the world differently.
However, heres the issue. The theory argues that the bottom-up approach to thinking is of great benefit to autistic people, in that it allows them to soak in and understand detail, going on to say that the same way of thinking underpins the way autistic people communicate, the hyper sensory way we physically and emotionally perceive the world, and – if you’ll bear with me while this blog gets confusing – our difficulty in accepting changes.
So, I bet at this point you’re probably thinking ‘hang on, so are autistic people good at adapting to changes or aren’t they’. I guess the first answer would be that no two autistic people alike. More than that though, there are lots of different types of change, and where different autistic people draw the line will depend on them. My dad who I see most weekends has a dog that’s by no means quiet. One weekend, Samuel Peeps for that is what we decided to call him (yes, most of my family is like this), was staying at the house of another relative. It took me about a day to notice, reason being that I was paying attention to my immediate environment, not what I expected that environment to look like. That said, I find large scale changes in my routine very difficult to adapt to.
While something like a change in our immediate environment may go unnoticed, a forced change in the way an autistic person lives thier lives might be incredibly anxiety inducing for them – a routine, we can predict and understand and without that sense of control its possible to feel overwhelming loss and powerlessness. On another note, normal communication requires a degree of predictive behaviour as it involves gauging traits like body language, tone of voice, mannerisms and reacting accordingly – a deficiency in prediction presents a different way of looking at why autistic people may struggle to understand conversational traits. Even the emotional and sensory ‘stimming’ we go through by rocking back and forth, flapping hands, fiddling objects could be interpreted as a way to manage and comprehend the unpredictable sensations and feelings which the world throws at us.
“Our predictive skills are what allow us to fruitfully interact with our environment and interpret observations in the context of what has transpired before. Without these skills, the world is likely to appear chaotic. This seemingly capricious environment induces anxiety, the feeling of a loss of control and, overall, a sense of being overwhelmed. Attempts to interact with the world, or to interpret it, will be devoid of the modulatory effects of prior context”Kjelgaard, Autism as a disorder of prediction in a ‘magical’ world
There’s no guarantee that ‘magical world’ theory is correct as its based more on testimony and observation that on any kind of in depth psychological study. Regardless of that though, it presents an interesting way of looking at the traits in autism, our difficulty in habituating different sensations and traits, and – for the purposes of this blog – adapting to the unexpected.
I started this blog by remarking on my tendency to get fixated on what I’m used to, and making clear the impact that a massive personal change in my circumstance had on me. Part of the reason I was so upset when this happened, is I’d bound so much of my hopes for the future and my expectations up in this one pathway. I didn’t really know how to think of anything outside of that, and didn’t want to. Quite appropriately, considering the course I’d applied for, I had a sort of picture in my head as to what my future would look like and was then asked to completely reevaluate that. There have been numerous cases of that process taking place in my life in different scenarios.
The weeks that followed focussed on talking to careers advisors, support workers, getting pushed this way and that by teachers and lecturers alike. The entire ordeal was incredibly emotionally draining and uncertain. It wasn’t until I spoke to someone I was friendly with who happened to work on applications for the foundation course, that any sense of optimism for the future was restored. During this process I was experiencing something, that I later realised as ‘autistic burnout’.
“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate support. It is characterized by pervasive, long-term exhaustion, loss of function, and reduced tolerance to stimulus”Raymaker et al. Defining Autistic Burnout
The discontent between expectation and ability is what I want to focus on here – I’ve already mentioned how sometimes preconcieved expectations can cloud my judgement, and how a disruption in that facade of order and peace can make my world seem chaotic. In a way, part of the reason I was so happy with the foundation course I ended up studying is due to the fact that it was in the location I had originally set my sights on and contained similar elements. The point though is this process involved cycling through options and making quick decisions and not having the ability to comprehend them. The signs of exhaustion were obvious and I found myself actively seeking solitude in order to just find some time to myself, and to escape from a world which seemed extra noisy and more disconcerting as a result.
This is something that can occur when an autistic person loses touch with a friend, loses thier job, is disappointed by a cancellation of plans, or suffers a major blow to thier routine. Look at the hashtag #Autisticburnout and you will find hundreds of people grappling with cases where circumstances have thrown a spanner into the works of thier expectations, leaving a void of confusion and anxiety. The term has developed its own culture despite the lack of a concrete definition or academic study surrounding the phrase. One thing I will add is that you get major burnouts like the one I’ve described which last a few months and then pockets of burnout which last a few hours to a day and which I experience quite regularly.
Dealing with autistic burnout is another issue, and one I’m still trying to work out for myself. The first piece of advice I’d give is not to overwhelm yourself in response to burnout. Don’t let yourself become further exhausted by trying to find a solution as fast as possible. Allow yourself a degree of retreat by engaging in hobbies and letting yourself temporarily forget about the disruption. Also importantly though, surround yourself in a support network of people who will not try and throw answers at you, but will listen to what you’ve been going through, while letting you express yourself. I personally find something that helps me is learning about myself, why I’m feeling the way I’m feeling and reminding myself that I’m not the only one to experience my emotions. When my thoughts won’t control themselves, I write things down in neat little paragraphs, sketching out routines for myself – making space to consider the solutions if that’s the nature of the problem, otherwise setting out my routine in a way which will allow me to best move on, or keep my mind elsewhere.
An Atypical Perspective…
Autistic people adapt to unexpected changes differently: The common example of this that gets mentioned is a car horn. Personally, one car horn might take me by surprise and make me jump. Others might be more sensitive to noises like that. Overall, while I don’t frequently notice small changes which affect what I’m seeing or hearing, changes to my routine or my environment make me feel a sense of uncertainty and fear. Understanding your personal threshold of dealing with change or the unexpected – or if your part of a support network, understanding another persons – is important as it grants that self awareness of knowing whats causing those feelings which arise from changes to our environment, which then allows us to regulate how we react to them.
Autistic Burnout is real (and distinct from other types of burnout): Burnout is a sensation everyone experiences, usually describing sensations of exhaustion, depression and doubt. This is not to trivialize anyone’s experiences. Burnout in any scenario is a horrible feeling to have. Here I’m specifically referring to the form autistic people experience whereby circumstances contradict or ruin our original expectations, past the threshold we can tolerate, thus leading to feelings of insecurity. These have the potential to ‘disable’ us or send us into spirals of retreat or anxiety, sometimes until a sense of order is resolved. Dealing with autistic burnout will first require more acknowledgement of its existence so more research can be directed towards the concept. More than that though, its important to have those support networks and coping mechanisms in place, especially for when burnout occurs.
Overwhelming environments require a societal and individual response: For those of you that read my last blog post, I noted how current circumstances have made our world less noisy and hectic, exposing how ‘sensory’ the world can be. For individuals its obviously beneficial for us to sometimes switch off when we are experiencing sensory overload, preferably before reaching any sort of burnout. For communities creating those support networks and buddy systems can be really beneficial. On a societal level, it might be worth questioning which elements of our world can we strip back, in order to detract from that sense of sensory bombardment. Roads rearranged to make for a more accessible city centre, less glaring lights and music in every shop, more accessible application forms – these are small changes which can make all the difference, and may help autistic people – and perhaps all of us – live less stressful lives, which will help us cope when we encounter changes in them.