Updated: Oct 26
“A lifelong developmental disability which affects how people communicate and interact with the world”.
This is the current definition of autism. I say current, as these things do and have changed. Indeed, autism; how it’s currently known, remains somewhat mystifying to many people generally speaking. Indeed, people know the word “autism” and they may well draw associations with it too. But the experiential aspects, or rather the “what it's like” to be autistic, remains widely unknown to most. With this in mind, here goes. My name is Liam and I'm a neurodivergent adult who likes to write about their experiences as a neurodivergent adult. And today, I'm going to tell you about my own experience of anxiety (and stress). The causes, the experience and the solutions. So keep reading to find out more.
I felt my body tense up as a paralysing wave of tension swept over me. My heart sped up, my tummy swirling round and round, as I felt the energy drain from me. All as I heard the words “Oh, I forgot to mention. You’ll be teaching in a different room today”.
A sense of dread passed over me as I reassessed what I had planned and how everything could now translate into the alternative room I’d be teaching in. That, and the growing sense of time dwindling evermore, as even in the room I had expected to be teaching in, I had a few things to sort before my session began. Something which usually would be ok because, as you may expect, I had an established routine of “readying” the room, which I usually sort “automatically” having done it so many times before.
But now my thoughts seemed fixated on a repeated reassessment of what the alternative room was going to be like and how this could affect the session. Will I have to make further changes? Will what I have planned work in the space I now have? All the larger and finer details had to be reconsidered and reassessed, all the while fighting the paralysing blankness that comes with trying to first accept and then process what I expected was the case, simply no longer being possible. The stress, the tension, the foggy head, the drain of energy, and the now hypersensitivity to most sensory inputs, really aren’t helpful at all in having to swiftly process all of the information and then make changes accordingly.
I seemed to switch into a more objective, logical and reasoned state. This wasn’t a choice I made, but rather a natural inclination (albeit a stereotyped one) that I’ve noticed become very much accentuated in such circumstances. One might consider this largely beneficial to such a circumstance, however, I urge one to recognise that the objective, logical and reasoned mind tends not to indulge feelings, sensitivities, or consider offence much. This, as you may imagine, can make everything much harder, now having to monitor and filter how you come across among everything else. That, and this isn't always very successful. Moreover, in such a circumstance, I think it's fair to say that I just want to get to the point (multiple variables remember), which then further inclines me toward being matter-of-fact. Now, consider too that this isn’t a choice that is made, but rather more akin to a coping mechanism which happens almost automatically.
Moreover, it’s something that only with careful reflection and hindsight, I have recognised. Furthermore, it seems to explain the accentuated “bluntness” often experienced in such circumstances.
I arrive at the alternative room and the influx of more uncalculated variables ensues: the lighting, the temperature, the noises, the smells, the size, and my clothes which feel like some kind of “electrified sandpaper”.
All the while fixating on every part of everything as if it was the only thing; with the challenge of assessing the wider or larger picture becoming increasingly more challenging, as more variables keep getting added.
All of the details of what I had planned and the potential issues anticipated had to now be reassessed and recalculated. This meant reconsidering the overall structure of the session, which meant that the map of how to navigate through the session now seemed at risk too. But paradoxically, I could have done with a map and plan of how the shape, the colours, the large number of items and clutter, but most of all if the projector screen is set up or even working at all. Now imagine that whilst attempting to reassess how one’s original plan may fit into a new space, you are also working to fix a now malfunctioning computer; whilst assigning additional energy and patience into tolerating the influx of sensory inputs, none of which can be filtered out, even slightly. Then add in the constant influx of proprioceptive inputs (or outputs) and the overbearing feeling of my clothes on me, whilst having to work through no longer having the same map or plan. Not to mention, my means of communication: the PowerPoint. You see, to communicate effectively, visual tools are very much at my disposal, as to communicate a concept solely by verbal means can be immensely challenging at times; both for myself and my students, so it works both ways you could say.
Indeed, it’s one thing being able to communicate via verbal means, but it's quite another to be able to confidently and coherently speak without structured guidance as to what is being discussed, explained or exchanged, as well as when to speak or actually when to stop speaking. Immensely challenging at times, I must say.
I kept attempting to reconcile and recalculate how my planned session could fit into the revised space. You see, the challenges aren’t only sensory, social, or communicational alone; or any other “category of experience”. Rather, the "autistic experience" as a whole seems fundamentally different. In that, there remain differences across multiple components of experience, all at once, much of the time. And there are several reasons why one or more of these components of experience might become more challenging than another at any one given time. But in essence, it seems that autism remains experiential, as the multitude of components remains one of many parts of the overall experience of being an autistic person. Yes, it remains useful to look at specific components of experience from an autistic person's perspective, but this surely shouldn’t negate the other components of the experience. As all of the components are linked and so can influence each other; for better or for worse.
A helpful analogy regarding the above-described "self-management" of being autistic as it were, is to consider the feeling you get when a bee lands on you.
Consider then, that the bee hasn’t yet stung you, nor might it ever and yet there remains a constant and perhaps accumulative tension, whilst only being able to focus on that one single bee and everything else becomes secondary. Now for sake of being as clear as possible, let’s equate the one single bee to one variable of experience. For example, sensory, communicational, emotional etc.
Consider then, that experience is always made up of more than one variable. For example, people tend not to experience sensory input alone, without awareness of their thoughts, emotions and what is going on around them. So this suggests to us that there’s more than one "bee" being managed at any one time.
Moreover, if one considers processing and the turning of the cogs (please see Cogs & Cola blog entry), then one may conclude two things.
Firstly that autistic people seem to be more susceptible to the accumulation of "bees" and secondly, autistic people could find “bee management” much more challenging. This means that whilst a non-autistic person might experience a seemingly menial occurrence with little stress or strain; an autistic person could experience the same alleged "menial occurrence", as hugely challenging or indeed as the thing that tips them over the edge.
The difference is that an autistic person is effectively managing levels of anxiety and stress equivalent to having an actual bee (or bees) land and remain on them, and this is before any other variables occur or are considered.
Additionally, when a bee or indeed bees lands on us, we tend to freeze in both body and in many ways mind (due to fixation upon the bee or bees) as the question arises “What do I do?”, but yet no answers seem to come, again due to the fixation upon the bee or bees and not being able to think clearly. Perhaps this might be a useful analogy, highlighting the processing challenges experienced by many autistic people as they experience increasing degrees of anxiety and stress, due to the accumulation of "bees". Perhaps as the day goes along, but sometimes, before they've even left their home or arrived at work, school, college etc.
When sitting in the car on my way to the evening class, I was already managing at least 9 bees. Not literally of course, but remember that each "bee" represents a variable that could, in turn, become causal to increased anxiety and stress, each taking an individual accumulative toll upon processing and functioning.
This is where I think the perceivable "lack of coping mechanisms" bears importance when it comes to autism, anxiety and stress. As it's arguably never ONLY the observable “small thing” (bee) that causes overwhelm, shutdown or meltdown. But rather, that one “small thing” is the tipping point for a person whose anxiety and stress levels are effectively akin to that of a person with multiple literal bees on them. None of which have stung them yet, but all of which could at any point, without any warning. Something which I think it's fair to state would stress any one of us out
rather quickly. Consider too, that the multitude of variables experienced by autistic people could too "sting them" at any point. Namely, they could become overwhelming or unmanageable by the autistic person; especially accumulatively.
Moreover, it surely would become challenging for anyone to effectively process or function with such a multi-faceted influx of variables (bees) present.
This is exactly what experiencing the world can be like for autistic people. Or at least the bee analogy attempts to describe distinct differences in HOW the world is experienced and WHY autistic people could at times be deemed “grumpy”, “moody”, “shy”, “aloof”, “disengaged”, “fixated”, “overly stressed”, “unable to cope”, “overly negative”, “distant”, “awkward”, “stubborn” and “irritable”. How much could anyone tolerate if they are already coping with multiple bees having landed on them? Remember that each “bee” is another “variable of experience” to have to make sense of.
Perhaps it is worth us all asking ourselves how much tolerance we would have for even minute changes to the world if we constantly had to be mindful of even just one single “bee" that remained on us. How about two? Or even three? All at one time. Such is autism.
Perhaps it’s worth considering that autism can mean learning to hide the anxiety and stress related challenges faced from moment to moment for sake of fitting in, to avoid scorn or being deemed inadequate. It's a bit like that one person we all know who tries hard not to be phased by the bee that’s just landed on them. But yet beneath the surface, they are indeed struggling, but also putting a lot of energy into hiding that they are struggling. This could be akin to autistic masking, whereby a considerable amount of energy is constantly put into hiding the “typically autistic” traits. Ask yourself then, these questions:
A. How long could you tolerate a bee on you, before feeling increasing amounts of anxiety, stress or distress?
B. How many and how much of your everyday experiences could you easily tolerate, with a bee on you all of the time?
So it wasn’t ONLY the news of the change of room that caused me to shut off, but rather, I was already managing multiple “bees" at the time of receiving the news about the change of room.
The experience of the world can be a lot, much of the time and a lot of the time it's about simply just knuckling down. But maybe it's not always that simple for everyone in the same way. I try to fit in, mostly because I want to (although recently I'm not so sure), but also because I’ve learnt over the years that a certain amount of scorn or condemnation comes if I don’t at least appear to cope.
Specifically, the following variables (or bees) were already influential to my experience of sitting in the car, on my way to teach the evening class:
1. Social Fatigue caused by being around and navigating the interpersonal dynamics of work colleagues and generally people throughout the day. Sometimes this can be extremely draining, as was the case on this day, due to the higher intensity of interpersonal dynamics.
2. Hindered Processing caused by a collection of little things throughout the day, accentuated from point 1, of which each, in turn, requires specific cognitive focus to work through. Or rather, an intellectualising or reasoning out of what happened, how and why. The “why" aspect is particularly confusing and so particularly draining, as until some kind of sense can be made of the “why”, a distinctive repeating fixation occurs, whereby the word “draining" really doesn’t cut it at all.
3. Heightened Stress & Anxiety caused by self-induced perfectionist pressure orienting toward constant assessment as to whether I’ve “done enough” to get everything sorted for the classes I was taking that evening, against a perceivably ever-narrowing time frame to get things sorted. Specifically, the PowerPoint presentation needed some tweaks, as the program had crashed and had not been saved. This brought on further anxiety and stress as I was now faced with the possibility of essentially being without my visual communication aids.
4. Heightened Proprioception (awareness of my own body and its processes), likely accentuated by point 3. This meant that I was generally much more uncomfortable and disorientated in my own body, with what felt like a distinctive hyper-awareness of my digestive, respiratory and circulatory systems. Both irritating and disorientating.
5. Extreme Fatigue caused by points 1-4, causal to foggy or clouded thinking and huge challenges in “turning the cogs” (see again the Cogs & Cola blog entry) which mostly have now to be forced around.
6. Heightened Sensory Sensitivity causing all smells, touches, lights, or noises to bring about an accumulative fuzziness and sensation of pin pricks all over my head which tended to cause successive intense peaks to that described in point 5.
7. Increased Tension caused by all preceding points. Of particular intensity was the feeling of my clothes on my body, namely against my skin. My whole body was tense and irritable, along with the claustrophobic feeling of the seatbelt across me as well as the smell of the seat belt and car in general, the noise of the radio and the brightness of the daylight through the window.
8. Increased Masking due to all preceding points, it became necessary to keep a very close watch over the degree to which I was successfully masking. Namely, to double down and keep up appearances that everything is fine and that I am wholly unphased. This becomes both tiring and stressful especially with the peaks of anxiety and irritation that arise, alongside managing all preceding points.
So that's at least 8 variables (bees) that I not only had to monitor very closely but also keep in check before anything else was taken into consideration. So then, with this all in mind, perhaps it’s worth considering the amount of “bees'' that we all have to carry around with us. The hypothetical kind of course. As maybe this might instill a default of seeking to understand more about each other. Be we neurotypical or neurodivergent. Be it autism or otherwise.
Of course, there are days when it feels like there are only a few “bees", others when there are far too many and others when the bees can be less imposing. But the key take away remains to be to self-accept, be patient, be kind, and to try and think outside the box.
But it seems the same key point remains, that autism can mean distinct experiential differences, meaning that I tend to wake up each day with the “bees” already there. Which sometimes isn’t such a big deal, but other times can be hugely challenging from the offset. And indeed, it never stops, even on the good days.
Was this blog post helpful and/or informative? Relate to what is described? Sign-up with an email to comment below. In any case, why not copy the link post and share.
Thank you for reading, and it's been a pleasure to have you.
Founder & Director
Liam The Teacher Neurodiversity Services