In August last year I moved house, and it was awful. We spent a few days painting the flat before we moved into it and I would manage about an hour of labour buoyed by the classic hits of Avril Lavigne and then have to dramatically collapse somewhere for another three. I’d been struggling with weird fatigue on and off for a couple of weeks (something I had, in a classic me fashion, put down to my imminent death) and by the time we were actually moving it just felt like everything was too much. I was just about getting by by eating about three times as much each day as I theoretically should have needed to, but I was still so unable to help with the actual lifting of boxes that I had to leave my parents to it and just go somewhere else. My band played a gig at the end of that week and halfway through our last rehearsal I had to lie on the floor for a while because singing was too exhausting: we cut the rehearsal short by an hour. I vividly remember the feeling that looking at things had become unbearably tiring so I kept having to close my eyes not because I was sleepy but just because I couldn’t process visual information anymore. I was getting palpitations and chest pains, and was convinced I had some kind of heart problem.
I won’t bore you with the whole story of what happened from there (I, like all sensible people would, responded to this situation by taking on more responsibility and started a job that… didn’t work out) but what I will tell you is that there is a name for what I was experiencing! It’s called burnout. You might have heard of burnout as a concept applied to people who have worked very hard for a very long time (it’s a word beloved of recently retired teachers and people in caring professions) – it’s essentially what happens when everything has been Too Much for longer than your brain and body can handle so the two of them just sort of… stop working properly. You start sleeping all the time. Going to the shop feels exhausting. You have weird physical symptoms that feel a biiiit like you might be dying. You can’t quite think straight and lose what you’re saying in the middle of saying it.
I had all these classic symptoms of burnout, but other weird stuff was happening to me as well. I couldn’t tolerate bright lights the way I had done in the past (I’d started getting migraines, which didn’t help), and I got spooked so badly by loud noises that sometimes I’d spontaneously burst into tears – it was like my brain couldn’t take in all the information the world was putting out anymore. I was suddenly much more anxious about people thinking I was stupid, which was largely because I felt like I wasn’t doing a good job at talking to them, like I suddenly didn’t really know what to say, and trying to work out what to say was exhausting. Because every interaction I had felt like an awkward conversation with a cab driver, I didn’t want to see anybody or go anywhere and I was emotionally all over the place. I was eating all the time and I couldn’t work out why, and even when that was more under control I was just eating the same things over and over again because other food didn’t feel ‘safe’. I couldn’t engage emotionally with things that felt complicated, so I could barely make decisions and as soon as things didn’t go the way I wanted I would be too overwhelmed to talk about what should happen next. My new job – serving people in a shop – felt like the hardest thing in the world, and I was happiest when I was asked to quietly unpack stock. I’d become intensely sensitive and anxious, somewhat inflexible, and socially avoidant.
It may or not surprise you, from this list of symptoms, that I’m autistic. I spent about a year prior to last September describing myself cagily as ‘probably a bit autistic’ to people close to me (I’ve since learned that’s not actually a good way of looking at autism – whether you ‘show’ more or less, you either are it or you aren’t. It’s like pregnancy that way), but in the midst of all this weirdness it became increasingly clear that 1) I was definitely autistic and 2) I was quite significantly more affected by said autism than I’d realised. I wasn’t burnt out because I’d been working too hard (in fact by most people’s estimations I’d barely been working, having spent the past year in part time study and then the summer doing fuck all) – I was burnt out because I’d spent over two decades existing in a world that didn’t particularly want to accommodate me the way I was, trying not to be the way I was and failing.
Burnout can be triggered in the short term by significant life events like graduations, breakups and house moves (ALL of which I had done in the 18 months before the Awful August), but at its core autistic burnout is the result of an autistic person spending a relatively prolonged period of time doing things or behaving in ways that exhaust them, usually in an effort to pretend at being ‘normal’. This is called masking. Once burnout hits, the mask slips and the person will mysteriously seem much more autistic than they did before, just like me. People socialised female are more likely to mask more successfully than those socialised male, which is one of the reasons why autistic girls tend to get missed in childhood, and subsequently often burn out dramatically in their late teens or early twenties.
Masking behaviours could be anything from making prolonged small talk despite feeling overwhelming anxiety about doing so, to making more eye contact than feels natural or comfortable, to learning not to react to certain sensory inputs that feel really bad. Imagine for a second that many normal things feel bad and uncomfortable, but you do them anyway because those things aren’t supposed to be hard and you have no way of understanding why they would be harder for you than everyone else – upsetting, huh? Often that is the undiagnosed autistic experience: it was certainly mine. For a lot of people masking is something they mostly only do in public, which when times are hard can lead to a kind of binary existence where at work or school an autistic person seems to be coping fairly well, but at home they are constantly melting down as an outlet for the stress of ‘passing’ all day, which might be expressed through self-harm, lack of executive function (ability to perform basic care tasks), disordered eating behaviours, explosive anger, or total shutdown and unresponsiveness. In the latter days of my job when I wasn’t coping well at all, I would mask all day and then as soon as I was out of eyeline of the shop I would be so overwhelmed by the strain of pretending that I wouldn’t be able to even get on my bus and get home, and would end up wandering around town at length in the dark, feeling distant and scared. When I was a teenager I used to get home from school and physically collapse on the floor. Not so much changes, as it turns out.
You may have got this impression but autism isn’t really the way a lot of people understand it. Most people understand autism according to the ‘functioning’ model, whereby autistics are deemed either ‘low-functioning’ (sometimes called severe) or ‘high-functioning’ (sometimes called Asperger’s), on a spectrum that stretches from ‘normal people’ to ‘very autistic’. Theoretically I’m high-functioning, because I don’t have learning difficulties and I can talk articulately and I know how to look like a person the way other people expect a person to look. In reality, though, functioning labels only really measure how autistic a person appears at a casual glance. It’s a ‘high-functioning’ behaviour to complete a full day of work and laugh at your coworkers’ jokes and chit-chat with customers, but it’s a ‘low-functioning’ behaviour to not be able to get on a bus alone – and yet both of these things were totally normal for me. And the job I was supposedly functioning well in gave me ridiculous anxiety and stress. I also absolutely routinely experience ‘catatonic meltdowns’ where I can’t move properly or speak or look at people – where essentially for a short period of time I suddenly look like a quite severely autistic person (usually in the BLOODY supermarket). These happened a lot when I was a teenager (see collapsing on the ground) and they’ve recurred this year. For these kinds of reasons some people have suggested that the autistic spectrum is actually more of an autistic wheel:
From The Art of Autism – the post this comes from is actually really great.
So on this wheel I’d score unusually highly on language and perception, which I’m really very good at in fact partly BECAUSE I’m autistic, and pretty middling on motor skills, since mine are fairly average. Sensory tolerance and executive function, though, I’d get pretty low scores on, because I’m easily overwhelmed by heat/cold/noise/discomfort and I’m generally quite bad at practically taking care of myself. And as I’m sure you can imagine, this wheel doesn’t even nearly represent the incredibly multifaceted experience of being autistic – for instance, I’d score highly on social ability but low on social energy, if those categories were represented. I’m good at talking to people but it’s tiring as all hell and it makes me anxious. In this way it’s hard to neatly categorise people as ‘functioning well’ or ‘functioning badly’ when we function very differently at different times and in different areas of our lives and brains. And in addition, sometimes functioning well is bad for us.
I always hated school (which was ironic because I had a strong reputation as a ‘swot’) because to an unusually-functioning autistic brain school looks like a hellscape: unending social interactions. A lot of pressure to meet expectations but not always great clarity about exactly what those expectations are. Complicated social hierarchies. Crowds. Loud noises and silence, alternately. Incredibly rigid and inflexible rules which don’t allow for self-regulation or time out. Little movement allowed (we autistics love to wriggle, lemme tell you right now). Extended periods of needing to be present and to think straight. Lots of other people’s emotions to absorb, if we have that kind of brain (I do). TEENAGERS, who are the worst sheep in the world – teens en masse love conformity and fear difference. School is literally the worst place you could put a kid who needs to be careful of diminishing their unusually low-capacity ‘battery’, but it is an extremely good way to teach autistic kids to mask, for fear of the consequences of not masking. I learned to stop using long words that everyone else thought were weird and I thought were cool, to talk less, to be less enthusiastic about things, to move less and be more conscious of my body, to tolerate sounds/smells/sensations that made me want to scream, to stop being ‘weird’ in about a thousand different ways. I am still dealing with the damage that dealt me every single day.
Speaking of damage, having a group of people suddenly become your people is quite odd. Until recently I’ve not had any reason to know that by some estimations autistic people have a suicide rate 9 times greater than the average person, or to get angry that the ‘gold standard’ therapy for autistic kids in the USA is widely considered by actual autistic people to be abusive (its inventor used electric shocks and called autistics ‘not people in the psychological sense’). Finding out that you have some ownership of these collective struggles (and that in some ways they relate to your own personal struggles) is deeply upsetting. I’ve rarely felt as angry, or as broken, or as hopeless as I have learning about the very real obstacles and tragedies associated with an autism diagnosis. Autistics come up against overwhelming misunderstanding all the time, people who want to explain our own experience to us, treat us as sick and ‘cure’ us, call us broken and burdensome, dismiss our trauma and pain, wipe us from the face of the earth altogether… it’s not an easy ride. Our life expectancy is significantly lower than average. HOWEVER: there is hope, too. Understanding of autism is changing massively at the moment – my diagnosis is in fact precisely part of a wave of new understanding. And if you’re still reading this, then you’re a part of that wave of new understanding, too (yay!), because the more people who understand things like spectrums and functioning and masking and burnout, the better things will get for us. This is a very current issue, and I remain enormously hopeful that things will improve for the autistic community very soon.