Untypical, page 4
If you’re going to make life easier for the autistic people around you, then gradually allowing us to drop our mask is crucial. However, this comes with a huge proviso: you need to be able to handle whoever lies behind it. You must manage to adapt your expectations of your friend or family member, and show them that their true selves are even more welcome than their masked personas. It’s upsetting how rarely this happens and how often we must retreat back behind the mask, ashamed of ourselves for being so unacceptable even to our own friends.
Meltdowns
There’s a reason beyond simple compassion and empathy for why it’s so important that an autistic person’s needs are met: the result, should we be pushed for too long and too hard. Like any other human being, an autistic person has a threshold – a ceiling of just how much crap they can take before something has to give. I have to emphasise here that there’s nothing unusual about this whatsoever – every single person reading this will have had some kind of emotional outburst when things just got too much to handle. It’s vital that we understand this universal of human experience because it helps to put autistic meltdown into perspective.
For many non-autistic people, autistic meltdown is one of the more notorious aspects of autism. There are many reasons for this, I suppose: first, meltdowns can be quite noticeable, so if you happen to be out shopping and an autistic person is having one (and who can blame them if it’s a particularly busy Saturday), then it’s likely you’ll notice it. Second, they’re a real favourite of non-autistic writers who seek to insert autistic characters into their books and shows. I guess the drama of a meltdown is an attractive feature. It’s therefore likely that any fictional representation of autism will include – probably very prominently – an autistic meltdown of some kind. Third, meltdowns are an aspect of autism that’s fixated upon by non-autistic parents and carers, who often try to gain some sympathy by putting videos on YouTube of their autistic kids having severe meltdowns. Combined, there’s a powerful narrative, constructed mostly by non-autistics, that witnessing autistic meltdown is an absolute nightmare and a constant source of stress and horror.
This may well be the case, my non-autistic friends. But you try actually experiencing one first hand.
I’ve had many meltdowns in my life. Some in public, all of which I remember with an overwhelming yet unreasonable sense of shame, and many in private. For many years I’d no idea what they were, nor what caused them – I assumed they were simply tantrums, and that I had a bad temper or was particularly childish (it’s amazing how cruel a person can be to themselves when trying to explain behaviour caused by a disability they don’t know they have). And this is also how meltdowns can be couched by non-autistic people. There are hundreds if not thousands of autistic people who’ve been accused of throwing tantrums by professionals – doctors and teachers – when what’s actually happening is something else entirely.
Generally speaking, when a neurotypical person hits a ceiling of tolerance and an explosion of emotion occurs, they then receive an awful lot of love and support from the people around them. They recognise that the person has been pushed to their limits because they themselves have similar limits. They know that they wouldn’t be able to take that level of abuse or trauma without snapping, and so they can pour affection and support onto the affected person. We see this frequently when people have experienced serious stress, from divorces to deaths to moving house to being robbed. There are mountains of compassion for these individuals. However, when an autistic person goes through precisely the same process, they often receive none. Why the double standard?
The reason is because the non-autistic onlookers do not recognise the different limits. They see an autistic person melting down in, say, a restaurant, and reason that their surroundings and situations do not warrant such a reaction. They know that they themselves can handle being in a noisy restaurant, so why on earth is that person over there freaking out? The understanding that’s lacking is that autistic people are already, just by being alive in this world, close to their natural limit of stress – their ceiling of tolerance. We exist just beneath that line, all of the time, whereas non-autistics, for the most part, spend their lives way beneath it, barely even aware that there’s a line, until something dreadful happens and you suddenly find yourself crossing it. Our lives are the line, and thus we cross it frequently. This, I believe, is why there’s so rarely any compassion or care shown to autistic people in meltdown: we’re not seen to deserve such a reaction as the situation doesn’t appear to warrant it.
You can feel a meltdown coming. Autistic people often say that we try to get ourselves into a safe, quiet area so we can either decompress at our own speed or have the meltdown in private without interruption and shame afterwards. For there is shame. I’m old enough, and got diagnosed late enough, to have internalised whole heaps of ableism, and I therefore struggle to see my meltdowns as anything other than big adult tantrums. This is how they’ve been presented to me throughout my life, and how I’ve been treated, and it’s very difficult to unlearn all of that. I would never view anyone else’s meltdown as a tantrum, you understand; no, that cruel assessment is reserved only for myself. Shame is a very likely after-effect of a big meltdown: shame that you were seen in such a state, shame at the things you may have said, or done, in the heat of the moment.
Once the meltdown is incoming, it can be headed off: if I’m allowed to calm myself, and have been removed from whatever stimulus has triggered it, I’ve been able to avoid falling into full-blown meltdown with reasonable success. But assuming it isn’t avoided, it will begin. Now, I cannot speak for all autistic people on any topic, but I feel that most strongly here: all autistic people will have a meltdown in different ways, so I will only describe how it feels for myself.
It feels terrifying.
The worst thing is the loss of control. It always seems as if there’s some tiny portion of my brain that’s still working, but it’s pushed harshly into a corner and can do little more than chirrup uselessly while the remainder of my brain explodes like fireworks in unison. I lose the ability to properly communicate. Unlike many autistic people, I can still talk during meltdown to an extent, but my words are muddled and their tone will invariably be more aggressive than I would normally intend. My muscles seem to clench as one in some bizarre rictus, making it difficult to move and even harder to be comfortable. My brain is best described as being static, like we used to see on old analogue televisions when they weren’t tuned in. It’s painful. Focus is impossible. Every part of my body seems to be furiously weighing up the options of ‘fight or flight’ and finds the best result will surely be attempting both simultaneously.
I’ll invariably find myself on the floor, possibly curled up, maybe crying, though not necessarily. I may well be making repetitive movements – stimming – but in a much more intense yet poignantly futile way than normal. Perhaps it helps, but it certainly doesn’t feel like it’s very effective. My body does it anyway. In the worst examples I’ve been known to punch my own legs, scratch my own arms until they’re red raw or even bang my head against things. I write this now dispassionately, an observer aware of how peculiar it may sound that someone who’s very comfortable delivering speeches to large audiences, writing books and teaching students could end up suffering in this way. It’s pretty hard to imagine, if you were to meet me, that this kind of thing happens. But it does, and that’s autism: a hidden disability.
If I’m lucky, all of this will be over within perhaps half an hour. But the hangover will last much longer. Usually, I’ll be feeling the after-effects of meltdown for a day or two – often these are days that can be pretty much written off, as nothing productive can be achieved in such a state. Overall, the average meltdown will ruin a whole day, damage a further two days, damage my relationships with those present (and myself), and leave me physically exhausted, if not actively hurt.
There’s a second type of meltdown that seems to be just as prevalent as the first, and this we call ‘shutdown’. It’s a much more passive and less aggressive form of break, where the autistic person reaches something approaching a state of catatonia for a short period in response to continued exposure to intolerable stress. It can involve a total loss of all communication, as well as an inability to move or even to think. It’s less intense than a meltdown, less intrusive, but actually quite scary in itself. I’ve experienced fewer of these in my lifetime and I’d rather never have to deal with one again.
This is all rather heavy. I understand that. I also understand that many reading this will have experienced meltdowns or shutdowns from an external perspective and know how frightening they are. People often ask me and other autistic adults, ‘What can we do to avoid meltdown in others?’ and my answer is always the same: respect the autistic person’s autonomy. Most of us know what we need to do when meltdown is pelting down the tracks at us – we need to extricate ourselves from the source of stress, immediately, and go somewhere with as little stimuli as possible – a quiet room of some kind, where our stress levels can gradually drop and we can recover. It’s quite simple, but it’s astonishing how rarely this occurs. Too often, non-autistic people are too busy criticising or even punishing the autistic person for whatever perceived terrible behaviour they showed in the early stages of meltdown (for example, leaving the room – an incredibly common one that’s also infuriating because although it’s apparently ‘rude’, it’s also an automatic failsafe to avoid escalation).
Too often autistic people are followed from room to room as they try to escape the stressor that’s assailing them, they’re shouted at and challenged. In these circumstances meltdown is completely unavoidable, and is even actively encouraged by those failing to ‘read the room’. Autistic people must be allowed to self-isolate in order to recuperate. When it comes to autistic children in meltdown, this may not work so well – after all, you cannot simply wander off and let a four-year-old regain composure alone in the middle of a motorway service station.
For children, it can be a good idea not to get too hands-on (unless you know that’s a good method for them), so don’t try to smother them in cuddles; this might be too much and can even exacerbate the meltdown. Instead, give them a metre or so space, don’t tell them off and remind them in gentle tones that it’s OK, and that you’re going to stick around and wait with them while they become calm. It’s a good idea to have a series of calming activities established in advance – a kind of emergency kit – that can be called upon. Anything from encouraging them to breathe deeply, to ‘blowing out their fingers’ (a wonderful practice my daughter learned at nursery school, where they blow on their outstretched fingers like birthday candles, one at a time, until they become more relaxed), to doing a little colouring or singing can work. Then it may simply be a case of reminding them to ‘breathe’ or ‘sing’.
Of course, it’s also possible to reduce the stressors in the first place – identify those things that cause a huge uptick in stress levels and, where possible, remove a need for them or try to find ways of avoiding them. All of the advice about social communication I gave earlier in this chapter can be seen as an example of this, as can – to pluck a random example from the air – not forcing autistic people to do things they frequently literally cannot stand, like making phone calls …
Phone phobia
I’ve always assumed that autistic people were generally happier before the 1870s. Life must have been a balmy, relaxed dream, spending all day safe in the certain knowledge that you were never going to be expected to answer a ringing telephone. Then Alexander Graham Bell sauntered along and shattered this peaceful world with his squalling, intrusive invention. I don’t hold any ill will towards most non-despotic historical figures, but as far as I’m concerned Alex can get right in the bin.
Before you start complaining that the telephone changed the world in a very positive way, enabling family members to stay in touch when far apart and so on, I should state that my hatred of phones and phoning is pretty irrational and is based entirely on a severe phobia of using the things, so I may not be at my most level-headed in this section. But I should also point out that, increasingly, communicating over distance via the written word is overtaking the phone call. Millennials and Generation Z seem to have a distinct and powerful preference to chatting via WhatsApp rather than dialling a number, so it’s not just the autistic community who would happily never pick up a ringing phone again. However, phone-phobia is certainly a common trait among autistic folks, and I’m going to attempt to explain precisely why this is.
First, it’s very important to recognise that for a large number of autistic people phones are not just a source of anxiety and fear. It goes much deeper than that. Autism is a disability – this is something everybody needs to be absolutely clear about. Some autistic people may like to say it isn’t, and to those people I say fair enough – it’s up to the individual after all; but the reality is that to be autistic in this world, the way society works, is to be considerably disabled in a number of ways. Whether this is intrinsic to autism, or just a result of being in a world not designed for autism (the ‘social model’ of disability), is open to fierce debate, and I see strong evidence on both sides. Whatever the case, though, autism is a disability.
Not being able to use a telephone is part of this disability. There’s something about the speed of discourse in a phone conversation that, together with the lack of secondary communication like facial expressions, can make successful communication really difficult. Autistic people often need more time to formulate responses and take in information – it’s just how our brains work – and telephones simply don’t allow for this at all. If you take even an extra second to think while on the phone, the subsequent micro-moment of silence discomfits the person at the other end. You can feel them bristle with irritation or confusion. Phone calls are like entertainment radio: dead air is a crime. And so we’re buffeted into replying as fast as possible, and so we make mistakes or agree to things we shouldn’t have agreed to. Every time I make a phone call, a period of perhaps a day afterwards is spent trying to unpick all the massive fuck-ups I’ve inadvertently caused myself.
But the disability goes way beyond this. Audio hypersensitivity is a part of autistic life, and it will continue to crop up as we meander through this book. Personally, I feel like my ears are out to get me, as they’re so sensitive that they drag my attention from what I’m trying to concentrate on. If I’m reading and there’s a TV playing somewhere within the house, my ears will diligently absorb every word they hear, transmitting this useless information to my brain in envelopes marked ‘Very Urgent’. Whatever I’m reading has no chance of competing with that distraction. On the phone, the conversation I try to focus on is interrupted and blanketed by odd hisses and blips and pops, the tinny echoes of electronic communication. With this chaos in the background, I’ve no chance of fully processing everything that’s said. This isn’t ‘phobia’, nor is it anxiety – it’s a manifestation of disability and as such, understanding and adjustment are absolutely vital. If I allow myself to recognise myself as disabled, then I’m able to see how relevant this is to me. I don’t suffer from something as simple as ‘phone-phobia’ – I’m disabled by a genuine inability to make full use of the technology.
There’s more to say about phones, however. Something that a lot of autistic people report when asked about making phone calls is that the act feels extremely intrusive. When I asked on Twitter, Hazel (@anlasair) noted that ‘I sort of feel like I’m being rude imposing myself onto others … I much prefer to text or email as then the person can just get to it when they’re free rather than a phone call which is demanding attention now.’
This is something I feel in my very bones. I’m extremely sensitive to worries about bothering other people, for any reason. I’d rather die of thirst than ask someone if I can have some water. This is not a form of hyper-passive–aggression – it’s a fear of disturbing other people’s peace. I suppose this stems from knowing how precious my own peace is. Intruding upon a person feels unthinkable to me. Whether it’s my own parents or someone working in a bank’s call centre, I cannot bring myself to intrude upon their lives as strongly as a ringing phone does. It’s just so rude! As a result, when a completely necessary phone call simply has to be made, I’ll invariably spend a prolonged period of time beforehand trying to work out how to minimise my intrusion into their busy lives.
It goes without saying, I think, given that we live in a world where the new technology of constant access to the internet exists, that autistic people would generally appreciate a move away from the horror of telephones. Ironically, it’s modern smartphones that provide the easiest means for this. Once complex bank transactions can be completed by online chat and all doctors’ appointments are arranged by online form completion, then we’ll be talking about a world better suited to autistic people – especially those of us who are non-speaking, for whom telephones constitute an unassailable barrier despite our possessing excellent writing skills. But we’re not there yet. Too often we’re forced to use our least favourite app on our phones – the call function – to talk to someone whose peace we often value more than our own.
Autism and medicine
There’s a big problem in medicine when it comes to autistic people. Western medicine relies a little too much on a uniformity of human experience – it has to in order to function, on account of the costs involved and the number of people who need healthcare (basically all of us). Neurodiversity as a concept tips this up on its head, and muddies the waters considerably. The reality is that human experience is not uniform, not by a long way, and that autistic people in particular experience life, their health and their bodies in ways that may not fit neatly into nurses’ and doctors’ expectations. The problem is that autistic people don’t get the healthcare they need, and this is something that contributes considerably to our lower-than-average life expectancies, often in quite unexpected ways.
