Untypical, page 8
We may, for example, struggle to remember to feed ourselves while preparing to give a lecture at some prestigious establishment or we might find self-care like showering absolutely beyond our capacities while being excellent painters or dancers or analysts working on impressive projects. Or we might be totally unable to plan our days to the point of exasperation, and yet our social media accounts are exploding in popularity. Before I explain what impacts all of this have on our lives, let’s explore in a little more depth exactly how one of these gulfs in ability works.
I began this chapter by admitting that I struggled to tie my shoelaces as a teenager. I still do, twenty years later at the age of thirty-eight. It’s actually quite a common problem for autistic people. The reasons for this are varied. First, many autistic people are dyspraxic, a condition that leaves us absolutely at sea when trying to coordinate our hands, arms, legs and feet in any meaningful way. It makes many of us clumsy, prone to falling over, bumping our heads, poking ourselves in the eye, watching thrown balls sail past our flailing hands during PE lessons as the rest of the class laughs. It’s a disconnect between our brain’s intentions and our body’s efforts, and while it may be comical to watch, it’s depressing to experience personally. I can, however, play the guitar and am tolerably good at video games and painting the aforementioned little plastic soldiers – all of which require fine motor skills and tiny careful movements. So clearly dyspraxia isn’t the full story.
A second reason is sensory, or at least it is for me. I hate shoelaces, physically. They drag on the ground, in the grime and the puddles and the dog poo, festering little tails of woe that we then have to carefully tease and manipulate into difficult, intricate patterns with our fingers – the same fingers we use for eating with – and we have to do this repeatedly. As a result I rush the job, desperate to avoid dirtying my hands any further. We already know how sensory issues can impact on an autistic person’s behaviour (or at least we should, as I’ve gone on about it enough), and here that tactile fear leads to avoidance at all costs. Add to that the unpleasant sensation of bending over, knees and back all twisted, possibly augmented by the very common Ehlers–Danlos syndrome (a condition where joints and skin are far more supple and stretchy than the norm, causing considerable pain and discomfort).
Finally, there’s something so dispiriting about knots. It didn’t seem to matter how carefully I tried – they still slipped and slid loose and apart within twenty minutes. It was like I lacked some key piece of information, some vital step that would solve the problem. And actually I was. I’d reached the age of thirty-five before I learned, by way of a Reddit post, of all things (well, I certainly wasn’t about to ask my adult friends for advice on the matter), that you had to pick the direction of your first loop more carefully – it had to be the lace that was tucked under the other in the initial, simple knot. Loop that one first, finish the rest and Bob’s your uncle: a knot that wouldn’t come untied the moment you stood up. I repeat that I was thirty-five. It’s only slight hyperbole to say that this realisation changed my life; laces would now remain tied for more than a few seconds. You’d probably have to stop and think which loop you make first when you tie your shoes, yet you’ve probably done it the same way, without thought, thousands of times in a row.
So of course I hated tying my laces.
Money troubles
If only it were confined to knots. Adulthood is a challenge that many of us autistics find ridiculously difficult. Seriously – the learning curve from the age of eighteen to twenty-one is so steep it’s a wonder that anyone survives it at all. Many autistic people struggle to thrive in adulthood; so many everyday tasks are beyond us, and we lack the support to master them. Another common issue is an inability to manage our finances, often exacerbated by an inability to gain secure employment. Money is pretty important in this world of ours, and generally speaking autistic people find it difficult to secure and keep it, for a variety of reasons. Let’s look at a particularly clear and painful illustration of this problem: free trials on subscriptions.
Let me take you back a few years to illustrate this. I’ve successfully navigated the confusing nightmare of early adulthood in the relatively safe harbour of Loughborough University, have somehow secured my degree, just about, and have opened three credit cards and secured a loan (on top of the standard student loan, of course) to help support myself. A steady income arrives in the form of a job at a fast-food place – at last I can begin accumulating cash rather than bleeding it – and I immediately sign up for a free subscription to a magazine. This in itself is something of an achievement as it involved making a phone call (we’re years away from internet transactions) and sharing my bank details. I’d found my bank card tucked away behind my bed that morning, and was feeling confident I could handle the odd silences and terrifying lack of visual cues in a quick phone chat as I’d nothing else to worry about for the rest of the day. A clear schedule always helps me find the energy needed for these kinds of things. And so, one call later, I was the proud owner of three months’ free subscription to Empire movie magazine.
The three months passed. A year. Two years.
Five years later I finally cancelled that subscription. I hadn’t actually received an issue for over three years, however. By moving house but lacking the wherewithal to tell the subscription company (another phone call, which this time I couldn’t face), I’d gifted someone in Loughborough a long free subscription, paid out of my empty, sad little wallet. I’d fully intended to cancel the subscription after the three months had ended – stick it to the man by claiming my free stuff and then strutting away like a boss, counting my cash. But life, and being autistic, had got square in the way.
I believe I lost something in the region of £300 in this enterprise – enough to buy a small second-hand car in those days. And this is only one example. I ran a poll on Twitter recently, in the spirit of scientific endeavour, to see how many autistic people had fallen foul of the ‘free trial subscription’ trap. Misery loves company, after all. The results were shocking but not unexpected. The vast majority of autistic adults (around 75 per cent of over a thousand votes) had similar anecdotes to tell, and the most common response to ‘How much do you estimate you have lost’ was £300 or more. Now don’t get me wrong, the blame for this lies at the doorstep of those companies who use these tactics: after all, they know what they’re doing and their reliance on people forgetting to cancel preys on the disabled disproportionately, in my opinion. But it’s a very good example of just how granular the – seemingly – inconsequential difficulties faced by autistic people are; I wouldn’t be surprised to find that many neurotypical people had similar stories, but not in the same quantity or so ubiquitously as the autistic community seems to have them.
And why does it happen? The most important reason is our deficit (and for once I’m happy to use this word) in ‘executive function’. This is the set of skills that’s responsible for planning, prioritisation, organisation – all the stuff that makes an adult human work properly. We autistic people have something a little … off in that department. It’s as if someone forgot to instal this particular piece of software, so every other part of our brain is trying to do that work on top of its usual job, like a computer trying to run a new video game without the necessary graphics card. As you can imagine, this isn’t particularly efficient and it goes wrong very frequently.
I often think how tremendous it would be if every autistic person were given a personal assistant to get us through this rigmarole – imagine how much would get done. But instead we find ourselves in a world of unpaid bills and forgotten appointments, losing money, time, important opportunities and even healthcare because a key part of our brain appears to have given up the ghost – we forget (in my case with comical frequency), we lose the energy to tackle them as they build up and up, and ultimately they become so seemingly unmanageable that trying to deal with them is just plain frightening.
A lifetime of messing up in this way can add up more than just financially. You become accustomed to being a bit ‘hopeless’, and it can reach a point where a vicious spiral occurs, a whirlpool of being a little crap at life. This can synchronise with depression (and the cause and effect of that relationship is intriguing, as we shall see later on) to cause real suffering, even homelessness. It can start with missing deadlines at work or a vital meeting with the boss. I remember mine started to really accelerate after I didn’t attend an after-work training session. I totally forgot about it. I’d written it down and had it in my online calendar, but somehow just after each time I checked, something unexpected happened, which essentially wiped my short-term memory.
This happens a lot. I will, for example, be staring at my to-do list, notice that I have a thing I need to do very urgently in the next ten minutes, decide to do it and then bang – someone speaks to me, or I notice an interesting bit of pattern on the wallpaper, or a helicopter flies overhead, and I forget about it immediately, leaving no trace, no ghost of a thought behind. Before I know it it’s six hours later, I’m hopelessly late with the task yet still blissfully ignorant of my failure as it’s completely vanished from my mind. If I’m lucky I’ll discover within a few days that I failed to do the thing. If I’m unlucky I’ll not be told at all and my shameful tardiness will be silently added to the growing list of ‘reasons to fire that guy’.
Executive dysfunction
An accumulation of moments like this can destroy a life, and yet we don’t often hear about executive dysfunction when we’re diagnosed as autistic, and support for it … well, it simply doesn’t exist. In fact, for most autistic adults there’s no post-diagnostic support of any kind. I remember the moment I was confirmed to be autistic (‘Congratulations!’) and the bemusement I felt as I was handed a modest stack of badly photocopied pamphlets titled things like ‘So You’ve Just Found Out You’re Autistic – What Now?’ and ‘Boy, Are You Going to Feel Weird Later On’, all of which advised us to go to our local library to find further information. I got more helpful support the last time I switched home insurance provider (which, of course, was years ago – see above).
I left the hospital, my head swimming with a million unasked questions, completely adrift and confused. Luckily, I was already undergoing counselling for my severe depression at the time, so I at least had some assistance in a safe environment with unpicking what it all meant. But even then I felt as if I’d been dumped in a dark, unmapped forest and struggled to figure out what the hell was going on. The sad truth is the NHS offers no ongoing support for autistic adults unless they have comorbidities like learning disabilities – and even then the support is gatekept harshly and often unfairly.
And so we exist in a state of perpetual potential collapse, often only a few mishaps away from catastrophe. Rates of unemployment, homelessness and suicide among autistic adults are sky high – autistic adults are three times more likely to attempt suicide than the general population* – and I don’t see how anyone can be surprised by this. Practical mishaps, compounded by a sense of being different and therefore not protected by social group dynamics, makes employment extremely precarious for many of us. If we do fall off the employment train, then homelessness becomes a true danger, and I cannot imagine a worse situation as an autistic person than not having a safe, secure refuge to call home. It seems that around 12 per cent of the homeless population in the UK is autistic – way more than even the highest estimated rate of autism generally. This means there are thousands of vulnerable autistic people without a place to call home, without a voice or any kind of representation – and how many of us were waved breezily from our diagnosis appointment with a useless stack of leaflets? As national scandals go, it’s pretty dramatic.
But even if we do manage to hold down a job and stay in our home, we’re still going to live in the physical manifestation of our disorganisation and stress. As such, recurrent life tasks like maintaining that home and – much more importantly – maintaining our health can be beyond many of us.
How many autistics does it take to change a light bulb? The answer is one – we’re not fools – but we’ll spend a year learning how to do things in the dark before we get around to it. Everything that goes wrong in my house becomes a learning adventure as I figure out how to live without it. The thing is, I’m savvy enough to recognise that the chances of me fixing the issue, or worse, having to get it fixed, are extremely low, so it makes good sense to learn how to do without the item or service in question. If the bathroom becomes unusable in some way – the ceiling of the room below begins to bow alarmingly due to unnoticed damp from the shower, for example – then you close off that room like it’s radioactive, seal the door shut and forget about it, and make the best of the remaining bathroom, the one that’s pretty much just a shower cupboard. If the ironing board breaks, just do the ironing on the floor on some towels or, better still, stop ironing altogether. If the oven stops working, stop eating food cooked in an oven and survive on a varied diet of beans and stir-fry.
Obviously, this is no way to live, and ignoring these issues is only going to lead to greater pain in the long run, but what choice do we have? Personally, I’m so limited in terms of energy that making each of these issues right feels impossible, and unless some kind of secondary support appears I’ve little choice but to find the workarounds. And as the house gradually falls apart around me, the spectre of the landlord looms ever larger and the threat of being kicked out shadows me all the time. Imagine this in thousands of struggling households across the country – hundreds of thousands across the world – and those homelessness figures begin to look even more alarming.
The good news is that there’s much that can be done to help autistic people with these challenges. The practical difficulties are harder to resolve, but with some good-quality help with the practicalities and a proper display of empathy from those around us, this needn’t be such a terrible experience. Let’s take a closer look at the lace-tying issue. It’s a problem to do with physical coordination, patience and memory – all of which are things we all occasionally struggle with, autistic or not. The difference is that neurotypical people, generally speaking, find tying shoelaces a walk in the park and have little sympathy for a person who finds them harder.
In fact, an inability to do something that’s associated strongly with nursery school is perceived as being aberrant and somehow wrong – think a stronger version of the mockery of people who can’t catch – and so we autistic people who do struggle get viewed as aberrant and wrong ourselves. This is frustratingly avoidable and eminently fixable, as all it would take would be an increase in patience, empathy and compassion. If your twenty-five-year-old friend can’t tie their shoes, then (if I may be so bold) it’s your incredulity, impatience and askance glances that will only make the situation worse and prevent them from figuring it out in their own time.
Stick to the routine
I’ve built up a strange atmosphere of superstition around a lot of my autistic traits – or at least a simulacrum of superstition, based on something much more prosaic. It’s superstition without the supernatural, a recognition of the patterns and actions in life that lead to the best outcomes, and an earnest desire to repeat them – a ‘stition’, if you will. We’re all familiar with the concept of ‘lucky’ items, for example – the professional athlete having ‘lucky boots’ that they always wear to competitions or a pair of ‘lucky’ pants that are associated with exam success.
As an autistic person, I have a long parade of terrible days and then occasionally days that are, on the whole, not too bad. Of course, I wish to attempt to sustain the ‘not too bad’ run as much as possible (the terrible days are just … well, terrible), and one way to achieve this is to limit those variables, keep doing the same thing, set up a strict and inflexible routine – some of which, to an outsider, would appear as arcane and peculiar as any old superstition.
Much has been written about the need for autistic people to maintain a routine, and how tremendously peeved we can be if the routine is broken. Often, it’s framed as a way to project order on a chaotic world, or manage the enormous inherent stress of our lives, and I won’t disagree – in fact elsewhere in this book these two mechanisms will be explored. But there’s this other reason, one that I’ve been gradually coming to terms with over the last few years: that we seek to replicate success when we experience it, right down to the minutiae. That one good day, probably the first in months, becomes a model to repeat, to perfect if possible. I’ve found I will religiously repeat, as far as I’m able, every single part of a day in order to ensure it stays nice and positive, and doesn’t collapse into the kind of disorder and horror that they all seem to have the potential for.
For example: I like to go for a walk every morning. As someone who inches across the tightrope of autism and ADHD, the need for a bit of regular exercise and energy-burning cannot be overstated, and the walk itself is a guaranteed way to improve my outlook and my day. But it goes further than that. I always begin my walk heading in the same direction – left, as I leave my doorway. To go right would, in my head and gut, be inviting catastrophe in a very similar way to how some would avoid walking under a ladder or placing new shoes on a table. But then things get even more comically convoluted.
Of course, I’ve walked pretty much every street and alleyway of my town – walking is also my go-to treatment for migraine and cluster headaches – so I’ve lots of familiar route options. As I walk, my internal satnav system judges each junction on how it has lately performed: has walking down Orchard Road helped recently, or coincided with positive thoughts or feelings, or been a feature of one of my rare ‘good days’? If so, I’ll invariably take that route. If not, I’ll avoid it like the plague until at some point I associate it with positivity again.
