Untypical: How the world isn’t built for autistic people and what we should all do about it

by Pete Wharmby

And autism is the turmeric – spicier, more noticeable. We’re all, if these overconfident folks are to be believed, spiced up with a little pinch of autism; just enough to make us interesting. Neurotypical people recognise just enough autism or ‘spectrum-y’ in themselves to count themselves ‘in the club’ and free to let loose with their opinions about it.

Because of a lack of proper understanding, people go through life accidentally ignoring, belittling, mocking and hurting actually autistic individuals whose lives and brain architecture can’t be summarised in a thirty-second video online or a mediocre character arc in a sitcom.

How can it be, for example, that implying something in a weird passive–aggressive way is the default technique when trying to get something done for you? How is it in any way possible that one of the best ways to nurture and feed a friendship is to ask another person ‘How are you doing?’ incessantly without properly listening to the answer? How is it that isolation – being left with only one’s thoughts – is a widespread trope for unhappiness, of all things?

But not honestly, of course. Goodness me, the social faux pas were I to respond honestly! No, it’s very important, for reasons that I still don’t truly understand (I’m thirty-nine), to respond with a vaguely positive remark despite the fact I just had a truly awful weekend; likewise, it’s vital not to be too positive, as I would then risk appearing a show-off. This morning, so early, so uncaffeinated, I must figure out an appropriate reply and handle any subsequent enquiries.

The whole thing is so fraught with uncertainty: even if I had spotted the implication, it’s likely I’d then spend a frantic few moments second-guessing myself in a panic – ‘But what if they don’t mean that and I end up looking presumptuous?’

Upon hearing ‘Warm today, isn’t it?’ my natural reaction is to reply with either yes or no, depending on the ambient temperature. This isn’t some infuriating quirk that autistic people have because we’re weird – we’re actually using language as it appears to have been intended. But if I were to reply truthfully with a ‘No, I think it’s quite cold actually,’ I’d immediately be viewed as strange, combative and contrary. All for answering a damned question accurately.

understand that small talk is more about the ‘social’ in ‘social communication’ than the ‘communication’, that content is less important than simply connecting and that there’s even a fear of silence at play too; but despite all this, the likely negative reaction were I to break script seems disproportionate.

If we swing back to the Monday-morning scenario we started with when my colleague asks me how my weekend was while I stand at the photocopier, the expectation is clear. My colleague, with all the goodwill in the world, expects me to respond with something approximating ‘Fine, thanks’. If I do this, the interaction will cease, with him being satisfied by its perceived success while I’m left dissatisfied by the lack of honesty and sincerity I was forced into. Thinking about all the times this kind of interaction has left me feeling stressed and unhappy, it’s the dishonesty that hurts the most. By responding with a ‘Fine, thanks’, I will have lied twice. Once with the ‘fine’ – my weekend was awful and I’m still feeling terrible about it (hence the huge coffee) – and second with the ‘thanks’ – I’ve nothing to be thankful for here: they’ve just forced me to lie about my feelings when I would rather have said nothing at all.

overthinking is what autistic people do, to the point I’m surprised it isn’t among the diagnostic criteria.

It’s important at this juncture to recognise that this level of obsessive over-analysis of a ‘failed’ communication is by no means unusual or a one-off. It’s the standard, or at least it is for me and vast numbers of autistic people who can share similar tales.

All conversations are built on the idea of the back-and-forth, and it seems to be implicitly understood by most people when these moments of shift should occur. But not to me. I’ve no idea when it’s OK for me to take my turn, and so I often find myself sitting very quietly, intently waiting for a pause long enough to represent an unambiguous jumping-off point. By the time I feel the coast is clear for me to interject my opinions on a subject, the conversation has rumbled off into the distance and I’m left nursing an unshared idea.

It always feels to me that the neurotypical world puts arbitrary limits on how passionate one is ‘allowed’ to be about a subject.

trying to cross over the neuro-barrier is very difficult and likely to lead to dissatisfaction on both sides. This is so frequently painted as a problem that lies squarely at the feet of the autistic person, that it has been absorbed as a kind of internalised ableism. It’s too easy to think, in a defeatist, miserable way, that we’re the ones who keep messing up and that we’re the ones, therefore, who need to change (somehow; I’m not convinced that change of this type is possible, and if it is then it certainly isn’t sustainable).

You see, for us there’s something about eye contact that makes it sensitive to the point of serious intimacy. Making eye contact beyond very fleeting micro-moments of direct pupil-to-pupil alignment is something we’d rather do only with those whom we’re comfortable to fart in the presence of.

Many autistic people report unwanted eye contact to be painful in this way – almost like staring at the sun but without the warmth.

We learn to adopt a kind of persona – based on all the things our extremely observant brains have noticed in other people – in order to please those around us so they stop bullying us or causing us harm.

Over time my mask, so separate from myself, began to be as complex as my own personality. I’m loath to suggest that this constructed mask was a total deception or lie, as it wasn’t deliberate or designed to confound. But it was a layer of pretence.

To take stock: masking is a very tiring thing, and we autistic people feel, for the most part, that we’re forced into it by a society who cannot accept us for who we are. It’s impossible to sustain forever, however, so there has to come a point where we drop the mask. And what inevitably happens when we do this? The answer is as predictable as it is depressing: we’re immediately reminded why we put it on in the first place.

There’s a strange catharsis in finding out you’re neurodivergent, a kind of epiphany that there’s a reason why things are the way they are. As a result, we exhale for the first time in years, lean into our autistic traits a little, let our mask slip and … well, we pay the price almost immediately. We learn very quickly that our unmasked selves are simply not welcome and so we hurriedly fix our masks back on – nail them firm for fear of them dislodging – and realise we’ll never be free to be ourselves.

masking to get through the day can wildly misrepresent our needs: who’s going to help us when we’re so adept at appearing to glide painlessly through life? It’s a Catch-22. We mask because we have to, but in doing so we cause ourselves so much harm that we’re never able to unmask.

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.

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

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.

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

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.’

Doctors and nurses rely on people to be able to say that their pain levels are, say, 6 out of 10 and for this to mean something. Trouble is, ask me what my pain levels are and I’ve no idea. This is to some extent yet another example of interoception problems, but it’s also a result of our erstwhile communication issues. I can’t take the question at face value, and I find it impossible to be presumptuous enough to answer with confidence.

If they knew that their autistic patients might be struggling to tell them everything, then perhaps they’d expedite that process by giving us more opportunities to share our other concerns, or have a system whereby we could write down our health worries while arranging our appointments. Why does everything have to involve speaking, after all? Are they not aware that many autistic people are either non-speaking or selectively mute?

Some of us are so expert at this that we manage to hide being autistic even from ourselves.

The truth is that our understanding of autism has developed in leaps and bounds since the early 1990s. We are now, as a society, far more aware of the fact that autistic people exist in all demographics. The revelation that girls and women can be autistic in considerable numbers – imagine! – has increased overall numbers hugely, as has a better awareness of autism in indigenous, Black and other marginalised communities. In such circumstances it would be strange for numbers not to increase.

However, as with all stereotypes, there are nuggets of truth in there – not enough to make it a valid proposition, mind – and it certainly is worth examining them. For all the feeling of emotion going on like a frothy, boiling tumult inside of us, autistic people very frequently don’t show that emotion, nor do we quite know what to do with it.

And then, even if we do manage to show our sympathy for and understanding of your emotional state, we may have no idea what to do in support.

I rely on stock phrases that I know will work: ‘I’m so sorry, that must be so hard.’ Not because I’m grasping at straws for what emotional event is actually occurring – I get that – but because I just don’t know how to respond; I’m lacking that part of the social script, in the same way I’m lacking the rules of ‘small talk’.

Many autistic people report having what we’ve collectively labelled ‘hyper-empathy’ – a kind of extreme set of emotional responses to people and animals in dangerous or upsetting situations.

So, autistic people are as empathetic as they come. Sure, we’ve some interestingly varied and (to a non-autistic person) untypical ways of displaying empathy, if we manage to display it at all, but it’s there for the majority of the autistic population.

Autistic people can get lonely.

Autistic children at school, spending every lunch and breaktime alone hiding in the library or in some undiscovered nook under the stairs, are not seen as sources for concern. ‘It’s OK,’ teachers may reason, ‘they’re autistic.’

We plan and prepare ourselves for this one-on-one meet-up. As part of this we may rehearse greetings, go over relevant topics of conversation, work out where we want to sit (which may involve looking the venue up online and getting some good views of the seating plan – usually it’s best to be tucked away, preferably in an alcove, or with our back to a wall) and so on, our sour experiences of socialising to date being warning enough that this kind of preparation is worth it.

Follow the autistic person’s lead when choosing where to sit or stand. As with so many things I write, I’m aware how entitled and self-absorbed this might sound, but I ask you to try not to view it in a negative light: this isn’t about preferences so much as it’s about needs, and autistic people’s needs are very real and the same as any other disabled person’s requirements.

We often simultaneously want friends, while wanting to get away from them as fast as possible too. We want to go out and spend time with them, but also desperately want to run home and hide in a cupboard to try to recover.

I spend rather too much of my day on Twitter, using social media to socialise. I say this with a completely straight face, as spending time on there, chatting to the people I know (most of whom I’ve never met in person) is effective socialising as far as I’m concerned. We share ideas, jokes, sympathy; we tell our stories, confide and advise. We just do it in writing and while in different rooms, towns, countries, hemispheres. I’ve no idea why this is viewed so disparagingly but it’s obvious that the majority of people see this kind of solely online relationship as a pale imitation of the real thing, where you do all of these things while sitting next to each other. It’s unclear to me how sitting next to one another is viewed as the absolute gold standard of friendship, but if you don’t ensure you’re sitting next to each other soon, you can write that friendship off, pal.

I believe it’s reasonable to suggest that many autistic people have social circles that are primarily, if not entirely, online and that many would say that they have true, genuine friends that they’ve never actually ‘met’.

As far as we can tell, autism is primarily a genetic thing, and is therefore passed down from parent to child. Many autistic people, upon being diagnosed, report that they then realise how autistic their own parent or parents so obviously are. Similarly, when children are diagnosed, often at the behest of their school, it’s very common for one or both of their parents to realise that they themselves have a lot in common and are autistic too (this is so commonplace that I seriously believe that any time a child is diagnosed as autistic, their parents should automatically be invited for a diagnosis themselves, just to speed up the process a little).

We know that the autistic population has strong ties to the LGBTQ+ community, with an emphasis on the TQ+, and I believe this is because our disdain for ‘norms’ means we’re more able to exist the way we should exist, live the lives we ought to live, rather than force ourselves into the narrow definitions

‘One person’s necessary stim can be another person’s sensory hell.’

As someone whose sensory sensitivities are strongly triggered by temperature, humidity, sweat and so on, this is a bit of a problem when it comes to sexual activity – you know, the stuff they leave out of romantic sex scenes in movies, like ‘sleeping in the wet patch’ and so on – and it can cause further issues around libido, as it can be off-putting.

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.

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.

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.

Autistic inertia is an inability to change task or focus – imagine a person totally wrapped up in doing one thing, like reading a book, who finds themselves incapable of putting the book down in order to go and make themselves a nice cup of tea. They want the tea, they’re fine with the theory of making the tea and the book isn’t necessarily gripping, but the required change of focus from the book’s leaves to the tea leaves is just too much. The autistic brain is fully engaged in the one activity, intensely and even all-consumingly, and cannot easily retreat back to regroup and deploy itself on something else.

Because it’s independent of any desire to do the other activity (unlike procrastination, where it’s usually the case that the other activity is avoided because it’s boring or hard), autistic inertia can prevent an autistic person from doing things that may bring them considerable joy.