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

by Pete Wharmby

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

Imagine if every time someone touched you it hurt, or if every light appeared dazzling and harsh, or if every sound came as a terrifying loud shock: that’s how being autistic can feel, much of the time. When stress levels are higher, the sensitivity seems to get even worse

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.

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.

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,

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.

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.

But if I’m walking with someone, then suddenly my freedom to jink around down whatever street feels nicest is curtailed, and I find myself having to tread paths associated with sadness, stress, pain or worse. It’s no wonder, quite frankly, that I cannot abide walking anywhere with anybody.

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.

autistic burnout can leave an autistic person feeling broken, potentially forever.

I suddenly began to fall apart at work. I was a teacher, and pretty well regarded despite my comical lack of organisation, and I was seen as excellent at working with disenfranchised students. But over a period of maybe six months my ability to handle the strains of work unravelled, I was getting migraines very frequently and was taking too much time off work. Colleagues at work were noticing, which made it even worse, and I was forgetting hugely important things

I ended up taking a long period of sick leave and my standing at work never recovered.

The most obvious difference is the fact that burnout has a definite material effect on our ability to do one particular thing – namely masking. The loss of ability to mask appears to be, for some at least, permanent. This is one of the things that makes it so damaging. As an autistic person’s ability to mask is often so fundamental in their ability to manage life, and especially work, a sudden inability to do it has the potential to rip a life apart.

As far as my brain is concerned, all sounds are of equal importance and it will strain to catch the details in every single utterance that crams itself into my ears.

It’s safe to assume that a large number of autistic children will struggle to use the lunch hour for its main purpose of eating, having been defeated by the crowds around the food queue, and will probably enter the afternoon’s lessons hungry and distracted.

I didn’t know why I didn’t know what was going on. I always listened to the teacher diligently and carefully wrote down the instructions, and I understood them too. But for some reason I just couldn’t follow them. My mind spent most of its processing power on second guessing potential mistakes and mishaps, to the point where the original simple running order of steps was lost in the mire.

the general level of stress that autistic people run at is much, much higher than that of non-autistic people;

never truly intended to go to university – not with any grand idea in mind, at least. I’d no real ambition because it was (and still is) impossible for me to plan that far in advance (my limit is planning for the next five days. Beyond lie chaos and chance). As such, I ended up at university simply by default.

The problem was that I was just so anxious all the time. I was petrified of interacting with customers and constantly bewildered by the various little jobs I had to complete.

I was getting A and B grades at school but couldn’t for the life of me remember how the till worked, which filled me with embarrassment.

When I could remember the jobs I had to complete, I’d be scared of doing them wrong – not because of paranoia, but because I often did get them wrong, e...

If you’re autistic, chances are that there are many things competing to make you feel inadequate and poorly suited for your job. It’s likely you’ll feel socially excluded, for example; as we’ll see shortly, there will also be a constant terror that you’ve misunderstood instructions or orders.

Many autistic people can struggle to retain verbal information – after all, we can be so busy trying to maintain our mask and look you in the eye that you might as well be mowp-mowping like the teacher from Charlie Brown as far as we’re taking anything in.

Neurotypical job interviews are a true obstacle course for autistic candidates, given how much stock is placed in soft social skills like eye contact, small talk, bravado/confidence and a good, appropriate sense of humour; it’s almost as if job interviews are actively stacked against autistic people, when you look at them like that. Often it feels like you’re being interviewed to see how much of a great buddy you’ll be in the office, rather than for your skills and competence at the job, and this doesn’t sit right with me, removing as it does such a vast swathe of neurodivergent candidates.

When given appropriate support, autistic people are just as capable of earning a livelihood as anyone else, and when the vast majority of this support is as easy and cheap as ‘slightly adjusted communication’ or ‘knowing how autism works’, then is there really any excuse?

The fact is, if a person is autistic, there’s a fairly good chance they might be ADHD too (and if you’re feeling expansive, feel free to throw dyslexia, dyscalcula and dyspraxia in there too).

Autism is, for many, a whirlwind of anxiety. Everything I’ve already described to you adds to this maelstrom of nervousness – the constant sensory bombardment, the endless misinterpretation of others and their motives, the continuous issues with our executive function. Stress like this is not healthy, and it must contribute considerably to the sobering statistics around autistic people’s shorter life expectancy. Being able to combat this stress and manage it successfully is therefore absolutely paramount. However, I simply cannot relax.

know how to try to relax. I have, over the years, tried many different strategies to get my head to calm itself down and find a moment’s peace. None of them have worked, or, if they did work for a time, they always stopped working – usually in the most inopportune ways.

The source of my stress was always, and remains, nebulous, unclear, abstract. I believe this is why it’s so hard to combat.

If I do manage to find a moment of quiet in my brain, a corner of peace where the chaos and noise seem far away, it’s only a matter of time before the rest of my brain finds me (I picture it almost scanning for signs of me, like a guard tower with a searchlight in a prison movie) and directs all of that hyperfocus, hyperfixation and chatter back onto me: ‘Oh, there you are, trying to relax. Oh OK, well I can help keep an eye on your breathing – no that was too short, no, look, you’re breathing weirdly now, stop thinking about breathing, OK, keep an eye on your breathing. Hey! What’s going on with your heart there, was that a palpitation? Oh another, keep an eye on your heartbeat …’

I spend too much time worried about the various sensations and throbs and beats and aches that my brain fixes its searchlight upon.

Every small ache becomes a potential problem. Every missed heartbeat is a potential heart attack. Every twinge in my stomach is potential food poisoning, and all because my internal monologue, already irritating when directed outwardly, is now focused internally and yet doesn’t really know what to do with the glut of information it receives.

I’ve found that when I’m really stressed, my mind blanks on those few things that can help me – a shower, listening to music – and having someone gently (don’t forget the PDA!) prod me in that direction can be really useful.

If we’re going to survive, it becomes vital to find some way of controlling this anxiety and stress when none of the standard methods work.

First, there’s the very common issue of neurotypicals recognising an autistic trait as something they themselves do from time to time, and immediately assuming that this means the autistic person is ‘making a mountain out of a molehill’, as it were.

We share, from a position of some vulnerability, one of the challenges we face, only to be met with a blithe statement along the lines of: ‘Well, we all do that, don’t we?’ or ‘I think that’s something everybody does!’ It might be that the intent is to show solidarity, but the effect is always one of diminishing our difficulties, making us feel like we’re moaning about something that other, stronger, better people just get on with. It’s highly damaging to an autistic person’s sense of self-worth, and it happens all the time.

After all, stimming is not all a doom-and-gloom response to terrible things; it can be a joyful, wonderful means of emoting and experiencing life.

If I’m ever asked in interview, ‘Where do you see yourself in five years’ time?’ my answer can only ever be, ‘Hopefully, alive.’

For me, looking into the future is distinctly myopic. I can reliably deal with looking ahead by perhaps a month, at most; a week feels nice and clear, and I’m able to predict and plan my comings and goings over that manageable timescale. Two or three weeks begins to feel murky, in a kind of fog. Anything over four weeks seems so impossible to predict with any level of accuracy that I seem to just give up, leaving it as a huge ‘maybe’ that I’m in no way able to consider in any detail.

As I say on a regular basis, autism is a disability; as a result of that we shouldn’t feel bad for asking for help from those who can do these things.

All modes of transport present a particular set of problems for autistic people. Each manages to set up a series of significant barriers, from the busy noise of coaches to the frightening bustle of airports to the confusing complexity of driving a car.

the ability to move around and get to places is very important, and the autistic community as a whole has real difficulty in managing to maintain this kind of freedom.

Communicative differences in other parts of life transfer into the world of driving, after all, meaning that the methods of communication used by drivers can cause me enormous stress and worry.

These days, if I’ve got to take a bus (thankfully rare because I simply don’t go anywhere), I have to factor in the fact that it’s guaranteed to push me close to meltdown, and plan the rest of my day accordingly.

For autistic people who can struggle to filter sounds, trying to decipher what the announcer is saying against a backdrop of diesel engines revving, children shouting and whistles blowing can be impossible.

I try my hardest to avoid the ‘autism as superpower’ trope, as it’s very damaging given how difficult life is for autistic people,

Autistic people can be vulnerable, for example, to peer pressure, which can lead to very bad outcomes. I believe that autistic boys and young men are, for example, particularly vulnerable to far-right ideologies, given that such ideas are disarmingly simple and based on clear logic (us vs them, scapegoating and so on).