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

by Pete Wharmby

To an uninformed outsider, an autistic person’s inability to move between different focuses can seem a terrible character flaw. Rather than seeing it as a central part of the disability that is ‘autism’, it’s seen as evidence that the individual is a feckless loser, impacting on relationships, employment and more.

After all, if I manage to alienate everyone in my life, then presumably the demands on my time and attention will dry up, yes? As subconscious coping mechanisms go, this really isn’t great.

Treat autistic people’s task-changing as a motorway intersection and I believe you’ll see much happier autistic people.

Perhaps we can start a sea change in how autistic adults are viewed – not as incapable and hopeless, but nor as absolutely fine. We have our spiky skillset, and as such there will be aspects of adult life that we find difficult, despite our successes.

suppose neurotypical people have some kind of built-in filter that enables them to tune in to whatever is the most important sound in the vicinity, but I’m afraid I don’t have that feature.

Group work takes a safe and solitary activity – that of working quietly on one’s own work in the organised space of the classroom – and turns it on its head.

Witnessing the age-old misery of a child wandering around the classroom looking plaintively for a group that would accept them

Once again, we see a trait of autism built around an oversensitivity to a stimulus – in this case rejection or criticism. If autism has a ‘grand unifying theory’, as some suggest (with monotropism being a popular contender), then perhaps it’s this intense sensitivity to all input that lies at its heart.

It simply is, and it squats in my mind like a malevolent goblin, constantly needling me with reminders of how many ways people can hate me.

One autistic individual I spoke to told of an awful situ-tion whereby they were berated at their desk, in front of colleagues, for taking off some days for migraines. They were told that the problem was that they were separate days, rather than a chunk of days together.

Schedules and deadlines are pretty good, really. I struggle to meet them sometimes (executive dysfunction once again rears its head), but I appreciate the idea and they genuinely do help me cope with the world. But my God, if you want an autistic person to abide by a deadline, tell us the truth! Tell us exactly when the very latest time would be that will avoid us being viewed as lazy bums. Don’t imply it. Don’t tell us a time that will actually anger you, should we abide by it. Just be honest and say you expect the job to be done by the time you actually expect it to be done.

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. Put it in an email so that we can scour it for all required information at our leisure.

I’ve always said that if I were ever to meet someone truly important – the King, say, or a president of some kind – then the likelihood of me saying or doing something inappropriate is set at around 100 per cent. I don’t know why, but to me anyone in a position of real authority is still, first and foremost, a person. Thus, I think if I met the King my brain would default to: ‘Here’s a friendly seeming older gentleman – feel free to make jokes about the weather and ask how he’s getting on since the death of his mother.’ I wouldn’t be doing this to appear ‘cool’ or rebellious in some way; more that the concept that it’s somehow wrong to treat such a person as entirely normal wouldn’t occur to me at all. I would have to be reminded, and even then I’d struggle. To put it bluntly, the chances of me accidentally farting in front of the King and then joking about it are limited only by the chances of me ever actually meeting the King.

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.

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

The problem is that my brain is like a busy apartment block where everyone is loud and noisy and horrible, and all of the walls are thin plaster. All of the little nooks and crannies of my mind are assaulted by an endless dirge of noise and activity from other parts of my brain, like trying to sleep while your neighbour – who really loves grime – is having the biggest party of their lives. For short bursts I can keep all of this noise back, bracing myself against it while I try to quietly consider the buds of the cherry tree, but it’s useless, and before long the din and intensity of the rest of my brain bursts through the door with a four pack of beers, screaming. My brain simply never shuts up.

One example I can give is when I’m trying to relax, meditate or be mindful. 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 …’

It’s interesting that this inward-pointing over-analysis can exist concurrently with what we call alexithymia, or a distinct difficulty in recognising our own moods and feelings. Many autistic people report struggling to identify what they’re feeling or why they may be feeling it.

Everybody stims, to some extent. You may well be sitting there – tapping your foot as you read, fiddling with the button on a ballpoint pen – scoffing at the idea that you’d ever do such a thing. I rest my case. It’s a human response to stress or anxiety – a kind of burning off of that restless energy that our bodies seem to generate as a response to worrying about the gas bill. We stride backwards and forwards across the room as we engage in a difficult phone call, we rub our temples when concerned or play with our hair when worried. Because of this universality, each and every neurotypical should be able to empathise with the autistic community on this topic. But generally speaking, they don’t.

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!’

Learning less obvious stims, or only stimming in private, becomes yet another aspect of autistic masking. And we all know how that eventually turns out.

Associate them with the body language that’s unique to autistic culture.

Much is made of how a lot of autistic and ADHD people end up doing the bulk of their work – whatever it may be – just before deadline hits, and I wonder if this is the reason. Often it’s chalked up to procrastination and – well, the number of hours I played on Minecraft tells me that this is certainly a factor. But I think that my inability to clearly understand more distant targets and time scales is involved here too. The procrastination explanation would lead one to expect a period of mad panic and terror in those last weeks; instead, the opposite was true.

for a huge number of autistic people there’s a greater expectation of consistency, of the world abiding by its own rules.

Central to this is an expectation that the world will consistently make sense, that cause and effect will be doggedly adhered to, and that truth and reason will always win out against lies and fantasy. I don’t think many of us handle very well the realisation that the world simply doesn’t work that way.

The problem is that figuring out the rules doesn’t prepare you for how to handle those who decide to cheat.

try my hardest to avoid the ‘autism as superpower’ trope, as it’s very damaging given how difficult life is for autistic people, but in this instance it comes close to the truth. Some people have even argued that this is what autism is for, which is a fascinating if misguided idea. I don’t believe autism is ‘for’ anything; it simply is, and we can choose to either make the best of what it offers the world or not. It is, however, certainly very interesting to wonder whether autistic people might carve a niche for themselves, where this ability to cut through the bull and get to the core of the issue becomes an agent of powerful change in our highly polarised, confusing and precarious world. I hate disability ‘inspiration porn’, but I do sometimes wonder whether autistic people might just save the world …

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).

Ableism has continued to spread and be perpetuated fairly freely, and, despite recent waves of improved awareness and a shifting in values, still appears to be at an endemic stage where it has a large and mostly unacknowledged impact on the lives of disabled people.

Imposter syndrome is common with late-diagnosed autistic people, and it works overtime with me. Although I now know and accept that I’m disabled, I still feel a phony, a faker, a charlatan. This isn’t rational (what in imposter’s syndrome is?) but it is potent, making me feel like I’m over-reacting when responding to ableism, as if it shouldn’t upset me because I’m not really autistic.

Instead, ‘autistic people’ brings our autistic-ness to the fore, highlights it as a key part of our existence, and makes it clear it’s not something we’re ashamed of.

An ongoing problem that causes considerable consternation both in the UK and the USA is the fact that charities and organisations ostensibly set up to help autistic people (or at least their parents …) often have no one who is autistic anywhere in their leadership structure. Our lack of representation in the media is an avoidable problem; lack of autistic representation in the charities that exist to support us is an absolute disaster.

For years we’ve used the term ‘non-verbal’ for autistics who do not use the spoken word to communicate, but it’s clear how completely unhelpful and inaccurate this term is. ‘Non-verbal’ suggests a lack of any kind of language use – a complete inability to put feelings and thoughts into words that can be communicated, but this is far from the truth for many non-speaking autistic people.

As a result, inaccurate assumptions are made about their capabilities and their lives, assumptions that become hard to shake, and that eventually morph into stereotypes and prejudices.

This includes those autistic people who also have learning disabilities, who may be less able to communicate their experiences and needs with the world, and rely on proxies (such as parents or carers) to argue their corner. There has to be concerted effort from the non-autistic world to hear all of these viewpoints, and autistic people who do have a voice must remind them of this fact.

I remember being educated on this very topic one time – rightly so – when I entreated autistic people to take the opportunity to unmask whenever possible, for our own health. A number of Twitter accounts reminded me of the danger of this for many Black autistics, and my eyes were opened to the huge number of areas where advocacy must adapt and see the differences in situations. But as I say, these are not my stories to tell: get online, find the communities and begin to listen.

The 1 to 10 per cent of us that share the planet with you need you to make this effort – at last, after all these years – to accept us into your world, to take this neurotypical world and make it untypical; an untypical world that’s genuinely built for everybody.