Awareness Without Accommodation

1. Awareness Did and Didn’t Save Us

You'd think that with millions of videos on autism, with autistic creators having spent so much energy and wisdom creating awareness, it would be easier for us to essentially come out of the closet.

It did and didn't.

We're just not there yet. As much as social media may make it seem otherwise, this isn't yet a reality.

2. Coming Out, Again

I came out to my neighbours, many of whom now don't even look at me anymore. You'd think that Berlin, one of the most progressive cities in Germany and Europe, would not have this issue. But it does.

I tell people that in Romania I had to come out of the gay closet and answer wildly inappropriate questions, and in Germany I have to come out as autistic and also answer inappropriate questions, or worse: be told outright that I'm lying, or that I couldn't possibly be autistic to begin with.

So much so that official institutions in Germany have refused to offer basic support or treatment because, in their eyes, I'm not autistic enough until I have a German diagnosis. My official UK one seems not to cut it. As if autism were not an internationally recognised condition, but a local status granted by German paperwork.

Meanwhile, here in Germany, I've been on a waiting list for over five years to get their version of the same diagnosis. Be that as it may, the facts aren't changed by a piece of paper. Their assessment hardly changes my day-to-day life, nor does it make my interactions any easier.

Coming out as autistic has strangely similar costs. In Romania 15 years ago, being gay was still largely considered a "Western problem". But much like in Romania back then, in Germany today, most people seem to think they haven't met any autistic people. Statistically, that is almost impossible. But since most of us don't have a diagnosis, and many of us aren't even aware of it ourselves, there is a general impression that we are an "American problem", not a German reality.

Thus coming out is instantly met with suspicion. Either you fit the narrow image of autism people already have — non-verbal, intellectually disabled, preferably a child — or you are treated as something else entirely: a quirk, a gifted eccentric, or worse, a trend. Someone literally called autism a "trend diagnosis", even though I don't see many people getting the diagnosis to begin with, least of all myself.

3. The New Stigma Is Disbelief

I even tried to be honest about it and wrote it down in my résumé once. I wrote autistic and ADHD, and described my disability, my limitations, but also my assets: the tendency to obsess over details, to not stop until the work truly represents my standards, to analyse the same thing from tens or sometimes hundreds of different points of view. Autistic people are known to find the cracks in any system. You'd think that would be a valuable asset to have in any company, regardless of its domain. And yet, with rare exceptions like Auticon, who hires mostly autistic staff, we aren't treated as such.

At least in Germany, there is a cruel silence and distance that surrounds the topic. People may be curious about it at first, or try to use it to forward their own image of being tolerant and inclusive, and even say things like, "I must be a little autistic too!" But the second it comes down to practical inclusion and accommodation, you're accused of “using your diagnosis to get things”.

These are verbatim reactions I have gotten, and keep getting on an almost daily basis. My autism has been described to me as laziness, as opportunism, as a “bonus” — imagine that — all by people actually entrusted with the responsibility of creating a fairer world and helping disabled people equalise their disability through support: universities, employers, social services, and even psychiatrists.

Even social media, the very space that brought about more awareness, has now decidedly turned against us. After one video of a couple's therapy session with a recently diagnosed autistic man, the internet went up in flames. Titles like "Using your diagnosis as a WEAPON" started popping up everywhere, and the hatred surrounding them was nauseating, to say the least.

This man had only recently been diagnosed, and you could see his demeanour falling into pure panic as he was accused of using this new information as if to gain something from it. I'm not saying that someone can't or wouldn't use their diagnosis as a weapon, but I am saying that using our own diagnosis as social leverage is akin to entering the social Olympics when you're barely trying to survive small talk.

Neurotypicals quickly assume that we would abuse the support or accommodation given, in ways that they themselves might, if given the chance. But we need this accommodation not to profit from it, but to achieve more equal access.

4. Awareness Without Accommodation

This bizarre view that “all people are equal and I treat them all the same” seems to corrupt the minds of people. Instead of lending a helping hand, you're more likely to get a hard elbow instead, because "life is hard", so why should I help you? Just because you're autistic? What does that have to do with anything?

In fact, there seems to be a sense of pride in not giving disabled people accommodation.

The very institution SPD, the Sozialpsychiatrischer Dienst in Berlin, entrusted with the most difficult and sensitive cases, denied my desperate appeal for help and remarked, “Call us when you're homeless”, which is the very thing they're supposed to be preventing and the very reason I appealed to them.

There is also a serious difference between institutional discrimination — not getting a job, a place at university, a flat — and private discrimination: not being believed, supported, understood, or seen. Many times these overlap, as seemingly "simple" things genuinely require external help, from the ability to self-regulate to being able to grocery-shop. I had people tell me, "I don't like shopping for groceries either, so I must be autistic too, then!", to which I replied: "Only if you get panic attacks in front of the yoghurt aisle because you don't understand why there are 500 types of the same yoghurt, while the lamp is screaming in your brain. Then yes."

We don't seem to understand or accept "spiky profiles", as autism expert Sarah Hendrickx put it, who also gave me my diagnosis. But I'd argue that we do in fact accept spiky profiles, just not ones that are divergent from the socially acceptable ones. For example, it is perfectly acceptable to not be good at maths, or do your own taxes, or accounting. It is acceptable not to be good at drawing, or singing. So imagine if we based social acceptability through those metrics instead: disability would look very different. You can't sing in tune, or worse, not harmonise? There's an institution we can send you to, to force it into you. You can't do differential equations in your head? You won't get a job, or a flat, because who can ever trust someone who can't do higher abstract maths in their head?

Likewise, you're not good at social language? It isn't your native speech? Then why should anyone ever trust you?

5. The Social Disability No One Understands

It is almost extraordinary that, despite the very fact that social abilities trump even intellectual ones, and that the true measure of success in society is often how social you are, not how intelligent or gifted you may be, we have almost no instinctive understanding of what a social disability means.

For neurotypical people, social understanding often seems to be built out of tone, timing, facial expression, implication, emotional atmosphere, and only then information. For autistic people, at least in my experience, it is almost the reverse. The information comes first. The words come first. The factual content comes first. The social cues, if they arrive at all, arrive late, faintly, or in a language we are still trying to translate.

A social worker, in fact my social worker, the one eventually assigned to help me, remarked that I had “two hands and two legs” and thought nothing of it. As if depression, crippling anxiety, or autistic burnout would be helped by merely owning hands. To make matters worse, he refused to acknowledge the problem or apologise for it, defending his lack of understanding and sensitivity. He mentioned a different client of his, with bipolar disorder, who benefited from his being very strict and harsh, and assumed I would too, thus only increasing my anxiety and desperation even more.

How come we instantly understand intellectual disability, physical disability, and to some extent even mental disability, yet have almost no understanding of social disability?

It is the most crucial attribute to have, or practise, and we take it for granted. So much so, that the very idea of someone not possessing that quality seems like science fiction.

And of course social abilities vary, and they form their own spectrum, but that alone doesn't make anyone “a little autistic” too. Rather, it should inform our understanding and empathy towards people who lack in that department altogether. Or indeed, have an entirely different operating system.

6. When Autistic Distress Is Read as Threat

People seem to react even violently when they aren't met with the expected social response or responsiveness. If you're delayed in your reply to a direct question, or have the “wrong face” whilst doing so, suspicion instantly takes over and begins to dominate the dynamic. As if social interactions weren't difficult enough, quite literally the disability itself, you are now also faced with the toughest version of those situations: pure suspicion and distrust.

In my experience and observation of myself and others over these past few decades, in a difficult social situation or even an argument, autistic people tend to become “more autistic”, and neurotypical people tend to become “more neurotypical”. And that shouldn't surprise anyone, as in times of stress social masking becomes harder to sustain and we revert to our more basic and natural forms of being. For a neurotypical person, that may mean becoming more socially and emotionally demanding, and seeking validation, whereas an autistic person may become closed, guarded, fearful, and anxious.

Many such dynamics keep escalating until police may be involved. In fact, studies show that autistic people can have significant contact with police: one nationally representative U.S. study found that by age 21, about one in five autistic youth had been stopped and questioned by police, and nearly 5% had been arrested.^[1] A Canadian study of autistic adults found that more than three-quarters had experienced at least one police interaction, with 53% reporting four or more.^[2] The pattern is not imaginary; autistic distress is often placed directly in the path of authority. In Germany, only broader research on police discrimination was done and it points to major data gaps, including around disability.^[3] So perhaps we are not looking closely enough at this because we still treat it, again, as an “American problem”.

I myself have been physically held in place by Ordnungsamt officers, who grabbed me by my backpack and would not let me leave until the police arrived. I have the incident recorded. They had no legal authority to do this.

By that point, I was in the middle of a panic attack, and the public servants kept treating my odd behaviour as proof that I needed to be controlled. This all happened because I was training my service dog, and they decided to turn a leash dispute into an assertion of authority.

My explanation didn't matter to any of them. I was held in place like a criminal, and fined. The police wrote a report in favour of their colleagues.

Even my attempt at contesting the fine was refused in the same spirit: as if I were trying to get away with something, rather than trying to explain the reality of my disability and the fact that my dog was the only reason I was able to leave the house to begin with.

7. Naming the Thing

I wish I were a singular event. I wish it were just my bad luck, or my face, or Mercury being retrograde. But sadly, that isn't the case. I'm hardly alone. From higher education, to employability, to being detained for simply being different, these are not just statistics. This is our life.

And any person belonging to any marginalised group will know exactly what that means: what discrimination is, how it feels, how it can make you hopeless at times.

But unlike most other marginalised groups, autistic people don't actually have communities around them protecting them, at least not to any measurable extent.

Sure, there's some activism for disability, but usually for physical disabilities, not mental ones. Sure, there are all these videos online and some Facebook groups, but quite honestly it's like putting a group of people in wheelchairs together and expecting them to build stairs on their own, just because they have the internet. Autistic-led and autistic-only social groups, when everyone is barely holding on to their own lives, let alone has entire understanding structures for all forms of autism, simply can't create the spaces we so desperately need.

Meanwhile, television has helped make the discrimination against autistic traits permissible. Not only by turning autistic and neurodivergent people into stereotypes, but by making the bullying of neurodivergent behaviour feel funny, familiar, almost deserved. From Sheldon to Dwight Schrute, the joke is often not around us, but on us.

In The Office, Dwight is not simply an eccentric character who is sometimes teased; the repeated mocking, correcting, baiting, humiliating, and punishing of his heavily autistic-coded limitations becomes one of the show’s central comic engines.

And this is exactly why the discrimination is so hard to name: it is everywhere, but it has been normalised to pass as humour, honesty, impatience or even "common sense".

Research on autism stigma also shows that non-autistic adults can hold both explicit and implicit biases toward autism, and that some implicit associations remain even after acceptance training.^[4]

It must therefore be named clearly.

I wish to call this Autisive-Reflex: anti-autistic ableism, the structure by which autistic difference is converted into suspicion, delay, denial, and punishment.

Autisive-Reflex is not simply individual prejudice. It is the machinery of disbelief, infantilisation, exclusion, and institutional suspicion aimed at autistic people. Its first movement is the reflex of suspicion: the moment autistic distress or divergence is read as dishonesty, entitlement, danger, or defiance.

I call this structure autisive in nature when it follows a recognisable pattern: the demand for impossible proof, the reversal of accommodation into “special treatment”, the infantilisation trap, the punishment of dysregulation, the refusal to recognise autistic distress until it becomes a crisis. Not every misunderstanding is autisive. But when misunderstanding hardens into suspicion, exclusion, or institutional punishment, it becomes part of the broader autistive-reflex.

8. Ending: Institutional Unawareness

The main issue seems to be that we have fundamentally different measures of understanding.

In studies of emotional and attitudinal communication, Mehrabian and his colleagues famously suggested that words may account for only a small part of how meaning is socially interpreted, while tone, facial expression, and other non-verbal cues carry much more of the emotional message.^[5] That is precisely the world autistic people are expected to survive in: one where the factual content of what we say may matter less than the tone, timing, face, posture, and atmosphere surrounding it.

For neurotypicals, communication can often seem to operate through something like 90% social cues and 10% information. For autistic people, it is often almost exactly the opposite: 90% verbal or factual information and 10% social cues, if even that. So no wonder we don't really get along. The more stressful the situation, the more those remaining 10%, the already impossibly narrow and fine line that connects us, start to disappear.

This is why Crompton and colleagues' “Chinese whispers” study matters. It found that autistic people passed information to other autistic people as effectively as non-autistic people did with other non-autistic people. The problem appeared most clearly in mixed groups, where autistic and non-autistic communication styles collided and information transfer became weaker.^[6] In other words, the difficulty is not simply inside autistic people. It appears in the space between us.

And there is almost no awareness about this. By which I mean institutional awareness.

There are no serious trainings being done, no real coaching, no structural literacy. My own university has not managed in ten years to create any meaningful form of accommodation for my needs. They referred to my needs as "bonuses" which would be unfair to other students, or downright impossible, when I asked for video recordings of lectures. Even when Covid lockdown came and they were forced to record lectures, they found new ways to make them inaccessible to us, and soon after reverted to not making recordings at all again.

The dominant "argument" in all these situations has been: "We can't possibly accommodate every participant's needs! That's just impossible." But autistic people aren't a quirk, nor a preference, but by societal design and definition: a disability. And accommodating our needs isn't a never-ending process. Much like the needs of physically disabled people, a few accommodations can go a very long way for very many people.

If this article succeeds at anything at all, it should be this: do not let the virality of certain videos, or the feeling of autism awareness, cloud your understanding of the reality. It is not romantic. When all is said and done, we are in fact at a huge disadvantage. There is something called autistive-reflex: the active and specific discrimination against autistic people. And social ability counts more than you ever thought.

So if you want to help your autistic friends, ask them this: Can I write an email for you? Can I make a phone call with you, or for you? Do you want me to help draft a reply to your boss, landlord, university, doctor, or even police officer? They may have misunderstood where you were coming from. Do you want me to come with you to that appointment?^[7][8][9]

These may seem like little things for someone socially able, but for us they can be immensely difficult things to do. Not because we are incapable, but because the social demand attached to them can be enormous. And we do do them, but just like with any other disability, it may take us ages to get them done, and even then probably not to the same standard as someone more able. Five minutes of your life could mean weeks or months for us.