I’m trying to fill out the final accounting form for funding I received but hesitated to apply for in the first place because I already knew the bureaucracy surrounding it would become a huge issue for me.
After encouragement from other people in the form of:
“xy funded their project and it was a huge success,”
“you need to have more confidence in yourself,”
and
“xy said the paperwork is easy to deal with,”
I applied and got accepted.

But when the final accounting was due and I had to submit bills, type in numbers and spend days and weeks overwhelmed, anxious, and anticipating something bad, I was always told to “ask for help.”

The problem was that I didn’t know anyone who understood these systems well enough to help me and I also didn’t have the money to pay someone for support.
So I lost a very large sum of money because I filled out the documents wrong.
Money I didn’t have to begin with - hence why I applied for funding.

Ever since moving out of my parents’ home as a teenager, I have depended on financial support because I couldn’t sustain myself independently. I’m very grateful for the support I received but I also spent most of my life hovering around the poverty line because of it.
The only period in which I was actually successful at earning enough money to live off was when I worked myself into severe burnout and eventually ended up diagnosed with autism and chronic illness. The little money I managed to earn during that period went straight towards the consequences of my funding-form errors.
I don’t think that would have happened if I’d had proper support and because I lacked both the financial and social capital back then, I sometimes wish I had been open to using AI at the time.
Not because I think it’s morally or ethically right but because it gives me access to being taken seriously by a system I was never taught how to navigate.

Since using AI as an accessibility tool for bureaucracy, dealing with offices and authorities, translating medical records into language I can actually understand, double-checking doctors’ biased interpretations of test results, checking bills and dealing with all kinds of paperwork my life has become significantly calmer and easier.

Of course, in an ideal world there would be a real person available to help with each of these things. But I don’t know that many people who possess this kind of knowledge and are willing and able to help me. I also don’t have the social capacity for the level of communication and coordination that this kind of support requires. And I definitely do not have the money to pay someone to deal with my paperwork for me.

Being disabled already means being forced to navigate a crushing capitalist system that often treats us more as nuisances that must constantly prove their worth than as people who genuinely need support. Because of that I am tired of the general moralization surrounding AI use - even though I do agree that it’s an inherently evil thing to exist.

But AI also exists within a context that is not ethical to begin with.

Existing and operating within oppressive systems while simultaneously expecting that “asking for help” will actually lead to “receiving help” is a privileged position to begin with.
Because what if nobody helps you?
What if you don’t know anyone to ask?
What if you don’t speak the language in which the cry for help is expected?
What if your health has deteriorated to the point where communicaton and social interaction is no longer possible?

There is something strange and funny about using one part of an oppressive system to help survive another part of that same system. But in some ways it feels like letting the system fight itself while leaving me out of it.

The diagnosis of autism spectrum disorder was established in 2013 in the DSM-5, with severity levels from 1 to 3 that are based on the level of support each individual needs. Before that, there were different labels like autism disorder, Asperger’s syndrome or atypical autism, which weren’t classified in levels but rather in “high” or “low” functionality and how much the autistic individual affected their environment and other people.

Before the DSM-5 criteria changes, an autism diagnosis was largely based on outward presentation, how much autistic behavior disrupted others and how “functional” someone appeared in society. The self-perception and lived experience of the individual barely counted.

I spent my entire childhood and teenage years before 2013.
So no, it’s not surprising that I wasn’t identified sooner. Add to that the massive differences in male and female socialization and presentation and it becomes even less surprising that nobody thought I was autistic because the dominant cultural image of autism has historically been based on stereotypical male presentation so essentially no one knew what to look for.

Then there’s a larger societal issue: disabilities are often perceived primarily as deficits so most people view them as inherently negative. Calling myself disabled or, in my case, autistic is synonymous to them with calling myself stupid or dumb because of their own ableist beliefs.
And because they’re empathetic, they don’t want me to talk “badly” about myself and therefore dismiss whatever I’m saying and call me dramatic instead.

Throughout my life leading up to this diagnosis, I manually learned to behave and act in a way that was expected of me and I probably spent most of my life’s energy on exactly that while my efforts remained largely invisible and unacknowledged. Apparently I also wasn’t exceptionally good at it because the majority of people still clocked me as weird.
Up until my late-twenties my “failures” in life were viewed as my individual path:
A lot of trial and error like changing schools five times, dropping out of university twice, dropping out of an apprenticeship, never sustaining full-time employment, struggling in all relationships and always facing financial instability - all of this appeared to be by my own choice and I thought so too back then. If I would have wanted to, I could have.
And most people saw me as the person who could have done it and who simply chose not to. As if I hadn’t tried.
But after 30 years of this pattern it’s probably obvious now: I couldn’t.

It’s hard to comprehend the „why“ because I’m smart and apparently intelligence should be sufficient to succeed in conventional structures. Most people simply can’t imagine how someone can struggle with the “simplest” task, like talking to someone, while simultaneously having no issues learning an entire language or playing the piano by ear. The amount of overwhelm I experienced everyday was usually overshadowed by my ability to play a character and copy the behavior of others. Having a gigantic memory card as a brain that filed all of this information helped too.

The coexistence of my struggles and my skills seems contradictory and hard to understand but the difficulty in that isn’t necessarily a lack of empathy but a lack of imagination. We are often unaware of the areas in life where we experience no struggle. If you can walk, you rarely stop to consider what life would be like if you couldn’t.
And if you naturally read between the lines, interpret subtle facial expressions and pick up on nuances in tone - without ever consciously learning to do so - you may never think to question whether others find these things challenging.
And that’s not to say that I possess this kind of imagination. Quite the opposite.
I don’t understand most people’s behavior at all. The difference is that I must continuously study and adapt to the dominant norm because it structures the society I live in and I’m constantly confronted with behaviors and rules that I don’t understand either but have to accept as truths.

Like many people I struggled with my identity but while my friends explored their identity through questions of gender, sexuality, profession, political beliefs and community, I barely even felt human.
Despite their many differences they mostly operated within a fundamental framework and enjoyed the same sensations, feelings and shared an understanding of basic human needs and behaviors that I didn’t.

With getting older and reaching a more adult state in their human experience, most of them found their place in some conventional or unconventional way. If they’re consistently happy with their life, I can’t necessarily tell. Most of them have a job, pay their rent, are in some kind of romantic relationship, have friends. Some have kids, some have hobbies, some travel. They pay for their insurances and manage their finances. So through the lens of generalization, they’re pretty normal members of society, which isn’t to say that they don’t face their own problems or discrimination because of their gender, race, political beliefs or who they’re in love with.

I think it’s difficult to impossible to compare individual experiences and the level of difficulty and struggle someone faces. And I also strongly believe there shouldn’t be a hierarchy of suffering.
All I know is that even though most people I know struggle with one or more areas in their lives, most of them are able to partake in some form in society, be part of a community, form meaningful relationships and sustain some kind of employment and I could never do any of that long enough to reach stability.

Of course I went to therapy and when describing my issues, the most common interpretation was that I thought too much and felt too less. It was assumed that I had a deep secret hidden emotional world that I was just suppressing because of anxiety and that’s why I seemed distant and disconnected to other people.
Surprise: there wasn’t.
I was also encouraged to be more positive about myself and to focus on my strengths: creativity and intellectual abilities. And while I am proud of my skills and have worked hard to develop them, they have never translated into sustainable participation within existing economic and social systems. Creative work, in particular, often depends on networking, self-promotion, and navigating unspoken structures, which can be especially challenging for someone with a communication disability.

I’m often told that I’m not alone in my struggles, that there are many people out there who feel the same way and that’s strangely supposed to comfort me which is very irritating because I’m not looking for solidarity in suffering and I don’t derive comfort from knowing others are hurting too.
I also know that I’m not the only one - it’s a systemic issue, not a personal one.

The autism diagnosis gave me an explanation for the pattern of my life so far and the relief of knowing it wasn’t personal failure and that my issues are not a matter of mindset, identity or how hard I’m trying. They’re a matter of design and design determines who is considered capable.

Telling people via digital media that they should go analogue in itself is an absurd proposition and even if I am very much in favour of physical media, reducing doomscrolling and being more intentional with attention and time - I feel like there is a rise in unessesary pressure to go back to the “good old times” of analogue media. Undifferentiated. Because it’s pretty.

Avoiding your phone entirely and replacing every single function it serves with a separate object is consumerism at its finest - and often an incredibly privileged position. Most people with ordinary jobs need their phones to work, to stay reachable across different apps and to meet professional and social expectations that simply cannot be handled offline. Most people also do not have the time, money or mental capacity to write letters or postcards to their friends who in most instances also won’t answer because they also don’t have the resources. We probably all knew someone (annoying) at some point without a smartphone who was always forgotten because no one wanted to go through the hassle of sending an extra invitation via SMS every single time.

I am fully in favour of spending more time offline but never with the goal of eradicating my smartphone entirely. A smartphone is first and foremost: a tool.
One you can choose how to use. In fact it may be the most minimalistic tool we have ever had. One object to rule them all. If minimalism is the argument the smartphone always wins.

What they’re really talking about is not minimalism but dependence, interest and intention.

Yes, screens can be addictive and it would be naïve to tell people to simply “use them differently” but investing large amounts of energy (and money!) into avoiding them altogether does not sound particularly healthy either. Buying outdated navigation systems to avoid Google Maps on your phone only to get lost, seems absurd - especially considering you should not be on your phone while driving anyways.

Similarly: filming yourself on a digital camera to argue for analogue superiority, then editing the footage on a laptop and uploading it to YouTube doesn’t really make an convincing case for going “analogue”. What most people actually mean is old digital tech that does not connect to the internet and that is fine but please use the correct terms.

Picking up a book solely to avoid doomscrolling does not make you enjoy reading. Journaling by hand is only fun if you actually like journaling. Any hobby is rewarding if you enjoy the process not just the satisfaction of completion. Much of this trend seems to stem from people not knowing what truly interests them and mistaking productivity and self-optimisation for joy. That’s not an individual failure. Capitalism rarely encourages people to explore interests that are not profitable.

Another confusion in these spaces is between materialism and consumerism.
I am a materialist. I like things, I like objects and I like using my possessions. I care about quality and aesthetics and I do not think it is inherently wrong to prefer spending money on a well-made item rather than an experience. What matters is whether something is used and loved.

Consumerism on the other hand is ownership without care - collecting for status rather than interest and owning for the sake of owning.
Collecting books and reading books are different hobbies. Journaling and buying stationery supplies are different hobbies. Photography and collecting cameras are different hobbies. None of these are wrong but they are not the same.

Perhaps this perspective comes easily to me. I have always had very strong and specific interests thanks to my autism and I may simply not understand what it feels like to lack them. But I struggle to see the point of doing something solely to avoid another thing if you do not actually enjoy it. There are people online who read with the attitude of winning a race, finally finishing something, being proud of the number of books they read in a very short time, challenging themselves to read a certain number of pages in a day as if there’s a prize to win.
Reading IS the prize. If you’re just doing it to get through it and have that tiny endorphin rush when you’re finally finished - you’re doing it wrong. And nobody is obligated to read, journal or cultivate analogue hobbies to live a good life.

Much of this movement is a trend sprinkled with nostalgia. And as someone who grew up without the internet and smartphones I can somehow tell: it did not look like this. We watched TV and sent SMS on flip phones (IF we had mobile reception) but we did not document our lives aesthetically because there wasn’t anyone to show that to. There was no social media.

Avoiding smartphones or social media is not the solution to a lack of interests.
It can be a temporary tool to help you discover what genuinely interests you. But simply copying other people’s “analogue” hobbies will not free you from screens in the long run. And smartphones will follow your interests, algorithms respond to what you care about and social media can be very inspiring if you already know what you want from it. It comes down to intention and to knowing yourself well enough that the constant pull of the internet loosens its grip. And if you end up doomscrolling once in a while it’s not a moral failure - it’s simply your brain taking a break and that’s allowed too.

Over the past two years, I walked countless paths towards healing. I have followed strategies, tried therapies, conducted self-experiments, tested everything that seemed sensible without financially ruining myself and I am tired of it all.

I am tired of therapy.

I no longer wish to be made to feel that my illness lies entirely in my own hands. That if I am still sick it is simply because I have not yet found the right approach, the right medication, the right supplement, or the right doctor and I should keep on searching for my personal pot of healing.

I know that most people mean well. I know they only want to help when they ask what I have already tried, whether I have seen Doctor X, whether I have attempted to obtain Medication Y, or whether blood value Z has been checked.

But it’s not helping.

It drains my energy and that’s something that I have very little of. I do not want to spend my remaining capacities explaining why I do not “look that ill“ to you; why it is not that easy to get an appointment with specialists; why many medications require prescriptions or are not approved for my condition; why I cannot afford Therapy X and why I refuse pseudo-scientific humbug disguised as healing.

I live my small life. I work on my small projects. I share some things on the internet. And for now, that is enough. Within the limits of what is possible for me, I have come to prefer engaging with almost anything other than my illnesses.

This seems to unsettle some people because the prevailing mood suggests something else entirely: that one must do everything possible to become well again, live a life that is worth living by their standards and be back up on their level.

We must consider even the most unreachable cures, seize every tiny chance, write hopeless emails to overbooked clinics, devote all remaining social energy to phone calls with practices and institutions, and follow every hint that might lead to new, different, alternative treatments.

The pressure of healing. The subtle violence of hope.
Because we are not allowed to be ill and illness is only acceptable if it is something to be overcome.

Don’t get me wrong: I would rather be healthy if that was a tangible option.
This is not glorification. It’s exhaustion and the realisation that my brain takes far more joy in successfully completing a small handmade project than in finishing yet another unsuccessful therapy.

Life continues even when one is ill. And I refuse to live a life lived for speculative healing.
What if I do not recover? What if the 118,954th attempt fails as well?
I will have spent years of my life chasing a phantom and running after hope instead of practising acceptance and shaping my life around what is actually realistically possible for me.

Of course I do not resist meaningful attempts and should research one day deliver treatments or medications with real promise: I will run to swallow whatever they feed me. But until then my motivation to continue investing time, energy and money into a cure that - according to current knowledge - remains unlikely, has grown very small.

Thank you for reading.
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