Stand proud

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Hi there!

Being a new member of this board, I have read a lot of recent topics (I am data gathering junkie, it’s my fix) and I can say that one thing has struck me:

A whole lot of people just do not accept their spectrum.

To get something right out of the gate: I am not here to tell you how to live your lives, nor I am here to give you any psychological advice. I just want to share my perspective, which is based on my own experienced as AS person who was diagnosed at 33.

Yes, I’ve struggled with many things, especially in terms of social interactions. I am pretty functional, though – I have and had decent jobs I was/am successful at. Although got my first long-term, decently paid job at the age of 26, so pretty late. I had several longer term relationships with women since my teenage years and I am married now, having kids. I also was moderately successful at fitting in – had few friends (although not that close) through my teenage years, was sometimes a part of bigger “packs” gathered around my interests. Had a handful of people I’ve considered true friends for a while in my life, even though no such relationship lasted for more than few years at best before falling apart to the point there’s zero contact whatsoever. I am also a person with very low social needs, my wife, kids and my dad are enough of contact with humans for me.

I do realise that for a lot of you, things are much harder. That struggle is real and it weights you down. That you cannot just wave your problems away. That you are in situation which makes it hard to try to change how you function, but still, you want that change, for various reasons.

Still, here’s my word of advice:

Never apologise for who you are. You do not owe people that. If you want to try to fit in with the rest of the people, if you truly feel the need – by all means, attend therapies, seek guidance of psychologist. Self-improvement is a good, healthy thing if it comes from within. But never do this to please other people or just because you feel the pressure. Never try to conform to social conventions in spite of yourself.

Yes, “we live in society”. This is a world run by neurotypical people, for neurotypical people. But this doesn’t mean that their vision of how people should function, behave and so on is the only correct one. This doesn’t mean that their expectations and requirements are something holy that you absolutely must pursue.

Sure, it is good to find a common language with people for your own benefit. Masking is useful. But it shouldn’t be a tool you are using 24/24 (minus the time you sleep or are alone) at the expense of your own mental health. Limit it to situations when you absolutely need it, when it can make things go more smoothly for you, when there’s something in it for you.

I mean – NT people do such thing ALL THE TIME. They act friendlier towards others if they really like them, when they want something from them and try to appear “better” (by their own definitions) in front of people they want to get on good terms with. Sure, it is not as draining and complex as in our case, but in the end, it is still a tool. Are you carrying a screwdriver all the time in case you might need it? No, so give yourself a break and do not carry your mask on all the time. Put it on when it is needed.

Thing with societies as a whole (and majority of people) is that they must be forced to accommodate the needs of and accept the minorities. They do not give that out of their own will. Seriously, think about this.

Do folks think about needs of people with movement disabilities when they plan the urbanscape, or when they simply imagine how it should look like? No, they do not. Regulations need to be set in place, mandating how buildings, pavements and so on should be built because almost no one gives these problems a thought out of themselves. Accessibility must be enforced by a letter of law and places where it isn’t are a nightmare to move around for people who aren't able-bodied.

Here in Poland we have something such as civic budget. The local community can vote how a part of city’s budget for given year will be spend in given districts. Anyone can submit a project. Most of these are submitted by people who want to make easy bucks by organising things like yoga classes, nordic walking classes, movie showings at the parks etc. But there are also infrastructure projects, like making zebra crossings near local school safer and increasing accessibility – building ramps, wheelchair lifts and so on. There are also projects about culture, environment (such as planting trees) and similar. Last year, in my city, the split among types was: 39% of votes for projects related to culture, 17% to sport, 14% of sport infrastructure. 51 229 people voted. For example, there are winners of last year’s edition in my district:

-Building a new park
-Football facilities
-Planting trees
-Wooden houses for bugs and other small animals (seriously)
-Additional police patrols
-Gym classes for citizens

The trend is the same for other districts in the city. There were also city-wide projects to vote for. Same thing. There are few of more general usefulness ones that made it (like more public toilets or renovating some pavements, benches at bus stops), but most of the projects submitted were about cool stuff for healthy people, I dare to say.

Out of these few, that were submitted regarding public space accessibility issues, not a single one has won, none will be funded. There was no single project about helping the most vulnerable – like funding meals at schools for children from poor families or building a shelter for homeless (or just safe space where they can go for some warmth and a bowl of hot soup).

What’s that? Children go around hungry? People freeze on the streets? Others are trapped in their houses because they live on 4th floor of a building without a lift?

Pal, we have more serious matters to take care of. These insects and rodents need houses. And most importantly, citizens really need these Teqball tables.

Whatever Teqball is.

People with disabilities are good example, because they are marginalized. Very few of them are socially active, even less work. Those with more serious issues, who need constant care, are in most cases effectively cut off from the rest of society. So are their families, who are exhausted from taking care of them 24/24 without any relief. These people do not have energy and most of the time are too depressed to fight for their right to live a good life. They are left alone. Most of the time, live in poverty, off social funds which are laughable in amount – even more so, when you consider that they have special needs to attend to.

When you ask 8 years old kid what is the thing they dream of and instead of saying things like “to go to Africa and see elephants”, “visit Disneyland”, “a Death Star LEGO set” or “a new videogames console” they tell you “a new electric wheelchair so I can move around on my own” you know that we live in a messed up society.

People with disabilities are not pleasant sight for most. Seeing them brings thoughts about one’s own mortality and the fact that nothing they have is granted forever. One unfortunate turn of events can lead to them being just one of these people they do not want to look at. In some, that sight invokes a sense of guilt – that as a whole, society leaves these people alone and lost. These are not pleasant feelings and people want to feel good all the time. Being anything but upbeat, happy-go-lucky is not welcome.

But who is responsible for that state of matters? To put it simply, our entire species as a whole.

Humans severely lack empathy towards their own kind. But furthermore, humans actively weigh down those who are not fitting their vision of the world.

Acceptance is not given. It needs to be forced upon society, respect must be taken by fight. Take a look at what LGB communities were going through in western countries and what they are going through still in many parts of the world. How trans people need to stand up for their rights and fight for society accepting their existence. How ethnic and religious minorities have struggled and many still struggle under systemic and cultural reluctance towards them.

While I do not think that people with autism suffer from exactly the same types of oppression, exclusion and aversion the groups I’ve mentioned above, in my opinion, we are facing challenges based on the same mechanism. We are another disturbance, threatening vision of perfectly aligned world most people have in their heads.

Speaking from my personal experience, there were many times when I’ve met with antipathy, spite or even outright hostile approach coming from NT people, for things like:

-telling the truth instead of comforting lies
-correcting someone’s wrong information
-asking multiple sources about the same thing just to have more data to work with and making sure I am not missing something
-not engaging in small talk
-speaking the way I am speaking (rather not standard and quite often official, but nothing offensive)
-not laughing at poor quality/offensive jokes
-not drinking alcohol or taking recreational drugs at parties
-simply speaking with people deemed “dumb” and “uncool” by others
-not looking people in the eyes
-defending my position at given subject with logical arguments, when I know I am right

List could be eight pages long. But the worst offence, by far, is breaking out of the borders of social norms and neurotypical interaction with people. Things like:

-saying that I won’t speak about given subject because I do not want to
-stating that I am not interested at all in given thing others want me to get into
-not answering to stupid questions or teasing, sometimes walking off without a word to not waste time on people who simply want to irritate or mock me
-not caring how high someone is up the chain of command or what position they hold when speaking with them (funnily enough, this is most often not a problem for the people in question, but for others around)

And so on. Basically, doing anything that NTs won’t ever do because of their internal pressure to act within imprinted social norms. This is like throwing a firecracker into a hive of hornets – a 100% sure way to piss them off. Why? I only suspect that mechanism of jealously kicks in: Who this guy thinks he is, to do this thing I would like to do but won’t, because it’s not what you are supposed to do?

There are numerous factors to that. Upbringing, family and social background. The way brains of people are usually wired.

Have you ever noticed how hard it is for people to say “no”?

Like, most people I knew in my life had a hard time saying no to a telemarketer who is calling them to offer a loan, new phone plan, subscription and so on. HI'm sure that most of you have observed something similar: how NT people waste time on fruitless exchange of words just because internal voice and social conventions prevent them from hanging up the phone.

It’s like a response cannot be binary choice for them: yes or no. If you are disagreeing, you need to go through steps like:

“well, maybe you are right, but…”, “I am not entirely convinced”, “I may give it a thought”, “Not promising anything, but will think about”, “How about a different solution/thing?”, “I don’t think this resonates with me”

before saying actual “no”. If you don’t, you are a cruel, awful person who doesn’t have any respect for the others or their feelings. At least for many of NTs.

I had a fight with one of my girlfriends over that. A lady called me and wanted to sell me something, I’ve simply disconnected without saying a word. A girlfriend was outraged at how can I be so rude and that I shouldn’t do that. I asked her something along the lines:

Why? It is a person that I do not know and most likely won’t ever meet, that have literally zero impact on my life and the same is true on her end. I would say “no” anyway, so why should I waste my and her time on pointless conversation? She is better off calling someone who takes the offer from her.

She was visibly shaking from anger and shouted People do have feelings, you know!. I told her that I won’t get into a fight with her about such meaningless thing and do not want to spend even a second more discussing it. She walked off from my apartment, bursting into tears. It was a week of silence after that.

This example shows how inane things NTs can take for granted and expect others to do the same.

By far, the biggest issue for me is that people leave bits of important information out of their communication and expect you to magically figure them out. Or when they simply do not say what they want from you and expect you to guess on your own. I mean, even other NTs do not have 100% accuracy in that! This is insanely inefficient way of achieving anything with people, yet people do this all the damn time.

In my opinion, language is not really optimal way of data transfer between individuals. Way too many things can get lost in process of exchange due to different vocabularies and skills related to using them.

But it is the best we have at the moment and most likely, ever. In the end, language is still efficient enough to provide someone with information ranging from low to medium complexity. It is only high complexity concepts where things get hard, simply because of our limited attention spans. With those, writing them down is a must and people must study those – even then, they quite often do not understand the subject fully, because they do not have mental capacity for this. Not everyone is a genius in given field.

It is safe to say that for most people, daily communication won’t require them to try and describe highly advanced concepts. So why they just cannot give others all of the information verbally or in writing? Nowadays, when someone is displeased with the outcome of thing they have asked me to do, but haven’t clearly stated what parameters should I take into account and what results they expect I simply say:

Want a precise output, give a precise input. I do not want to solve a puzzle of what you want based on your eyebrows, lips and eyes movement or the way that you shook your head or waved a hand.

My close ones and co-workers got used to that and follow this rule. This is why we get along. But it is a huge issue for other people. It pisses them off, even though that it is a logical expectation to have. I’m beyond caring at this stage, though.

Years ago, in my mid-twenties, I’ve lost a person who I considered a close friend because she has not tell me that she is romantically interested in me. We knew each other for years, dated other people. When one of my relationships has moved forward (moved in with a partner), she had a breakdown and told me that she has been waiting for me to make a move for a long time and "cannot do this any more". That I should figure out she is interested in me from how much time and attention she gave me. Asked me to ditch the girl I was with, for her. I didn’t, as I’ve been in relationship for 8 months already and genuinely in love with my partner. Furthermore, my friend was with a guy for several months already.

I’ve always respected the boundaries we set between ourselves and never though of her in romantic way. Simply because it was logical to me, that if she is with/seeing other men, she doesn’t want to be with me, so any attempts to woo her would be futile and would ruin our friendship. In my mind, getting intimate with her was off-limits. I was happy with having someone to talk to about my hobbies, politics and culture – it was enough. Never felt any kind of sexual tension between us either. I’ve lost someone I valued, one of very few people I considered friends in span of my life, because she wanted me to figure something out and started to hate me because I didn’t.

She is no longer in my life. A shame, as it was a very intelligent person - made me rethink a lot of thing in my life and become a better version of myself.

To put it simply: words. Teach people around you to express their feelings and needs with them. It is not something difficult to just say what you want, isn’t it? At first, it may seem weird and unnatural to them. But over time, they will not only see benefits in AS-NT communication for them, but also in NT-NT. Way less drama guaranteed.

To get to the bottom line of this super long post:

Thing with us, AS people, is that we do not tend to aggregate into groups, let alone act like one. There won’t be any organised AS emancipation movement, ever – it is not in our blood, I dare to say. This limits our ability to carve a space for us in society. To make people seeing that we are in fact, normal and how we function is just as valid way to do so as theirs is.

So, what can we do?

Each one of us can be an advocate for neurodiversity. We should stand proud of who we are – we are owing this to ourselves. That is the only way to make a world better place – maybe not only for ourselves, but also for others, if they’ll see how many shackles of social conventions limit their ability to express themselves and be their true selves.

We are expected to fit within a certain role – as people, as men, women, children and so on. But these roles are not necessary what is the best for us. These roles are not necessary what we want ourselves to be.

Most importantly, these roles aren’t set in stone.

Just like women in most of the western countries are not expected to cook, clean and take care of kids while their husbands watch TV any more, even though they were in the past, people do not have to cater to outdated and/or irrational concepts of what it is to be a “normal, functional” human. It is time to show society just that.

Do not apologise. Take pride in your own strengths – NTs quite often struggle in areas, in which folks with AS excel, so why our “wiring” should be considered less adequate?

So what that I’m “not fun at parties”? I can quickly evaluate many different, branching outcomes of any given solution/problem, while most people can think only of one or two possibilities at best. I may not be able or even want to engage in small talk, okay. I don’t get it. But I was able to gather and review information and then write a comprehensive analysis on any subject I was given at school, during my studies, at my job or even one I picked myself in field of my hobby. Always got praised for how good I am at it and got a promotion three times thanks to it, outclassing my NT colleagues.

For every deficiency I have, there’s something I am good at. I am a complex person, after all. I firmly believe that this is true for all of you, too.

This is true for NTs, too. The difference is, people with AS have an altered set of boundaries when it comes to things they struggle with and things they are good at. Our baseline skill-set is not the same and taking NT one as reference point to evaluate your own person against it, is simply doing yourself a disservice. Do not do that.

You may never feel fully compatible with world run by NTs. But you shouldn’t feel bad about it – no one have right to view you as a lesser person because you do not fit what they want people around them to be. Find your own goals, choose your own path and do not give in to pressure of being just like everyone else. You can be your own thing.

There’s a verse from a song by Rise Against, called The Numbers that highly resonates with me. Song is about protest against injustice and how people in power rule the world. Still, these lines perfectly sum up my attitude, as a person with Asperger’s, towards what I call “oppression of normality”:

Listen
F*ck what you call normal
This pressure to conform
Break free
It's your trail to blaze
Or your bridge to burn

Wishing you lovely folks all the best,

Kamil