Living in a Foreign World

20min • 18 November 2024

For more than 30 years, I was convinced that I'm a very normal person. Maybe a bit weird at times, but we all have our quirks, right? I might have faced some struggles, but I always had the impression that's just how it is for everyone.

It's not that I didn't know about neurodiversity, but the stereotypical depiction of both ADHD and autism just didn't seem to match with what I was experiencing. It was sheer coincidence that I found out I was autistic after all.

At first I was baffled in disbelief and felt like an imposter for even thinking about it, but the more I learned, the more it made sense. The reason I struggled so much to fit in is because I'm an autistic person in a neurotypical world.

I was uncertain for a long time whether I even want to share it with anyone, let alone write about it online, but eventually decided to do it anyway, because I want to help people understand.
Oh, and I also simply don't want to share the whole story over and over again every time I meet someone new.

Preface

Before diving into my story, I want to quickly mention some important things about autism and hopefully clear some stereotypes right away.

If you think about autistic people, chances are you picture a boy with weird special interests who's completely unable to have social interaction, always wears headphones and screams as soon as something is not the way he wants it to be. Maybe a brilliant mind or nerd like Sheldon Cooper from The Big Bang Theory.
These are the stereotypes that public media often show us and that many people believe to be what a typical autist looks like. But, reality is very different.

You might have heard the term spectrum or being on the spectrum as an equivalent to being autistic. The reason for that is simple. Autism is a spectrum and comes in all shapes and variations. Not a one-dimensional spectrum ranging from 'less' to 'more', but rather a three-dimensional cloud. While there are some common traits and overlapping aspects, every autistic experience is very unique and does not necessarily resonate with other autistic people.

There used to be different types of autism, including the more popular Aspergers, but the diagnostic criteria have been updated recently and now only state a single diagnosis: Autism Spectrum Disorder (ASD).

Some people talk about high functioning and low functioning, but the majority of the autistic community doesn't really like those terms and prefers low and high support needs or no labels at all.
There's also a debate on whether to use identity-first or person-first language, e.g. autistic person vs. person with autism. I personally prefer the first one, because autism is part of who I am and not a disease. Yet, as I said, everyone is different, so just go and ask people what they prefer.

Last but not least, if you unexpectedly relate to anything I talk about, keep in mind, that doesn't necessarily mean that you're autistic too. Many people relate to some aspects without actually being autistic, because, despite there being a difference, every neurotypical brain is unique a well. I will, however, link some established self tests at the end.
Also feel free to reach out to me if you need somebody to talk to. I know it can be weird and intimidating at first and I'm definitely grateful for the people I had around me during those days.

Growing Up

Let's begin, shall we? I want to briefly talk about how I grew up and what challenges I faced so that the whole story makes more sense, but I also don't want to bore you, so I'm not going into any details (just yet).

I actually don't have the most vivid memories of my early years, but I know that I've been extremely shy and didn't really want to talk to people at all. I had a bunch of friends, even though I didn't really understand the concept of friendship. I wouldn't care who exactly I was playing with as long as we had a good time.

While I liked hanging out, I felt much more balanced when I was home alone indulging myself in one of my many interests. I studied numerous lexicons and eventually memorised thousands of different species, countries, rivers, cities and flags amongst other things. Yet, my biggest passion was minerals and gemstones. I collected hundreds, knew everything about each one of them and even went to expositions. A hall full of stones was like paradise for me. Eventually Pokémon landed in Germany and all my energy went into that for the next couple of years.

In kindergarten, I was often accused of lying e.g. when reporting sensory issues like my clothes being itchy all of a sudden, but people seemed to doubt me and so I stopped complaining, thinking I was the problem after all.
With time I learned what was considered normal, mostly by analysing my surroundings and people interaction, and adapted my behaviour to fit in and get along. This includes social norms, but also facial expressions, gestures and much more.
I was going out of my way trying to be likeable, even though I still felt like I didn't really belong to the group no matter what.

School to me was rather easy, maybe even a bit boring, and once I got into secondary school I would skip more and more classes and rather stay at home and record music or do some coding. At this point, I was getting along just fine, except for one thing: talking to strangers - girls in particular.

This only changed when I made an eye-opening discovery: alcohol.
I quickly realised how much it helped me calm down and be less awkward in social situations. Only years later would I learn that this is actually very common in autistic people. Many use drugs to reduce sensory overload and get along in social settings.

Just before turning 18, I also joined a newly founded scouts group where I was more or less forced to socialise and meet new people - some of which I call my closest friends nowadays.

Adulthood

After school, I moved to Karlsruhe to study computer science. I didn't have a great start as my anxiety disorder presented itself and I experienced severe panic attacks.
In addition to that, I developed chronic stomach and gut issues. As if it wasn't enough, I was also going through my first breakup and just felt isolated and alone.

Luckily, this wouldn't last long as I soon met my future wife and made a bunch of close friends at university. Ever since then it was one of the best times of my life. I was finally amongst fellow nerds and being independent was a great feeling in general.

It was only around that time, that I really noticed some of my weird quirks that I would jokingly refer to as my "little autistic traits", not even knowing that this was quite literally the case.

For example, I need everything to be sorted in a logical way e.g. by colour or size. Not only things in the house like books or bowls, but also digital assets and even the lines of code I write. I have to force myself to use semantic line breaks instead of aesthetic ones when writing text like articles or novels. When arranging things, everything needs to be symmetrical and well balanced and I always eat my food in a very specific order.

Generally speaking, I have strict rules for a lot of things and can get really nervous, confused and even upset when my routines are disrupted. To give you some examples, I usually have a preferred seat and always eat the same meal in a restaurant. Everything in my life is planned out and systemised.

Alright, back to the story. I finished my bachelor's degree and began my career as a software engineer. Besides my day-to-day job, I also created and contributed to open source projects and eventually gained some reputation in the field which led me to the opportunity to give my first conference talk. This was both the most nerve-wracking and the most rewarding experience at the same time. But most importantly, I met some really inspiring people in the industry and decided to become self-employed soon after.

Ever since 2019, I've worked 100% remote and enjoyed being all by myself with flexible work hours. I would discover some of my unique strengths such as the ability to hyperfocus for hours without exhaustion or my excellent memory which helps me remember nearly everything, especially names, faces and facts. I still remember tiny details about people that I haven't seen in over a decade.
This also makes me the perfect candidate for the educational system which is probably why I've studied several subjects since then. Additionally, my special interests changed several times since my childhood and I'm all into medicine, nutrition, productivity and self-management these days.

My Revelation

Fast forward to last year, I turned 30 and finally quit alcohol. It was definitely one of the best decisions in my life, but I also noticed some of my old issues coming back:
I would continuously feel more and more depleted after social events. I felt ashamed and weak for not being able to keep up and really tried to push myself through even though I eventually developed physical symptoms. Without alcohol, everything was way more intense and energy draining.

After some initial research I first thought I might have ADHD and while some of the criteria definitely matched something was just not right about it. It took another six months until I stumbled over autism by accident.
I heard from a friend who was diagnosed recently and decided to do some tests myself. Not because I thought I could be autistic too, but because I was curious what kind of questions they asked. Well, and then it struck me. On every single test, I scored far beyond neurotypical results, even way above the autistic average.

I was skeptic at first and spoke with a few people including my therapist, just to find out that I am, in fact, autistic. The reason no one ever realised is that I'm really good at what is known as masking.

It's hard to describe the first days of realisation as there were so many emotions going on that I was constantly both crying of joy and exhaustion. Slowly but steadily everything started to make sense and I felt so much relief. I was finally able to accept myself. After all, I was not weak or broken - I was just different.

As I mentioned in the intro, I was unsure whether I even want to share it with anyone.
This wasn't my first disability. I was diagnosed with a connective tissue disorder that gifted me with an aortic aneurysm five years ago and I had quite some painful experiences due to that. My biggest fear was that people would, again, treat me differently now.

Yet, I was also hoping that people would finally understand me better and so I went out and started to talk about it with a few friends whenever the situation felt right. And what can I say, it turned out to be such a heartwarming experience that I decided to come out publicly. I'm really grateful for all the support and I know that I'm very privileged to say that knowing that there're a ton of people having a really hard time out there.

How I Experience The World

Ever since sharing my new reality, people started to ask me all kinds of questions. How is this? How is that? I know it can be hard to even imagine how an autistic person experiences the world. I myself first had to come to terms with the fact that the world as I experience it is completely different from the one perceived by those around me.

It took a while for me, but ever since the diagnosis, I'm much more aware of all the details and I start to notice the differences everywhere. Therefore, I started to write it down and the result is the following incomplete list.

Generally speaking, a lot of my experience could be described as oppositional.
I love the sun but can't handle its brightness. I love being with people, but it also drains all my energy. I love music, but sometimes just need complete silence.

Many things are quite stereotypical indeed while others are far less common and rather untypical for autistic people. To give some structure to it, I'm going to divide it into two separate groups: social or societal and sensory experiences.

Social & Societal

I have a hard time grasping some of the artificial concepts that we as societies came up with. I struggle with authority and hierarchy and don't really understand the concept of gender.
I never really identified as male even though I tried hard for a long time hoping to fit in somehow. The rules of the gender binary just seem arbitrary and entirely made up to me. Nowadays, I consider myself non-binary or agender to be precise.

I also don't really understand the concepts of family or friendship.
That's not to say that I don't have friends. Quite the contrary - I consider everyone a friend who's nice to me and can feel a very strong affection towards people I vibe with, up to a point where I overshare very private and personal details with strangers.

Talking about it, social interaction is a weird one.
I wouldn't consider it particularly hard like it is for many other autistic people, but I also seem to make errors that I don't even notice. People often misunderstand me and find me rude or irritating without me even noticing. I have a really hard time understanding social cues and never really know when it's my turn to talk.
Also, I hate small talk. Like, why do people do that? There's no information transfer whatsoever. And why do we have to stare at each others faces? I get that it's supposed to create some kind of connection, but hell is it distracting to me. Maybe that's why I prefer deep conversations and walking side-by-side while talking.

By far the most challenging thing are group situations though. I cannot filter out the important stuff and end up "listening" to all conversations in parallel. Some might say this is a superpower, but I can ensure you it's not. In very loud environments, I can't even follow what the person next to me is saying.
Generally speaking, I prefer deep, 1-on-1 conversations in quiet places.

Most of my social scripts run on autopilot and I don't have to actively think about them anymore. Like smiling, pretending to maintain eye contact, nodding or occasionally throwing in small cues like 'oh', 'yeah', 'aha', 'hmm' to indicate that I'm still actively listening. This can go as far as me laughing at a joke that I don't even think is funny.

Finally, something that's universally true in all social situations is my tendency to be hyper-aware of myself and my surroundings. I always check my body and posture, track movements around me and actively analyse the person I talk to and the conversation we're having. I always need to feel safe and usually prefer sitting in corners or in front of a wall.

Sensory

When it comes to sensory issues, there are some universal things that are true for all sensory experiences. Autistic people tend to be hypersensitive and easily overwhelmed by intense sensory events, especially if multiple senses are involved. I can get very distracted, having a really hard time to focus on something. After all, there's a reason why many of us use noise cancelling headphones and prefer quite and calm places.

That said, sensory issues aren't consistent. On good days, I can tolerate most things just fine and on bad days, e.g. when sleep deprived, stressed or in bad mood, I can shut down in an instant. This also affects the intensity of sensory experiences. Sometimes I barely notice them and on another day the exact same thing is literally unbearable.

Some things can make me feel very upset. Not necessarily in a disgusting way, but more of a general feeling of unwellness. In addition, I also sometimes experience sensory impressions that go beyond the established five senses and feel more like a combination of those. It's hard to describe since there are no words for that, but imagine you could "feel" noise or a smell. Since most sensory experiences are very distinct though, I'm going to split them up and talk about each individual sense:

• Auditive:
  Let's start with auditive. This is definitely the most prominent since we live in such a noisy and loud world. As I mentioned before, I can't really filter out the important stuff and thus end up overwhelmed quite frequently. On the upside, that means I have very fine hearing and a really good pitch perception, but the negative experiences unfortunately outweigh the benefits.
  For example, I can't tolerate high-pitched or loud noises such as babies crying or firecrackers going off. Also squeaking sounds like tires, trains, chalk on a board or text marker on paper drive me crazy. I hear my own heartbeat all the time and sometimes even hear my blood flowing in my arteries. Generally speaking, everything that's unexpected or out of my control is very much uncomfortable.
• Visual:
  I would consider myself rather tolerant to visual impressions, but I'm still frequently overwhelmed by certain things. For example, bright and/or flickering lights are really hard to handle. Also patterns such as stripes or chess boards are very irritating, especially if they have high contrast or are very detailed.
  By far the most frightening are sharp objects though. Starting with needles and knives, all the way up to poles and chair legs. Please never point any of those in the direction of my eyes.
• Olfactory:
  There's almost nothing that really upsets me in terms of smell. The only real issue is cheese, especially Parmesan. Too much perfume or hairspray can definitely be annoying, but not really problematic. One interesting finding however, is that each body part smells totally different to me. I always thought that's normal, but turns out it's not. Weird superpower, isn't it?
• Gustatory:
  On to our good old tastebuds. Similar to smell, there isn't really a distinct taste that I dislike. Actually, if at all it's not really the taste, but rather the texture. For example, I can't really stand slimy things like pudding or apple sauce. Oh and who thinks it's a good idea to put ketchup on fries directly?
• Tactile:
  Finally, let's talk about tactile issues. Next to auditive impressions, this is definitely the most challenging one. I can't really tolerate any other fabric than pure cotton and still frequently find myself irritated by clothing in general. I hate jeans and anything that's too tight, particularly around my neck.
  I hate wet things, especially if my hands are dry, and even the smallest particles e.g. fine dirt in our bed can drive me crazy. Also all kinds of sponges and foam materials such as polystyrene.
  Generally speaking, my skin is very sensitive and I hate unexpected touches by others. To me, that's a mild form of crossing boundaries - even though I know it's usually not on purpose. On the upside, I get immense pleasure from consented, intimate touch.

Going Forward

I could probably go on forever, but I hope that you have a somewhat clearer picture of how it feels to be me now. Before coming to an end, I want to quickly touch on what this all means to me and what is potentially going to change in the future.

First of all, nothing is really going to change. I'm still the very same me and being autistic is just another facet of my identity. To me, it's not about being autistic or not, but about individual strengths and weaknesses that make up each person.
That said, probably the biggest learning for me is that I am, after all, disabled in certain aspects and that it is unrealistic to have the same expectations that I have for others.
It's not an equal game and I will try to listen more to my needs and put less pressure on myself. Being able to step up for my myself isn't really one of my strengths, but I will try it anyways.

I also want to try to put my mask down and be a more authentic version of myself, even though I know this is going to be really hard since I've trained myself to do so for over three decades. This includes embracing certain stimming techniques and even finding my very own style.

I now think about neurodiversity, disability and inclusion in a totally different way. There are so many low-hanging fruits to make the world more inclusive and more diverse and I want to make those a reality wherever possible.
For example, why don't we dim the lights, reduce background noise or establish speaking lists for group discussions? I can imagine that not only neurodivergent people would benefit from that.

Further Reading

As promised, I want to share some extra resources. Luckily, there are many good books on the topic today and a ton of great websites to explore.
The only real plea I have is to stay away from everything related to Autism Speaks (new tab).

Books

• Unmasking Autism by Devon Price (new tab)
• The Autistic Brain by Temple Grandin (new tab)
• NeuroTribes by Steve Silberman (new tab)

Websites

• Embrace Autism (new tab)

Self Tests

• Autism Spectrum Quotient (AQ) (new tab)
• Ritvo Autism Asperger Diagnostic Scale - Revised (RAADS-R) (new tab)
• Camouflaging Autistic Traits Questionnaire (CAT-Q) (new tab)
• Aspie Quiz (new tab)