paper republic’s very own Mia Nemčić opens up about autism: how it affects her life, how society can help, and how the act of writing in her journal has solved problems she’s had for twenty years…
You were diagnosed with autism as an adult. How does it affect your life?
It’s nerve-racking for me to even talk about this. Because no one ever asks about it. It's still really taboo. It's awkward and it's not common. It's not small talk.
The best way I can describe what it feels like to have autism is this: imagine a group of people playing Monopoly, and everyone is reading the instructions. But mine are in Chinese. When we start playing, I play incorrectly, and everyone yells at me.
To me, it seems that everyone else is on the same page, but I'm on a different one. I am always ten steps behind. Social life is built on social norms. For neurotypical people, these seem to come hardwired. You don’t have to think about it. But for the neurodivergent population, social norms are not obvious.
For example, if I go to a party, should I be early or late? Should I sit opposite my colleague at the table, or next to them? Should I ask about your day or not? Everyone else seems to be organically onboard with this huge set of behaviours that are required to be seen as ‘normal’, but autistic people didn’t get the memo.
When did you notice these differences?
At school I always had a feeling that something was different. But I wondered, is it really me, or does everyone feel like this? It was only two years ago that I really took the time to find out what was going on, because my behaviours were starting to obstruct my daily life. I needed to find a way to be gentler towards myself, to get to know myself again, to actually know how to behave around myself.
What sort of behaviour was getting in the way of your life?
I was compelled to document everything I was doing. Writing down exactly what was happening every hour, multiple times a day. I was doing so much documenting, that there wasn’t much time for actual living. I was documenting my documenting.
I have learned that it's a way to soothe yourself. Since I cannot control the complex social systems that go on around me, and because I'm very sensitive to new things – mistakes, disruptions, any break of routine – the only way to calm myself is to make sense of it all on paper.
How does writing in your journal help with autism?
Autism makes me feel like everything is constantly uncomfortable. But writing things down on paper gives me relief because it gives me back control. It forces me to be meticulous. It forces me to choose my words; to consider many options then carefully crystallize the thought as an answer.
It needs to be on paper, not digital notes, because paper is tangible. It’s the most permanent way. Yes, I could lose my journal, but if I’m typing something, someone could unplug my computer or wipe my hard drive. That puts me too much at the mercy of others.
I need to be in control of my notes. I need to possess my own information. It’s the same concept as buying DVDs rather than relying on streaming platforms. If you stream, you are at the mercy of the streaming company. They can remove films or terminate your account.
But if you own the film in physical format, it’s always accessible when you want it. That’s why I use my leather journal. I know my notes are safe.
Is writing in a journal to help sooth autism well known to the autism community?
Yes, I think it's quite common amongst those with autism. It feels like the more you write, the more you're trying to solve the uncomfortable. The symptoms that come with autism make everything more uncomfortable, and so you’re more inclined to write.
I think if someone is uncomfortable, they often become a writer, or they journal a lot, or they archive a lot, because you need the system to get your thoughts out, rather than have them continuously cooking in your head. Writing helps bring calm.
Does sketching or drawing in your journal have the same calming effect?
For me, drawing makes it worse. Because it's too unpredictable, too free flowing. It's the opposite of what I want because drawing is too unstructured. I draw when I have a good day. I write when I have a bad day.
Do you ever discuss autism on your TikTok channel?
I did make one video where I gave an overview of autism, trying to explain the spectrum. The comments were really interesting. It was either people asking me for advice about their autistic kids, or people thanking me for giving us a voice.
For women – adult women especially – autism has always been a bit hush hush and many were never diagnosed because we hide the symptoms so well. In the past, a young boy who's nonverbal and self-destructive, was diagnosed with autism. But a girl who only exhibits autism as shy behaviour, is just called shy.
Some parents were saying that “my child is struggling with autism”. But I could hear how much pressure they were putting on the kid. It made me think that it’s not your kid struggling with autism; it’s you who are struggling with parenting an autistic child. The kid is having a blast.
Everyone is trying to fix the kids. But sometimes what happens is the kid just learns to mask the symptoms and then live uncomfortably.
How could society make life more comfortable for people with autism?
Don’t assume that all the little social etiquettes that are normal to you, are normal to us. For example, when we met today, I didn't ask “How are you?”. Because me knowing whether you are having a good or bad day, does not affect your day. So why do I need to know?
Now, I know that’s what neurotypical people have been conditioned to ask and they do it out of habit. But most people don’t actually care about your day so autistic people don’t see the point in asking.
Something else to understand is that some people with autism are less expressive. I can sound very matter of fact, even harsh or cutthroat, and that makes other people uncomfortable.
Even when I celebrate, I never put my fists in the air. I don’t express feelings in the same way. And that makes people uncomfortable, because I seem unhappy or rude. When neurotypical people ask for a favour, they change their tone. We don't, and then we sound demanding. Or it seems like we don’t need help when we do.
I will never forget the time I tried to seek help at a hospital in Zagreb, Croatia. But because I didn't sound like I was in distress, I was laughed out of the building. Autistic people often express less but it doesn’t mean we need any less help.
There’s been a rise in the number of documentaries, films and TV shows that cover either real people, or fictional characters, with autism. Do you think that’s a good thing?
I don't personally have an issue with such shows, and it’s good that autism is now much more well known by the general public. But most of us in the autism community think many shows paint an unbalanced picture.
They tend to infantilise people – for example the 30-year-old who’s obsessed with dolls or dinosaurs – or they show these 'Rain Man' characters, the non-verbal genius. Most people with autism are not Sheldon Cooper.
The general feeling is that we are falsely represented by these shows, which has potential to harm the autism community rather than help us.
Finally, what advice do you have for those with autism looking to use a journal to help themselves?
When I'm journaling it’s because I want to get to the bottom of something. I always want to ask the question that’s gut wrenchingly hard to answer. You need to really look inwards and ask yourself: what questions am I avoiding?
For example, if you are getting angry with someone, ask yourself: why I am getting angry about this?
This can manifest itself in the most seemingly small ways. For example, every time I was on the U-Bahn and the train hit the brakes, some people would lurch or stumble. And that was pissing me off. But why?
So, I wrote down the question in my journal and thought very hard about the answer. I realised it was because I was raised to never make mistakes. So I could never allow myself to stumble. But these commuters felt free to stumble. I was angry because they could stumble and I couldn’t.
But as soon as the answer came out, the problem was solved. Now it no longer annoys me. Using my journal to ask and answer questions, I have solved problems in three sentences, that have been plaguing me for twenty years.
Visit Mia’s TikTok channel (in Croatian) to see more of her videos. And read Journalling as Therapy by Nastya, another member of the paper republic team.