How does it feel, to live in my “own world” ~ Renata Jurkevythz

A very common statement people make about autistics is how they “live in their own world”. For non-autistics it can very much look like the person is locked in, in a parallel world, not acknowledging what goes on around them. For each individual on the autism spectrum, this “inner world” definitely feels different and may have an effect on their interactions with the world around them. Here, I want to explain my personal experience of being in my inner world. Some may resonate with my personal experience and for others it may be completely different. But as human beings, we are all unique, whether we are autistic or not.

With that said, I want to explain about how this experience feels to me, to live in my own world. I live in a wildly different world, even though I appear to “function” very similarly to people outside, therefore not looking so different in their eyes. My reality feels like being an alien of sorts in a constant struggle to understand and adapt to this weird planet I was put in. I know this analogy is so clichéd, but it is the perfect explanation. The thing is, even when I’m doing regular everyday chores, I’m focusing really hard on keeping myself in the “outside world”. Some days are easier, some days are harder… My inner world is an all-powerful gravity force that keeps trying to pull me in, every second of every day.

The most striking characteristic of this world of mine is that it’s busy. Very busy. The main reason why I have to struggle so hard to focus on the world around me is because the one inside me is so loud! There are too many things happening and they are all too intense while all at the same time. It feels like there is a dinner party in my head full of philosophers, scientists and psychologists. They are constantly debating very passionately, loudly, and at the same time the reasoning behind everything; theorizing about the outside world, human nature and the universe. They never stop. There is an old movie from Luis Buñuel called “The Exterminating Angel” where people are in a party that never ends, and they start getting desperate because they want to go home but can’t… The movie has a very strong political and social message that doesn’t apply here, but the feeling I get is exactly like these people. When is it going to be over? Can I just rest now? But it just goes on forever and ever.

I know it sounds very chaotic from the way I’m describing it, but my party is actually a good one. I absolutely love to theorize and think, think, think. The problem is, I also have to live in the external world. There are routines, people and places outside this party I must attend to. So one could say the rest of the world would be the problem. But there is no alternative other than living in this physical world, plus I love the many people and things about it, as difficult as it may be. So I do my best to live in both.

I really understand how others just can’t or simply won’t accept living “outside” though. It is not easy and is a big commitment. More often than not everyday tasks become so hard. It is like a computer with too many programs opened and running, but when you try to open a new window, it just can’t handle it anymore—it just keeps loading and loading. I need to plan hard. I need to imagine everything in advance, get prepared, and rehearse situations in my head because anything that happens outside the plan requires a great amount of dexterity from me to be able to react on time.

Continuing with my metaphors and analogies (I just couldn’t explain things clearly without them), imagine walking in the streets with earbuds in, listening to your favorite songs, and then suddenly somebody stops you and asks “Hey, what is the square root of 1296?” Yes, it feels that jarring. Too many times people come talk to me and I get that “?!?!?!?!?!?” expression on my face. I imagine everybody would react the same way if they felt how I feel. Sometimes I can react quickly, other times I’m just completely clueless. All I can do is try and do my best to not show how off I am feeling.

But it is not always a problem or struggle all the time. Sometimes, something incredible happens: my inside dinner party themes meet my outside world necessities. When that happens, it’s magical. When I have to do or talk about something related to whatever is being “discussed” in my head, I can achieve incredible things. I’m efficient, focused and creative. I’m full of energy and nothing can stop me. I can come up with the best ideas and solutions to problems. It feels so great. It’s in these moments I feel a sense of belonging. As if everything is right, everything is in its right place.

My goal is to try and find these moments, to try and match both worlds to produce something. To contribute and feel complete and part of both worlds. These are the moments when I am truly happy. They make me realize that no matter how hard things are, they are indeed worth it.

About Renata Jurkevythz

I’m a 36 years old recently diagnosed Aspie. Married to a neurotypical for 15 years. Mother of three – a 10 year old Aspie girl, 4 year old classic autistic boy and a little baby boy. I found out about my neurology last year after my son was diagnosed and I started to dig deep into autism. Then my daughter’s diagnosis followed. We are a unique, happy bunch and try to make the best of what we have. We see different brains as just different, all with positives and negatives – there isn’t a wrong one! We are from Brazil but recently moved to Germany. My special interests are writing, learning languages, games and movies. I also love forests – they bring me peace. Things that make me instantly happy are the sound of singing birds (specially Seagulls) and children laughing.

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