Living under autism

Living under autism

2020 April 2613 min read

Till a couple of years ago I thought I came from a normal family. You know, the one you think everybody else has. Somehow I knew this was not the case, but I always thought it wasn't my family but me who was weird. Not that I'm socially awkward to the point where people don't want to be seen with me, but I always feel on edge. I never feel quite there in the moment, not really free to be myself.

Then my brother "finally" moved out of my moms house, my dad died several years earlier. My brother had his own floor and lived there with his girlfriend, until they couldn't take it anymore and found their own place to live. Sounds normal right, well wait for it. It was then that my mom started feeling lonely and depressed and finally went through the whole mental health machine. Result: ASD (autism spectrum disorder).

Wow, that was surprising, at first. But than slowly everything started to make sense. All the pieces of the puzzle we didn't even know was there started to show itself and come together. I think since then about 3 – 4 years have passed and still everyday new pieces show up. Especially after my personal crisis, everything is starting to make sense. It wasn't me, it was them.

multicolored decorative tiles

What is it like

It's hard to explain what it's like growing up with what I now suspect were two parents with ASD (autism). My mom has been diagnosed, my dad, as said, isn't alive anymore. But hearing the stories my mom tells us and looking back through this new lens, it is almost undeniable. He had it too in one form or another. It is called a spectrum for a reason. You don't have to be a stereotypical autist, collecting pictures of trains.

You are not allowed to say what you want to say

Obviously I'm reconstructing this 15 years later, so I probably don't remember everything correctly. Which brings me to the first and most damaging thing I suffer from to this day. I always apologize beforehand for what I'm about to say or do. I will apologize for what I think even. I always think multiple steps ahead before I say or do something, meaning I can't be spontaneous.

When you grow up with people with autism, you just can't do those things. And being your parents, they also don't explain that they are not normal. That you can behave differently with other people. Every time we (me, my brother and my sister) did something spontaneous, something children do often, we were frowned upon. So you learn: I have to be predictable. Don't surprise them.

The same goes for speaking your mind. They don't see that you're opinion is an opinion. It has to be a personal attack. So you learn to always say in advance that it is "just" a thought or opinion. Or worse, you don't even bother and keep your mouth shut. Especially when you enter territory where they have a strong opinion, yours just doesn't matter. It can't exist.

They will never say or admit that literally. They will say things like "I can never do it right" or "I meant well". To a child this means: "You are not allowed to say such things, can't you see they upset me?" Thus learning to always take every possible negative interpretation into account. Let me tell you, that is exhausting, because there are an infinite number of interpretations. It creates a continuous state of low-level anxiety, a nervousness that someone is going to condemn your words, your opinion and thus your thinking.

You don't learn to control your emotions

The title might suggest I'm an unstable guy, but that's not what I mean. You learn to control your emotions yourself. As a child. There is no parent who explains how you should deal with anxiety, anger, sadness, joy, fear, love, shame, etc. (I had to Google by the way, because I couldn't think of much more than 5.) Even worse, it's the other way around. You learn to control your emotions, so you don't upset your parents.

My dad was always really calm, at least that's what I can remember. My mom would always try to "fix" our emotions. Make them go away. Obviously she meant well. She didn't want us sad or angry, but it always felt like she wanted it more for herself.

Anyway, we never discussed feelings and emotions. We never described them and learned to deal with them in a healthy manner. What do you do when you're angry? How do you cope with sadness? I don't know. The only thing I know is to make them go away. That currently leaves me with very few words to describe my feelings. I feel uneasy, but have no idea why or what it is.

Whereof one cannot speak, thereof one must be silent

Wittgenstein

As Wittgenstein said in "Whereof one cannot speak, thereof one must be silent". If you don't have the words to describe something, you cannot know it or understand it. The same goes for taste and smell. I am always amazed, and at the same time feel very stupid, when people smell and taste their food or drinks and say what they smell or taste. I just can't. I can do taste good, very good, iew and don't like it.

If I try really hard, I might taste chocolate in my espresso. But somebody else has to tell me the espresso is sour. If I try really hard I smell basil and oregano and thyme. Somebody else has to tell me what's really in the dish.

Risks and being assertive

Obviously when you always have to consider every possible (wrong) interpretation, you learn quickly that you don't take risks. Stay with the tactics and tricks that work. If you take a risk, two things can happen, it doesn't matter if the result is positive or negative:

  1. They don't understand why you would even try and scold you for it.
  2. You don't know how to deal with the joy and pride (positive) or the grieve and sadness (negative) and they just can't help you and go to point 1.

This means I never learned how to deal with setbacks as they just didn't explained it to me. When something went awry, they would step in and fix it for me.

I remember multiple occasions where I had to do a presentation in primary and secondary school. I would become so nervous when I had to prepare it, I would literally freeze. I would sit in my room staring to a piece of paper for hours and nothing would happen. That was until my dad stepped in and wrote the presentation for me. He didn't ask me why I was so nervous. He didn't try to explain that it was normal and how I could deal with it. No, he would just go away and come back an hour later with my presentation.

Another example would be my mom who was so afraid we would be bullied at school that at the slightest hint, she would "threaten" to call the school. Which obviously makes it worse. A kid who can't speak up for himself, but needs his mommy… She would relax if we said it was okay and nothing had actually happened.

Things are fixed for you and that leaves you with totally unprepared for when you need to be assertive, I never learned to stand up for myself or when you actually need to take some risk. Try dating without taking risks. I was 23 when I had my first kiss. Something that sounds much more romantic than it was. I wasn't prepared for it at all. The amount of sex-ed I had… well, zero beside the condom I got when I was 16 or so, without any further explanation than to use it when you know…. Anyway, I didn't dare to tell anyone or her. What if people would actually find out I was weird.

In hindsight

Now that I slowly start to find the words for it, a lot of things start to make sense. Thanks to my girlfriend who is in the same boat. I can now say it feels like you're raised in a golden cage. As long as you do, act and say the right things, life is great. But as soon as you say something that is not understood, you're dismissed. Not literally, but if you're told your opinion, thoughts, words don't count, it definitely feels that way.

It feels like you're a puppet behind a door, in a closet. A thing they can take out when they want to. For example, my mom never asks how I'm doing. Well she does asks this exact question, but she doesn't complete the conversation. It's like this:

  • Mom: "Hi Joep, haven't heard from you in a while. How are you? Are you safe and healthy?
  • Me: "Hi mom, yes we're safe and healthy. Thanks for asking. We're very busy with our company, so we didn't have time to let you know."
  • Mom: "That's good to hear."
  • ...

That's it. Nothing happened. She just left the conversation without telling us how she was doing, or what she was up to. It's like she just wants us to reassure her. Her anxieties and insecurities have to go away. Ours don't matter as long as they don't bother her. So don't tell her you're not feeling well.

It's like they see you as a video game character. If you try to tell them how you feel, or what's bothering you they are completely surprised. "Huh what's happening, can that thing think and say things I don't want to hear?" But I didn't tell it to do that. When I start a conversation with my mom and tell her something is not okay in my life or I have doubts or insecurities, she just starts talking about herself and her issues.

My mom understands?

Looking back, we never really played with our parents. The three of us would always play alone or among each other. We never did things with them. They were always busy with their own stuff. With that I literally mean their own. My dad was in his room with his music and his perfectly ordered LP and CD collection, nicely archived in his little notebooks. My mom was in her room sewing clothes.

I discussed this with my mom once and she said confirmed this was all true. I was completely right about it and she didn't even denied it. "We didn't know how to talk about things and I didn't know you needed it." She said she understood I might have missed things, but "I have tried my best and did everything that I was being taught and told. Probably those things have changed now, but back then I did everything right".

Oh well, I guess you can't have it all in one day, right? At least I finally took the risk to confront her and she at least listened. But the next day I received countless pictures of my happy "play" times with mom and dad. "See, you were a very happy child and we did play with you". I was 0 maybe just turned 1 in all of those pictures. And one struck me specifically as it had a note saying: "this is laughing, not crying". It was obviously laughing…

I discussed this later with my brother and when I did, you could hear something fall into place. "Ah, that's why she said: "first Joep and now you are also mad at me"". She told him we had to accept her for who she was. She couldn't be blamed for her ASD. At first I thought, well that's true. It's pretty unfair to hold it against her as long as she accepts us the way we are (which is obviously not possible). But I changed my mind on that. I don't have to accept anybody for who he or she is. If I can't accept you, I don't have to.

And now

Well, to start I'm not accusing or blaming my parents. As my mom said, they did their very best and they didn't choose to be like this. But, that doesn't mean I didn't miss things or that didn't leave me with issues today.

I'm always, and with that I mean always, sensing the room. Is someone uncomfortable? Did I say something wrong? Can I fix it? I do that always if I'm not alone. Heck, I do it even when I'm alone, because I might say or do something later, or did or said something earlier, that might upset someone.

As I'm writing this I'm constantly thinking how this might (well it will) hurt people. How can I explain that I don't mean to hurt anybody? Should I choose different more nuanced words? Which is almost impossible if your vocabulary is small. Writing this took me half a day, where others probably write a similar amount of words in an hour. It's exhausting and quite frankly I'm done with it. This is what I feel and I'm not going to hide it any longer because other people can't take it.

Does that all make me a sad and pitiful? Do you now have to feel sorry for me? Please no. Not again! I'm a grown man who can take care of himself and his emotions. I don't need anybody to help me or take my emotions away again because they can't cope with them. I also don't ask people to understand. You can't if you haven't been there.

Let me give you an example. My sister was staying at my mom's for her birthday but voluntarily flew back home to Spain where she knew she would basically be placed under house arrest. This was during the start of the Covid-19 lock downs. Imagine yourself choosing house arrest over staying in relative freedom with your mom.

So no, I don't ask for understanding. Just be open and sympathetic to my story. I just want to be heard.


If you are interested in this topic or if you have been through it yourself and want to talk or read about it, go to https://www.kindvanauti.nl/ in The Netherlands or https://aspar.wordpress.com/ in the US.