Not as a superpower. Not as a tragedy. Just as me.
I didn’t get my diagnosis in a dramatic moment. I got it after I left my best friend’s birthday party at 8:30 PM without saying goodbye.
Everyone was in the kitchen. Music on, three conversations at once, someone asked me something about work and I could feel my face getting hot. I said “I need air”, walked to my car, sat there with my hands over my ears and cried because I felt like a bad friend.
That was three years ago. I was 31. A week later my doctor said: I think we have been looking at the wrong thing.
These are the 5 ways I see myself since then. Not the pretty version.
1. The one who often leaves early
I used to think I was good at social things because I could do them. I can make eye contact. I can ask the right questions at a party.
What I didn’t see was the price after.
Last month I was at a family dinner. After two hours I couldn’t follow the conversation anymore. The words became noise. I went quiet. My partner later said: “You looked angry.” I wasn’t angry. I was full.
I have left early from weddings, birthdays, work drinks. Not because I don’t care. Because if I don’t leave, I crash later and I am not a nice person for two days. I am still learning to say that out loud instead of making up an excuse about being sick.
2. The one who hears too much and sometimes snaps
I can hear the fridge at night. I can hear my neighbour’s washing machine through the wall. I can hear the electricity of a charger.
The worst moment was stupidly small. My partner was stirring soup and the spoon kept hitting the pan. Ting, ting, ting. I asked him to stop. He didn’t hear how loud it was. I snapped. I said something mean about him doing it on purpose. He didn’t.
I am not sensitive in a poetic way. Sometimes I am just irritable and unfair because my head is too full of sound. I don’t feel too much empathy in that moment. I feel too much noise and I make it someone else’s problem. That is also part of my autism.
3. The one who needs that extra day that I didn’t plan
If I have a busy Saturday with people, I need Sunday to be empty. Not quiet. Empty. No plans, no messages, curtains half closed, same food as always.
For years I lied about it. I said I had a headache. Now I say: “If we do Saturday, I need Sunday off. Not because of you, but because I know how my system works.”
People think that is rigid. It is. But without that extra day, I don’t recover. With it, I can be present again on Monday.
Writing is part of that extra day. I often can’t explain in the moment why I am upset. I go blank. Then at midnight I write 800 words and finally understand what happened. That is why I blog at Tistje & co. Not to inspire. To repair.
4. The one who makes others pay for my patterns
I like patterns. Same morning routine, same shop, same route. It gives me calm.
It also makes me controlling.
Last year we had to change a restaurant last minute because it was too loud. I had already looked at the menu, the parking, the route. When it changed, I got angry. Not a little irritated. Really angry. I ruined the evening because I couldn’t let go of the plan in my head.
My honesty is also like that. I thought I was just direct. Sometimes I am just blunt and I hurt people because I say the thought before I check if it is useful.
The price is not only mine. Other people pay it too. If I only talk about the good parts of autism, I lie about that.
5. The one who is still building his own words
There are so many scripts for how to be autistic. The medical script. The superpower script. The activist script.
None of them fit me exactly.
So I write my own. Not big theories. Small, true sentences. Like: “I left early because I was full.” Or: “I need you to text me the plan instead of calling.” Or: “I snapped because of the spoon, not because of you.”
That is not a brand. That is language that actually works in my real life.
I don’t see myself as someone who learned how to be normal. I see myself as someone who is still learning how to be autistic in a way that is honest, not just likable.
I am not cured. I am not better than anyone. I am just done pretending that I am easy.
If you left a party early and sat in your car too, you are not alone.
