Saturday, October 31, 2009

Feelings, my way

What follows is part of a letter to my mom that we read and talked about at a therapy appointment today. I'm sharing this because even though in the culprits were my parents, the truth is that almost everyone does it at some point. You decide that we're going to play a game, only you never tell me we're playing. You confer with the other players and decide upon all the rules, but you don't tell me what they are. And then somebody says "go," but it's always out of my earshot. That's the way autism works. I want everyone to know that, at least for this autistic person, I'm not interesting in games... I like things to be very straightforward. I want you to know that, even when I seem like one, I'm not a selfish jerk. I want you to know that I do care. That's why I'm sharing this.

"I often feel like I’m playing a game with you where I don’t get to know all the rules. For example, the other night you guys expected me to feel sorry for “putting you through all this.” I was entirely preoccupied with trying to stay alive. Because I only feel one emotion at a time (ever), and right then I only felt anxious, I was not feeling sorry. I was completely confused when you were upset that I didn’t feel sorry. How could I feel sorry when I was feeling anxious? It’s extremely frustrating to find out after the fact that I was supposed to say or do or feel things. It’s like you get a rule book and I have to learn as I go. You always seem to interpret my way of being in this world as being self-centered. Maybe it’s not. Maybe I think about you and your feelings and wellbeing far more than you know, but because I don’t show it the way you do, you just don’t know that. Maybe you haven’t thought to ask how I show it. Rather than assuming that I’m being self centered because I don’t immediately greet you upon your entering the house or because I don’t apologize for “putting you through this,” sometimes I wish you would look at the way I live in the world and realize that I have never been ungrateful or uncaring. I just feel things very differently than you do, and show those feelings even more differently. Sometimes I don’t know how to show it at all, but it has never not been there."


  1. Asking would be a good idea for the people who want to know. Sometimes they haven't formed the questions!

  2. Over the last few days Bear has had me up at 2am, 5am and not gone to sleep until nearly midnight. I was really starting to suffer with the lack of sleep. She took me to her room and made me lay down on her bed - I was absolutely not allowed to move. Any time I tried to lift my head she pushed it down. I had things I had to get done but I gave in, just lay there resting and your words in this post came floating in my head "just because I don't show it the way you do doesn't mean I don't care." (not a direct quote, but close!)She cares, she knows. She loves me as much as I love her.