How do you know if you experience the world differently?

The title might seem like a weird question, but I think it’s at the core of why so many adult autistics didn’t have a clue how* they were different until adolescence or beyond. Because if you experience something one way all the time, how are you going to know that your way of experiencing something isn’t how others experience it? Their experience is outside of your experience.

If, like me as a kid, you largely eschew fiction because you think the authors are bad at writing people, can’t relate to any of the characters, and don’t see the point in reading this crap (it was in middle school that I first discovered an author who wrote people who weren’t the stereotypical dolls-and-clothes girls in books aimed at girls and first got into fiction) and you eschew television because high pitched noises hurt your ears, laugh tracks scare you and the frequent changes for commercial breaks annoy the crap out of you (I last willingly watched a television show on cable 7 years ago, just so you have some idea of just how much I hate most TV), you’ll have even less chance to realize how you experience things differently, because you’ve accidentally insulated yourself from the experiences of others.

If you hear from all the adults around you that your perceptions aren’t your perceptions, that you must be crazy or a whiner or a wimp or just looking for attention when you complain about things, do you believe them? Or do you believe your experiences? For a long time, I believed the adults. Adults knew more. Therefore they were probably right that I was just a lazy wimp. After all, everyone else said they found it annoying but just toughed it out. Why couldn’t I? It was only when I started to realize that adults were wrong sometimes (regularly!) and that they could be mean and lazy and so on – in other words, when I started to realize that they were just as fallible as me – that I started to question whether I was right when I exclaimed angrily that they didn’t understand as they ever-so-patiently tried to explain to me that my reality didn’t exist and that I should just shut up about my eyes hurting because nobody wanted to listen to that on a day out in the bright sun, and besides,  my eyes didn’t really hurt, anyway.

I’ve seen some parents lament that their kid can’t articulate how they perceive things differently. I suggest that they should consider that maybe their kid doesn’t know how they perceive things differently. If their eyes hurt because it’s too bright and yours don’t, that’s a perception difference. But consider: Your kid has grown up with hir perceptions for all of hir life. That’s hir normal. How can xe recognize that hir normal is different from your normal? It’s obvious to you how you perceive the world, because you experience your perception of the world all the time. Not to hir. Xe can’t take your brain out for a test drive.

I was 17 before I was able to articulate that everyone else seemed to have received the social skills manual but me. I was 22 before I realized that most people who exercise 10+ hours a week don’t have trouble walking up a hill and realized my asthma had relapsed (this despite a slow creep of symptoms for 8 years). I was 25 before I realized that my senses differ from most people. Think about it – I was 25 before I realized that I wasn’t being a wimp when I jumped, yelped and covered my ears at a feedback squeal. 25 before I realized that I react so much more strongly to stuff like that than other people because I perceive it more intensely. And I’m a person who has largely been painfully aware of the fact that I am different from most people since elementary school.

Realizing where your perception differs from others is hard. I can’t unplug my brain and try yours on for size. You can’t try mine on. That means that for me to figure out how you perceive things, I have only nonverbal cues and narratives that I used to discount out-of-hand as too unbelievable to rely on. Autistic people have a notoriously difficult time with nonverbal cues, and if you don’t trust narratives because they don’t feel real to you…

I don’t really know where I’m trying to go with this, except it feels important in a way I’m having a hard time putting in words. My recent and ongoing anxiety issues are making thoughtful analysis and putting my thoughts into the right words** and those words into type far more difficult than I’m used to. I guess that what I’m trying to say is: Don’t assume an autistic person knows how their experience differs from others but is just unable to put it to words. A lot of us have spent a lot of time being told we’re not different so much that we discount our own perception in favor of what others say is true, and additionally, it’s really hard to realize that others don’t see or hear or smell or taste or touch or otherwise feel the world as you do. The block might be coming at a far more fundamental level – the level of simply not realizing that not everyone finds bright sunlight more painful than a sprained ankle or finds a crowded room fear-provoking, or what have you. Maybe words aren’t where the breakdown’s happening. Maybe it’s happening at the not-realizing-it’s-not-a-moral-failing level.

*knowing that you’re different and knowing how you’re different are two very different things – I knew that I was different from other kids by age 10. How took over another decade to really get a handle on, and even now I’m not sure I grasp the full extent of how I’m different from the allistic norm

**Case in point: Those who read the first version of this post, before I made a few edits, may have noticed a lot of homophone substitution happening – “may seem light a weird question…”, “…bad at righting people…”, “… than I’m used too.” etc. I also forgot two critical sentences. If my word retrieval in type is that compromised, you can guess how bad my speech has been for the past almost two weeks. Anxiety makes everything harder.


7 thoughts on “How do you know if you experience the world differently?

  1. I was diagnosed age 9. I *still* didn’t know that sensory issues were a thing until I was about 16-17, through finding other autistic people on Tumblr. Again, I just thought I was jumpy and pathetic and weak and whatever else. This is the problem with the current rhetoric of mainly describing autism from the point of view of a (neurotypical) outsider. It’s really not on.

    • ischemgeek says:

      Yes, agreed. I still can’t fully articulate what I was thinking about when writing this, but it’s so important that people realize that even though a lot of autistic people have trouble going from thoughts -> words, maybe the breakdown isn’t happening there and assuming it is can do people a disservice.

      Analogy time: When learning things in school, most things came easily to me. Except when they didn’t and then I had a block. And adults were always, “Ask questions to clarify where you misunderstand,” but I didn’t even know where I misunderstood so I couldn’t ask questions.

      If you don’t even know what’s going on, it’s hard to voice it.

  2. Alana says:

    Yes. I had no idea for most of my life that so many of the ways I see things or feel things or know things are different. I didn’t really start figuring out until I started reading some things about autism, and I thought, oh well everyone does that, that’s not very specific, then asked a few of my friends about things like that (for instance, I cannot sit still without consciously thinking about it. Apparently a lot if my friends have no problem doing that.)
    Because these things are happening in your brain and you can’t see inside other people’s brains!
    So thank you for writing this.

    • ischemgeek says:

      I also cannot sit still without a force of will and even then not for long. Unless I’m hyperfocused and sometimes not even then.. My cousins tried to get me to stop fidgeting one day as a teen because I was on the couch with them and my fidgeting was annoying – even with one of them sitting on top of me, I wiggled my fingers and toes to have motion. 😄

  3. autisticook says:

    My dad still gets told by people that it’s ridiculous that he doesn’t like cucumber. Because. Cucumber. Has. No. Taste. He’s 68.

    I think all of us can imagine what that kind of message does to your view of reality.

    • ischemgeek says:

      Like your dad, I dislike cucumber (it’s the seeds). So I get where he’s coming from.

      I eventually got sick of people telling me the way I taste stuff is wrong and started replying in an annoyed voice, “I’m allowed to dislike stuff.” Hilariously, most the the people who were the worst offenders when I was a kid now congratulate me for defending my tastes so assertively. Erm, oblivious much?

      Also, people need to stop telling other people their perceptions are wrong.

      • I love cucumber. And it does actually have a taste. It tastes like filtered water, but a bit more lemon-like, I think (eh… I don’t really have the words for this, but it definitely does have a taste). And I love things with seeds (but I eat them really slowly because I have to bite each seed open before I swallow them).

        I absolutely agree about people needing to honour other people’s perceptions, because a) perceptions are personal, and there’s more than one right answer, b) even if there were one right answer, what makes them so sure theirs is the right one and c) even if theirs is the right one, do they honestly need to rub it in someone else’s face or can they just let other people be happy instead of messing with their head and their faith in their own version of reality?

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