The World According To Me

14 Aug
August 14, 2013

 

It’s My World

Sounds completely narcissistic, doesn’t it? I can assure you, it’s not. I want to talk to you about what the phrase ‘It’s My World’ means to me, and it has everything to do with my being Autistic and nothing to do with me being self-centered. Well, not self-centered in the generally accepted sense. Before I get started, though, I want to address the often-heard phrase:

Autistics are in their own world.

I’m not saying there’s not some truth to it, I know I enjoy time in my own little world and so do my two Autistic kids. However, I don’t consider the idea autism-specific. I’ve found a lot of people have their own little world they escape to from time to time. My youngest daughter, who is not Autistic, spends quite a lot of time in hers. And J? Please. That man takes the concept to another level and owns it. In a silent room, he’ll blurt out the last three words of what I’m guessing was an intense conversation taking place entirely in his head. Then look at me meaningfully as if I know what he’s talking about.

I just stare at him.

He then either shares the thought, or goes back inside his head where his half-baked notions are considered not only plausible, but noteworthy. And for those of you just joining me, J is most certainly not Autistic. Long story short, I think most people need an escape, Autistic or not, and what’s more perfect than our own little world set up and running exactly as we see fit!

  • Sorry I derailed the train for a moment, but I wanted you to understand that when I’m speaking of The World in this post, it is of the world around us. Our environment. The Earth. Not ‘my own little world’ as mentioned above.

Okay, so you’re not a narcissist and you’re not self-centered and everyone has their own little world, but that’s not what we’re talking about. So what ARE we talking about?

The World According toMe As Dictated by…

THE ROUTINE

In my last post I mentioned that upcoming events, even festive ones such as parties, seriously disrupt my routine. We all have routines in life, no matter our age, right? I mean we have new Mommies talking about getting newborns ‘on a routine’ and with good reason: To cure infant-induced insomnia and sleep deprivation! So routines are a good thing. They help us keep things in check and supply us with much-needed order. I think it’s safe to say most people set up routines in life to operate more effectively. And I am the first to admit that when speaking of routines

I skip the level-thing and take it to another universe.

My routines are set monthly, weekly, daily, hourly down to the minute. I have lists, marked-up calendars, notes and email reminders. I will also at any given time recite my routine aloud for anyone in earshot just to make it more concrete. This is also to make known, lest someone forget, that my day is planned, my routine is set and it would be in everyone’s best interest to nod and smile. Perhaps even compliment me on my planning abilities.

Do Not disrupt my routine. DO NOT.

I do not go with the flow and I need to be in control of my situation at all times and, whenever possible, my environment as well. I must know all possible outcomes and have been known to speculate over said outcomes for days. Days. Not kidding. So what does a disruption in my routine do to me?

Stops me dead in my tracks.

Doesn’t matter how small it is. It can be a change in pick up time for one of my kids:

School: Mrs. Salas can you pick up your daughter at 12:30 instead of 1:00?

Me: Of Course! (smiling on the outside, already panicking on the inside)

A 30 minute change, no big deal. A slight shift here and there and it’s all taken care of. Right?

Wrong. I now have to re-work my entire day. Even the stuff in the evening that shouldn’t be affected needs to be reconsidered.

And it goes a little something like this…

Just plan to leave 30 minutes earlier and be done with it.

  • No, I now have to take into consideration lunch-time traffic

Okay, so leave 45 minutes early

  • There’s no good parking next to her school and if I get there too early, I’ll have to circle for 15 minutes or more.

At lunch-time parking spots could open up on the street.

  • Due to my extreme difficulties with visual-spatial awareness, I can’t parallel park

Okay, so we’re back to leaving only 30 minutes early

  • Well I can’t be late because she would be left standing on the street by  herself

Ugh…

I know, right?! Frustrates the hell out of me, too (not even going to tell you how J feels about these conversations – that will most definitely be another post)! And what you just witnessed above is the abbreviated version and only addresses the question of departure time and the schedule of one person. It doesn’t take into consideration the fact that I have 2 other kids with different schedules. And then there’s my schedule which encompasses theirs and at some point I’m suppose to carve out some time for writing and blogging since I work from home. Also, if I could catch a moment to do the laundry, cook dinner and help with homework, that would be great!!

I’m not complaining about what needs to be done. On a normal day, it’s worked out to the minute, no worries. And we all have hiccups that require adjustments to our routines, I’m not under the impression that I’m the only one that experiences this. However it’s my inability to handle the change without feeling:

  • Panicked
  • Put upon
  • Frozen
  • Stressed out
  • Pissed off
  • Frustrated
  • That there’s a knot in my stomach and I’ve lost the ability to move forward

When these unexpected changes occur, no matter how small, I have moments in which I literally stop moving and stand still. Doesn’t matter where I am, it’s not a comfort thing. I don’t go to a cozy chair or a quiet corner to sort things out. I can stop mid-motion in the middle of a hallway, bombarded with so many thoughts, questions, suggestions and ideas that it feels as if I’m thinking absolutely nothing.

*** white noise ***

If I’m Not Self-Centered, Then Why Is It The World According to ME?

Because if it is not the world according to me, then it’s the world according to everyone else. And that makes it unknowable. Unpredictable. And scary as hell. And I don’t mean I’m scared something bad will befall me like, I don’t know… a sprained ankle or a fender-bender or something (because if I knew those things in advance, I could handle them). It’s the fact that I don’t know if and when something will occur, or even what the something might be, so I can’t prepare.

It’s one of the reasons I never leave my home just to get out. If I leave my house there is a purpose. A plan. It is part of my routine. What would happen if I left without a purpose?

I don’t know

Would it be something bad? Something good? Nothing at all?

I don’t know

And that’s the crux of it. That teeny tiny phrase, I don’t know, begs an infinite amount of unanswerable questions. And that’s not acceptable because I have to know everything all the time. And if I don’t? I at least have to know enough so I can speculate 2 or 3 probable outcomes, so whichever occurs I will be prepared. And I’m good. Rarely do I encounter a situation that does not end in one of the outcomes I’ve planned. I’ve been pre-planning and speculating my life and creating My World since I was a toddler, as I would think most people do. The difference is I must be in control of outcomes. My world cannot be flavored with unexpected surprise or careless spontaneity. It  has to be experienced on my terms:

Predictable and Perfect.

How’s That Working Out For You?

Ha ha ha. Good one! Some days better than others and rarely ever perfect. But I am an intelligent adult with decades of life experience. I understand that the predictability and crystal ball-effect I so crave is an illusion, impossible to obtain, so I do the best I can. I always move forward after being caught at a standstill - usually rather quickly - because that’s the only logical choice. It takes a lot of self-coaching, note-writing, list-making, etc… but it works for me. And I tell myself over and over that I’ve always figured out solutions in the past and will continue to do so well into the future. Because if I cease my forward motion and choose to stand still once and for all, then it will no longer be

The World According To Me

 

4 replies
  1. M Kelter says:

    Very well put, so many great points here…i particularly like your deconstruction of the concept of “being in your own world”…i think people perceive autistics as locked away in a mental room, and it can be a very damaging stereotype. As you say, many people, on and off the spectrum, have their “own worlds”…and many people on the spectrum seek connections, social engagement, but at times struggle with the social mechanics. anyway, down with stereotypes…as your post demonstrates beautifully.

    Reply
    • srsalas says:

      Thank you, and I couldn’t agree more: “down with stereotypes…” :) And thank you for the Twitter follow, by the way, I look forward to your tweets!

      Reply
  2. mark blakey says:

    As ever, a very well written post illustrating the world of Autism. I think your posts are useful for people both on and off the spectrum.

    Reply
    • srsalas says:

      Thank you, Mark, I really appreciate that!! btw… I was looking for you on Twitter and FB… are you not there?

      Reply

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