8:44pm January 10, 2015

On being autistic in a speech-obsessed world.

You are a young child, and in this universe the large majority of people communicate by writing words on paper. Unfortunately for you, your natural method of communication is by speaking.

When you speak, no one seems to understand what you are saying. They seem confused, embarrassed, and even angry when sounds come out of your mouth. Your mother publically laments your inability to communicate like the majority. The older you get, the more obvious your difference in communication becomes. People begin to shush you, place their fingers over your mouth, or even duct-tape your mouth shut when you speak. When you enter kindergarten you spend entire school days being taught how not to laugh, exclaim in delight, speak your teacher’s name to get their attention, or blurt out answers to questions vocally.

Your parents and therapists spend hours and hours pushing a pen into your hand and forcing your hand to the paper, withholding praise and affection until you do. But while writing comes so easily and quickly to everyone else, you find it nearly impossible on your best days, and an insurmountable challenge on your worst. Along with a different natural method of communication, you have a motor disorder that affects your ability to hold a pen and write. While other children your age are scrawling out long lines of chatty dialogue, blowing through page after page of paper, it takes you six months just to eek out the letters of your first name.

But you try, and you work at it— as if you have any other option. You learn to stay quiet, to not laugh or sob aloud, to put pen to paper instead of expressing yourself with your vocal cords. You find a system that works for you and your motor disorder, and although it takes longer, you find that you can communicate by carrying around index cards and using one card per letter.

This means that you are constantly carrying around a backpack weighed down with packs and packs of index cards, which tires you out. Sometimes you drop your cards, or lose a few, and often people will get impatient watching you lay out your lines of letters to make sentences and walk away before you can answer their question. There are still some days where forming letters is too difficult, or the wrong letters come out.

But by the time you’re a teenager you’ve done it— you can, in your parents’ words, “speak properly”, and your parents are thrilled. Never mind that, out of ease, you often reuse the same cards over and over, even if those words don’t exactly apply. Never mind that you’ll answer “no” because it’s easier to write than “yes”, or that you’ll avoid answering at all because pulling out your index cards is such a pain. Never mind that other people’s pens move so fast across their notebooks and their words are printed so small and close together that you struggle to understand half of what anyone says to you. You can print at all, and that’s enough.

You don’t know that there are other ways. You don’t know that some people like you speak by typing onto a computer or a tablet, until one day you see the technology on a sappy news story about a young non-writing child, a child like you once were. The realization stuns you. No more fumbling with index cards, watching in despair as they catch in the wind and scatter while people look on in pity or (worst of all) laugh! No more forcing your hand to squeeze each and every hard won letter out of a pen! With that technology you could have entire conversations, order your own meal, ace a job interview!

When you explain the technology to your parents and beg for the chance to finally, truly express yourself, they deny you outright. No, your mother scrawls slowly, that’s for people who can’t write at all. You can write just fine! You almost seem normal now! We didn’t pay for thirty hours of therapy a week for six years for you to throw down your pen and give up.

- From this post of mine. I liked this bit so I made it a post of its own.