On Invisible Barriers – Perspective Matters

Too often, people make the mistake of underestimating how much a disability, and this is particularly true for hidden disabilities, actually impact a person’s ability to do fairly basic everyday things. As part of this, it is often assumed that just because a person can do something, that this means they have no trouble with it and do it like anybody else. Take my blog as an example:

I am frequently complemented on the high quality of my writing, and I have come to agree that I am indeed a very good writer. But do you know what it takes for me to write posts like this as an autistic person? Firstly, there is an executive functioning hurdle. I have a really hard time switching tasks and initiating new tasks. Thus, it takes a massive amount of energy and is extremely difficult even to get myself to sit down at a computer and get a program open where I can type. Then, I have to quiet my body. This is a term I’ve seen a lot of other autistic people use for various things, and it works well here, so I’m using. My mind has very heavy and complex thoughts and ideas it wants to sit down and turn into words. But my body doesn’t want to sit down at the computer and type words. My body wants to pace around, and swing its arms, and roll and rock on the floor. It wants to run and dance around to the very musical essence of my being. It wants to play with stim toys, and hum, and stare off at whatever catches my eye. It wants to do anything but sit at a desk and type on a keyboard. I am in a constant fight for control with my body. I am fortunate enough to generally have enough control over my body to do the things I want to do. Unfortunately, this is enough that people don’t realize that I am always in this battle.

I calm my body enough so that I can sit and finally write. Unlike most neurotypical people, my thinking style is not already primarily in words. I think in pictures, ideas, raw emotion, and music, with some occasional narration in there when I’m specifically processing language. Thus, I have to turn concepts in my mind into understandable words on a page. Obviously, I can do this, and I do it quite well seeing as, again, I am a very good writer. Sometimes it takes me a long time to think of how to say something, and sometimes it takes much longer (and it is this allowable delay in writing, among other things, that makes me capable of expressing much more in writing than I can verbally). However, all this energy spent writing means I have fewer resources to control my body. So I can only write short amounts of time before I inevitably get up and start pacing, spinning, or sometimes even rolling and rocking on the floor (and this, teachers and classmates, is why I’m getting up and walking around every few seconds while writing an in-class essay). Sometimes I have to spend a good half hour stimming to calm my body for every sentence I write. Sometimes I can get up to a paragraph in one go, but that’s only on good days. Usually I’m somewhere in between. I’ve found that having a lava lamp on my desk that I can look at as well as having something to chew on while I’m writing increases the amount of stuff I can write at once, but only slightly. My writings also tend to be long, as I cannot stand to leave an idea incompletely fulfilled or fleshed out. Right now, this blog averages just under 1,200 words per post, which for me, is a lot.

A stock image of a person typing on a black keyboard.

As such, yes, I am a very good writer, but I am also an ungodly slow writer. Of course, all of this is incredibly frustrating. This isn’t just for blog posts, of course, this applies to any writing, including school assignments. A set of short answer questions from a textbook assigned as homework would take less people under half an hour, but for me they consume almost the entire evening. However, when people read the writing on this blog they will see thought provoking, eloquent, and articulately written pieces and they may assume that that means I simply have no trouble with writing. This is not true of course, as anybody who reads the finished product wouldn’t pick up on the struggles behind it. I love writing this blog, and its something I voluntarily do because I feel I can make the world a better place by doing so. It makes me very happy to see people enjoying and sharing my posts, but I fear that people may take for granted how much it takes to put these words down.

The same goes for speaking as well. I have come to the knowledge and acceptance of the fact that my ability to speak is severely impaired. People who know me will read that and be quite perplexed by that statement. This is because what they hear me say is very articulate. Because of their perspective, they only know of what I can and don’t know of what I can’t. One thing I can do, and am very good at, is speaking about very concrete, linear topics. I can walk anybody through, in great detail and using all of the proper terminology, the transcription and translation process of DNA, or all of the steps to how the cell converts the energy stored in the bonds of glucose molecules into the energy stored in the ATP molecule, or how taxonomy works to classify organisms. I have somewhat of a talent for being able to explain complex biology topics in ways that most people can understand, and for that I’m somewhat go-to for people who need help studying for their bio tests. But if you asked me to describe the conversation I had two minutes ago, or how I’m feeling, or how my day was, or what I thought of the movie we just saw, I will be essentially at a complete loss for words. I cannot communicate these things, and many other things, very well verbally at all. If it’s not a concrete and linear topic that I can visually follow in my head or if it hasn’t been pre-scripted, then I can’t verbalize it well enough for any facsimile of useful communication. Probably 75% of what I think I cannot verbalize in its entirety. I will also frequently simply forget words, like I know what something is but I don’t remember what it’s called, and so I can’t use it until I see it again. These forgotten words could be nouns, verbs, adjectives, or even conjunctions like “because” or filler words like “then.” But people only see me speaking articulately about the things I can, and the only know the words I use and not the ones I have forgotten.

The reason I’ve been thinking about this lately, is that last week most of the Junior class at my school took the ACT. (If you’re outside of the United States, the ACT is a standardized test that colleges use in admissions.) I did not take the ACT with most of the rest of my classmates, because I get accommodations for my disabilities when taking the test, and for whatever reason you have to take the test on the alternate test day, which this year is in June, in order to receive accommodations. Among these accommodations include extra time, a private small room without other test-takers, and probably a few other things. Unfortunately, when I explain that I get accommodations, and as such did not take the test on the regular day, some people react with a variant of “but you’re so smart, you don’t need extra time to get a good score!” When people say this, they are completely missing the point of accommodations.

A stock image of an up-close shot of a person holding a wooden pencil and filling in the bubbles of a multiple choice test.

It’s true that I am very smart, and I expect to get a very good score on the ACT. But these accommodations have nothing to do with being “smart” or not. People make the same mistakes as I described above, and do not realize just how much autism affects me as far as test taking goes. They see me as being smart, and getting good test scores, and assume this means I face no barriers in regard to test taking. This is completely untrue. Because I’m autistic, I have more difficulty processing language, and so it takes me a bit longer to process what a question is asking of me, or what a piece of text means. I am very easily distracted, by any little thing in the room, and so this slows me down as well. My attention span isn’t so great either, so my mind will wander off even when I’m intensely focused, leaving me just blankly staring at the page for the next few minutes. If I get close to the end of a test and feel I don’t have time to finish, I will get very anxious and upset, if anything because of the feeling that I need to finish more so than how it will affect my score. I also have fine motor skill impairments, so I find it difficult to write. It takes me more time on the math section to do the problems simply because it takes me more time to write down the work. Extra time isn’t a matter of being smart or not, it’s a matter of removing the barriers presented because of my disability. Same thing goes with a private testing environment rather than a classroom full of other people, which provides plenty of distractions and I may very well spend half the time with my hands pressed tightly against my ears because the person I was assigned to sit next to is a compulsive knuckle-cracker, and popping and cracking knuckles is literally painful to listen to and acts like a sort of “reset” button on my brain.

What I’m saying with all of this (that went way longer than I was expecting) is that you shouldn’t assume that just because a person can do something, or even do something well, that it means that they don’t face barriers to doing such a thing, or that they have no trouble with it or can do it just like you can. This seems assumption seems especially prevalent towards “invisible” disabilities like autism, but also exists towards other disabled people and even non-disabled people. Just because you don’t see the struggle doesn’t mean it doesn’t exist, and disability is not always the same as complete inability.

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