Many people, both professional and lay alike, are sometimes initially reluctant to believe that I really do have autism, and I think the biggest reason for this is my verbal ability. Even professionals are taught that autism = speech and language impaired. That’s not untrue–at all–but it’s also so much more complicated than it might seem.
For me, language is one of the most complicated matters to explain with words. Funny, right? No, more like frustrating. Speech is the first and most obvious matter at hand in this arena: Can I get the words out of my mouth? For roughly two years, 2009-2011, I struggled greatly just to get the dang words from my head to my mouth. For 21 years (prior to 2009), I didn’t know that I had autism… but I did, on some level, know that it wasn’t okay for me to simply do things the way that came naturally to me. I had no idea that I had a different neurology. I blamed myself for being unable to fit in like I thought I should. I was diagnosed in January of 2009, and I graduated from college that May. Imagine acting in a play 24/7/365. You play your part so well, you don’t even know who the “real you” is underneath. That’s how I lived my life, and it was utterly exhausted. Following my diagnosis, my ability to “fake it” (knowing as “passing” in disability circles) started to unravel. That semester was my student teaching semester, and just two weeks in, I was totally shutting down from the stress. I wasn’t allowed to tell anyone either at my college or at the school where I was teaching about my diagnosis; that was “personal stuff” that “shouldn’t matter” in the classroom. Except, it did. By forcing myself to be everything that didn’t come naturally to me, I developed horrible migraines. I was physically sick from the stress of it all. I quit student teaching after 2.5 weeks. I did graduate, and for the next two years while I lived at home, I was often unable to speak at all. I seriously regressed in many areas. I didn’t know then that losing speech isn’t uncommon for autistic people. For me, it was sensory overload meeting with feeling pressured to return to that state of faking it–that’s what would cause me to lose my words, and it happened often.
These days, it almost never happens, and that’s because I’ve taken the pressure off myself to fake much of anything at all. I’m not like most people… and, instead of pressuring myself to pretend that I am, instead, I choose to educate others about differences and why they’re a wonderful thing.
My speech, these days, sounds almost typical. Sometimes my cadence is off. Sometimes I get script-y, especially in the car with my mom. But, more or less, I sound fairly typical.
But that’s where it starts to get complicated…
It sounds like I have a ton of vocabulary at my disposal, but, I have a hard time with word retrieval and even concept retrieval. I lost my train of thought more than most folks. A lot more. I also have a hard time getting the word I want… “it starts with an p and it’s when you do something in opposition to something else?” The word was protest, that time. I do this multiple times per day, though. I have a hard time calling up the words I need, when I need them. I can often see the painting, in my mind… I can see the finish product of what I want to communicate… but I can’t figure out what brush strokes I need to use to make the painting. This greatly reduces my actual ability to communicate things in real-time, in real life. Sometimes, this results in instances like this: We were at the grocery store following a doctor appointment in which I found out I would have surgery to remove my colon. My mom hung up the phone after talking with my sister, and I asked, “Did you say to her that they would take off my butt?”
I also sort of get stuck, is the best way I know to describe it. My mom was standing on the other side of my bed from me, and I asked her to pull the curtain. She pulled it. “No, the curtain.” She said, “I’m pulling it.” “NO, the CURTAIN.” And so we went, round and round… and round… what I couldn’t get out of my mouth was that I wanted her to pull not the window curtain but the privacy curtain–two different curtains. My brain couldn’t switch gears to get the necessary words out of my mouth.
(Speaking of losing my train of thought, this is the second time since I started this post that I’ve done that, now…)
Often, when I write, I have a hard time making sense of my own words when I read them back. I read others’ words, and I don’t understand nearly as much as I appear to get… I pick out a word or phrase or idea that I DO get and respond in detail to that… but the whole idea of their words is totally lost on me.
Oh! I got my train of thought back! It was this: I have a processing delay, such that, when someone asks me a question, I need an extra few seconds to answer them. Some people on the spectrum need much longer. My delay is just long enough that I do okay speaking with one other person but have a very tough time with a group. Anyhow, in an attempt to “fill the gap” when someone asks me a question, sometimes I accidentally let my mouth answer before my brain has any idea what you’ve said. My nurse, one time, asked if I needed her get to me something down the hall. I said yes, even though I meant no. She asked if I needed anything else, and I said no, but meant yes. So, she brought me what I didn’t want and nothing more, and I looked at her like she was nuts… I didn’t know what she’d brought me what I didn’t want and didn’t bring what I did! I don’t generally hear myself answering, either, and it’s so ingrained in me to just answer that I don’t usually think to ask for a moment to think. As far as my nurse, she now said, “Are you answering me automatically?” It’s hard to put the burden of my answer on someone else, but it’s also hard to teach myself to stop and think. Sometimes I answer then say, wait, I’m just answering you without thinking, and then I think and respond. I need a surprising amount of time to process.
Point number whatever we’re on, another struggle with language, is that I often sound very eloquent when the topic is an area of expertise, but when the topic or situation is novel to me, it’s much harder. In her book Reflections of Self, my friend Sondra Williams describes her Gumball Theory, which essentially goes like this: Each attempt at communication requires me to put a quarter, a token of effort, into my gumball machine. My machine has many red gumballs, which are utterances or expressions that aren’t helpful or pertinent or intelligent or otherwise what I want to get out. But, I have a few blue gumballs… and those are the prize. The blue gumballs are communications that are on topic, make sense, and actually convey what I want to say. Often, when I attempt to communicate, I get red gumballs. Sure, sometimes it sounds smart, but it may not be what I actually wanted to say in that moment. Sometimes, for me to convey what I want to convey, I say a lot of things
Where I’m about to go with all of this is where I’m afraid I’ll get burned, and that is exactly my point, oddly enough.
Many people in the disability community are really focused on… words. And I get that. I know how I feel during conversations like this:
Me: ” Blah blah blah… is because I’m autistic.”
Person: “YOU have autism? You must be VERY high-functioning!”
I want to explain to them the errors of that response, but, again, with processing… I can’t respond in real-time to a comment like that as I’d like to be able to do. I know how bad those comments make me feel. My sister often says that I need to look at the intention… they mean well. I get frustrated with that. If 2% of the population is autistic, then, just like it’s considered inconsiderate, rude, even hateful to use racial slurs, I think there is some burden on the public to learn about appropriate language surrounding disabilities.
But… when I’m among groups of advocates who are very focused on language and rhetoric, I become completely overwhelmed. Given my language issues, I simply do not have the ability to work around everything they perceive as a linguistic no-no. I become absolutely terrified to say anything at all, because I know that whatever I say will be met with, “That’s (insert -ism here).” That’s ableist. That’s racist. That’s audist. That’s classist.” I have no idea what intersectionality means and I don’t truly get the ideas about “privilege,” (and, no, this is not an invitation for you to define those words for me right here and now). The language surrounding those ideas is so full of words that have no concrete meaning, words that are simply… words. When I hear this:
“Intersectionality (or Intersectionalism) is the study of intersections between different disenfranchised groups or groups of minorities; specifically, the study of the interactions of multiple systems of oppression or discrimination” (from Wikipedia’s definition of intersectionality)
I might as well be hearing, “Smorphism is the study of the diseavegum between different plovertymump groups or groups of shravocking molyglops…”
You get the idea. They’re words. Words without meaning. While I get, on some surface level, that calling a striking situation “crazy” can be hurtful toward someone who identifies as such, I also get confused very quickly, the further into that we delve. I mean, words change meaning over time. Just because a word, at one time, was used to refer to a group of people, does not mean that what I’m saying has anything whatsoever to do with that group of people. Also, as someone who has had mental health issues, does it make any difference that I might as well be referring to myself? Does my position in this whole thing change the words I can use without being guilty of an -ism? I don’t know, but I daren’t ask the questions, because the conversation so quickly devolves into words words words that have no concrete meaning that I just want to bury my head in the sand.
See, for all I know, phrases like that (bury my head in the sand) have some history in referring to some minority group and therefore could be -ist toward somebody and, well, for Pete’s sake (is that an -ist statement, too?)… I come to fear saying anything.
So I don’t.
So I don’t blog at times, so I don’t write, so I don’t seek opportunities. So I don’t engage, because I might say something wrong.
I can’t say that I know where to draw the line between, “Have you thought about the words you’re using lately?” and “You speak words words words but I have no idea what you’re even saying anymore.”
I do know that I’m going to think and look more closely at what people mean to convey–the heart behind it–than at the words they choose to convey it. I don’t want people to fear saying something wrong in my presence. I don’t want to miss a good heart because of what I perceive as poor choice of words.
I open to comments and talking about this, but I warn you that it’s a subject that, again, devolves into meaningless words pretty quickly for me, so please don’t be offended if I ask for clarification, rewording, or otherwise. I’m trying to engage with what you mean, not just what you say, and that’s hard for me. I’m great at finding a way to respond to some detail of what you say, but it can be difficult for me to grasp the totality of what you mean.
But, we’ve got to start somewhere, so, let’s go. What do you think?