When you see a car outside the window, and you want to tell your friend, who is in the room, what color it is, you open your mouth and say, “Sam, there’s a blue car outside!” When your brain and your mouth are connected in a neurotypical way, this happens without any careful thought, force, or frustration. You think and you speak, almost in the same instant. I’m autistic, but I am (mostly) very verbal, so I do know how that seamless process feels. But… knowing how smoothly it can happen also means that I am very aware of how difficult it is when the process gets a wrench thrown into it.
Sometimes, when I go to communicate something, it gets caught somewhere along the way. Taking the example of the blue car, the first step is visual processing–am I actually able not just to turn my head in the direction but to actually see and recognize that there is a blue car? In an overloaded state, it isn’t likely that I know what I’m seeing at all. The next step is taking that image and turning it into the appropriate words in my mind, so, in this case, I would need “blue” and “car” and “outside” and “window.” Then, I have to speak those words, which may sound simple enough, but it’s not only getting the words out… I have to get them out with a volume, intonation, and with the exact timing so the other person hears me and knows whether I’m communicating something nonchalantly or with great urgency. Often, the hardest part for me is the timing… I get frustrated and say, “But I aimed for the pause!” By this, I mean the pause in a conversation. I have to start speaking with the right tone and volume when there is a pause, and because I have a split-second delay in processing, I often miss it, and then my words are piling over someone else’s words. That is considered rude, and some people have absolutely no understanding of how hard I’ve worked to aim for the pause and then how frustrated and upset I am that you’ve missed it yet again. When they take you to be neurotypical and thus have a brain that works just like theirs, they cannot conceive that you may really struggle to get it all right.
I’m not sure how to explain why I speak so fluently some times and struggle so much other times. I run the gamut from being able to weave words around complex ideas and emotions to crying in the store aisle because I want crackers that I can’t find and also cannot communicate that. I actually lose all ability to speak sometimes… a few years ago, during a period of prolonged, severe stress, shortly after diagnosis, I went nearly two years with a great deal of trouble finding my words. I rarely get to that point now, as I know when I need to stop and rest (and don’t generally feel guilty for saying I need that break). It still happens on rare occasion, but quiet and rest help my body and mind connect to one another again.
It took a long time for my family to understand my struggles with verbal communication. I’m still not sure they truly understand, as their brains don’t work like mine. For that matter, I don’t really understand, either, I just know the pattern and have seen it enough times to mostly know what to expect. I think that’s true for them, too. They don’t so much know how it feels as they aren’t surprised when they see me struggle.
But I’m 27, and there were a whole lot of years before my diagnosis (I was diagnosed six years ago, at 21), before we had any justification for what I’ve always called my words getting constipated. I almost always know exactly what it is I want to say, but I don’t know the English word for it. Even if I do, there is often a problem getting it to come out of my mouth. And then I get frustrated… growling, slamming things down, crying, or totally giving up. It’s just too much work! And before you call me lazy, imagine having this battle countless times a day. Eventually, it’s not worth it.
I started using AOL Instant Messenger (AIM) in fourth grade at age nine. Immediately, I knew something was magical about typing words onto a screen. In middle school, grades 5-7, we had typing classes, and in that first year, I could type 60 words per minute without any mistakes. It wasn’t long at all before I started trying to get my mom to sign on to AIM and chat with me. I wanted to tell her things and talk with her! She never liked it at all and never really took it. My sister, who is six years older, did, and so we chatted regularly when she was away at college. My mom and I were never close… I felt like she didn’t know or understand anything about me. I dealt with depression and an eating disorder in my teens, and I couldn’t tell her. I didn’t even tell her the day I got my period; I just left her a note! It wasn’t because I didn’t want her to know but because I didn’t have those words. By my mid-teens, she was taking me to counselling, and I was mostly silent there, too. I wanted help. I wanted to feel better. I was scared. But even with a verbal IQ measured in the top 0.25 percentile, I may have had the vocabulary, but I did not have the communication ability to share anything about my internal world.
I could go into more detail about that story, and if anyone wants to know more, please say so and I’ll address it in another post. But this post is about how the keyboard changed my world. Texting and emailing have really taken off, and they are absolutely critical for me, and better still because they are so common! Many of my friends are spectrum pals spread across the country and the world. I’ve connected with friends because they also love cats, who do advocacy work in other areas, and who have the same health issues I do. But the most important thing is that I have access to written communication with my family. My mom, who will be 63 this month, texts all the time. I have sent her a note to thank her for helping me get ready for bed (with my medical issues, it’s a real marathon) when I was upstairs and she was downstairs. After a doctor appointment that went awry last year, I got back, calmed down, and emailed her to explain my behavior, and it made a lot of sense when she knew the whole inside of what was happening in my brain. My sister recently dealt with something hard, and while we talked on the phone, I kept trying to get the cat to meow, because she kept meowing like she had laryngitis and it was funny. My sister didn’t want to laugh at the cat right then. We texted afterward, and I was able to explain that as much as I know that the cat doesn’t bring comfort to others, she does to me, and when I’m stuck in a moment of wanting to help and not knowing how, I almost always still resort to kitty stuff. When I ask questions verbally, I sometimes get accused of being unemotional because I ask too many. But when we switched to texting, we had a good conversation, good on both sides.
I also use my iPad mini before I go into a doctor’s appointment. For doctors I know very well and feel very comfortable, or if my mom is with me, I just make a list of what I need to be sure to address. But when it’s a new doctor or one who makes me uneasy, or if I’m alone, I often write a letter out and let them read it.
I’ve learned that it can be extremely hard for NTs to understand how my brain works… how I can have a massive vocabulary but be unable to say what hurts me. Or how I can lecture in great detail on many an obscure subject but walk away when someone asks me how I’m doing. Or how I can recall a string of numbers I’d only written a few times (actually, it was my bank account number) after not seeing it for two full years but end up hitting myself because I can’t pull up the color word for whatever I’m trying to find. NT brains don’t work like that… but, for one thing, I find it mighty curious that so many NTs can’t correctly place an apostrophe for anything. They also have a wretched memory for dates; I can tell you the last time I said, did, wore, went, etc.for anything at almost any time in my life. We both have our strengths and weaknesses!
And when it comes to explaining why my brain works the way it does, well, it just does… just like yours works the way it works. Rather than trying to coerce my square peg brain into a round hole and get information or complex communication from me out of my mouth, why not hop on and send me an email or open a chat window? Don’t get stuck on the things that are hard… celebrate the things I CAN do!
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