Oh, hey, yikes. Coming back up here from the bottom to say that it’s 1 AM and the bedtime routine takes two hours and THIS WAS NOT MY PLAN tonight–this was the opposite of my plan–and that means the post isn’t edited yet, as in, stream of consciousness, hasn’t even had a read through. I’ll come back to it tomorrow. Maybe. Maybe I’ll break all my own rules about unwavering dedication to grammatical perfection and won’t ever come back or even read it over a second time. Ever.
“You’re so verbal!” Yes. And no. But mostly yes, though not entirely. …What?
There’s some statistic about how a huge percentage of the words we speak/write are comprised of a surprisingly small cohort of individual words. I’m not looking it up, and so this isn’t at all the right numbers, but say 80% of the words you vocalize are the same 400 words. It’s a lot of the same things, cut and paste, spit them back out to fit the situation at hand.
Topics of conversation aren’t all that much different, especially since I go very few places and see very few people. So, say, 90% of my time way from home is spent in the same three places, and say that 95% of my time with other humans is with the same ten people. That doesn’t leave a huge number of possible combinations, and the thing that follows is that conversation topics aren’t all that novel. Part of that is totally on purpose. My mom and I have our cat chat daily with my favorite string of questions because That is What We Do, and for an autistic person, that’s the ultimate reason to do a thing. Cats, autism, faith, new revelations and problem solving about my health… that’s pretty much it.
What it comes down to is that I’ve got a ton of scripts packed away in this brain. I’m the girl who can tell the day, date, and time I got my insulin pump (November 28, 2000, at 9:30 AM on a Tuesday). I was 12, by the way. I can recall strings of numbers I haven’t seen in months after dialing them once or twice. And my real talent is “the last time I…” which amounts to being able to tell you the last time I said, did, wore, or went anything or anyplace. I usually figure it out as I say the words “the last time I” and have it by that point. Go ahead. Try me. I had my pneumonia shot in Feb of 2012. I saw two GI doctors in one day after waiting many months on September 3rd of 2013. I met my friends D and H on February 8, 2014. I last wore my cat sweater on December 6th (my cat hat and cat hoodie both today, but not at the same time, or, well, at least not visibly).
All this amounts to the fact that my brain is STUFFED with scripts. Some things, like facts (which can be pretty lengthy), lists, and memories of what other people said stick in my brain and always have. So, I can list the system for categorizing rocks by size from eighth grade science class. And for a long time, that’s how I got by in life. But I started to experience some pretty intense depression that year, too, and I think my anxiety was already fairly established. I didn’t tell anyone because I was nowhere near having the words. I don’t think I ever uttered “I’m scared” or “that’s too loud!” Instead, I slept with the lights on or on the couch (never in my room in the dark) every night for years and years, into high school, because I’d seen a movie that spooked me when I was 11. And when things were loud, I panicked. I was overstimulated all through school to the point that I missed quite a lot of days. I didn’t feel good, I’d say. What doesn’t feel good? I don’t. I didn’t share more because I didn’t know more. I knew I couldn’t go into the school, and I typically missed the upper limit of allowed days, often one every few weeks or so. Language not only describes what we know, it also shapes our understanding… and so, without words to put to any of what I felt, I also didn’t develop an ability to know what I was feeling at all. We teach kids, “This is cold! Snow is so cold, do you feel that?” I was never taught, “This is sensory overload. Do you feel that? How do your ears feel, how does your stomach feel? What other situations make you feel like this?” No understanding meant I had no words, and no words meant I didn’t understand.
I knew very early that words I could see were not the same as the ones I spoke. I actually wrote a poem from the point of view of a character drawn in a book with adequate, though imperfect, rhythm and rhyme scheme when I was 6. By fourth grade, I was on AIM (AOL Instant Messenger) and very soon afterward begging my mom to get a screen name. “Why would I do that when I can talk to you?” My mom did note very early on that I was great with information but not at all with social back and forth… I never asked how are you, and my parents will tell you may stories of Lydia Land, which referred to times when I was not responding to people or the environment around me. Still, I don’t think she made the connection that I meant that typing gave me much more freedom, more breadth, more depth. I’m not the only human alive for whom words and experiences reciprocate understanding; it’s true for everyone, and my mom had not been taught how to identify when her child was not able to communicate fully and assured that there was usually more going on that I could say. It was an impasse, one that broke my heart because, by college, there was a lifetime of things I had felt and desired and been frustrated by and laughed about that I really didn’t think she knew.
Leigh is… I don’t know how to finish the sentence. Leigh was the 21-year-old undergrad who had written a paper on autism the year before she met me. She was the college junior who noticed that I was… different… and that I didn’t fit in socially with the other girls in our color guard group. She was possibly the one person who had ever befriended me in part because she could tell I was different. No pity, she says, she just saw someone who could use a friend. A few weeks later, she was the first person to suggest that she thought I might be on the spectrum. Blah, blah, diagnosis soon followed, and then the immediate acquisition of All Cats have Asperger Syndrome… but even if none of that had happened, the one most crucial thing may have been that she really encouraged me to communicate by typing, and not just when it was expected but any time it gave me more ability to communicate.
She also gave me the reason to figure out that texting thing. It was 2008, and I guess I’d been holding out. I also didn’t really have friends to text. Texting really saved the day, and it also gave me that first natural print avenue to talk to my mom. Things are good. Really good. In fact, being able to communication in print and having that be so “normal” has also helped many of my other relationships.
Most people, when they hear me communicate verbally, don’t see an issue. I’m a little rapid-fire, a little Sheldon-y, my intonation can be a little off and my “eye contact is diminished,” as a recent doctor’s report said… but “communication disability” would not be in the forefront of anyone’s mind. That’s because, say, 90% of the things I say are on topics from which I can just pull out scripts. At the autism center, which is my work and main (only) social outlet, I spend a lot of my time reiterating the same explanations, illuminations, and stories to parents. The one about feeding issues, the one about noise, the one about why we stim. I usually have a selection of favorite cat anecdotes for a week or so, like the way Tia was scratching her ear and her tongue licked the air at the same time, the way Goose’s nose whistled when she slept, and how Lucy lost her laser light but got it back. And my health stuff…I’m going to the doctor tomorrow and will have a list with notes, but I should be in good shape to tell her the few relevant issues.
The key is that all of those things have been typed first, usually more than once and some many times. Then, I’ve been through them orally, rehearsed them with friends or family. They’re scripts. Some, I pull out in full. Others, I slice and dice and can lengthen or shorten or create a connection to something else. When I pull from scripts, the intonation and timing is the same. I adore telling stories, but I do tend to share the same ones with friends or family who call or I talk to in a certain period of time… and unfortunately, sometimes I forget who I’ve told!
To say that I don’t have communication challenges after hearing a series of my scripts is absolutely no different than saying I don’t because I can read aloud. It feels the same to me. Let’s go to the grocery store. Try to talk to me then about, oh, I don’t know, anything but cats, autism, or how that issue with the insurance and my med got worked out. Or hang around when I call my mom to say that I can’t tell if my back hurts or if my stomach is upset. Or when I make a phone call to ask the pharmacist a question and it goes: “Hi, I’m Lydia. I… Do… … –. Uh, wait. It… no. Hold on. I’m so sorry!” I know exactly what I need to know, but this brain doesn’t think in language, so even if I’ve got a hold of the big nouns (medicine, prescription, day, run out) finding the right “little” words to connect those ideas together is both crucial and really stinkin’ hard.
In the end, my ability to get the idea out of my mouth varies a lot, especially depending on the sensory environment. I was with my mom in Target and had a question as we walked. Target. Walking. Shoes in view (now, come on, shoes!!). I was looking the other way, had one hand sort of stimming to help my brain along, as I said something close to, “Do they would have to come for going to there, at the party? Saturday?” A lot of what I say extemporaneously, as in, no prep for script formation under my belt, has the big words there, and my mom is darn good at knowing what I mean.
I get all sorts of annoyed and antsy when published articles in newspapers and reasonable-caliber publications have glaring errors. I read an article that said “literally” and “awesome” twice in two sentences. I read one in a city paper that had almost a dozen errors, many of which were either grammar-based or involved redundancy, i.e., “Also, the family went to the beach, too.” I listened to professionally-recorded, nationally-known podcast in which the host mispronounced somatoform (so-muh-TOE-form, when the preferred combination of accurate and natural would be either so-MAA-doh-form or so-MAH-toh-form).
I think the best explanation is that, for me, speaking is like writing is for someone who struggles with it a bit. My first draft of my Master’s thesis, 112 pages, was technically flawless–it comes out that way when I write. Many people can get a point across, but the nitty gritty of the grammar or spelling falters. The process is slow. The writer gets increasingly frustrated as it takes so much work to get the idea across that he already grasps darn well in his mind. He might give up before finishing. It just takes too much work.
And I do that, too. Sometimes, at work, I’ll start and then say, forget it, it takes five times longer for me to explain it than if I just go do it and bring it to you to see if it’s okay. Or as I look at someone else’s sentence or image on the computer screen, I’ll take the mouse and shift things and say, “Is that okay?” because the time to ask the questions would have us all there much longer and have me quite frustrated.
I don’t like it when people try to “help” by filling in my pauses. Um, sorry, but other people are just about NEVER right, especially when I’ve only said two words and you don’t even have a clue where I’m going. My doctor has a scary good track record, though, and if I could, I’d keep her in my pocket. And if I say hold on, that I need to think to get a word I need without which we can’t go forward… and if it’s something the person asked me or if it’s important, continuing to talk to me when I’m holding my ears and have my eyes closed to BLOCK YOU OUT is really not very helpful. Please, please be patient. Just. wait. I know, it’s torture, and silence is awkward, but it will be more awkward when… well, no it won’t, but I wished it would be cause that would stand to make a great point. The third least helpful thing is probably when people make a big deal out of it if I would rather type it. I have a bit of a complex about that after having some people make it out to be an attention thing or a way to give in to anxiety, that “she’d talk if she weren’t so worried about it!”
Some things are more worries than things that happen. I worry that someone will suggest that I was faking when I previously typed more than I do now. After a horrific semester and a lifetime of forcing myself into situations that were way too overstimulating, I reached a point of no more and had a really, really lengthy period of true shut down–about two years. You can go back through my blog and stuff and see from my writing how much more assistance I needed and how much more I typed as compared to speaking. I say a whole lot more now, and part of that was getting of meds that were not helping, but I do occasionally reach a point where I’m done and the words are done. I also worry a lot when people say that they really can’t tell I am on the spectrum or that I seem so typical/high-functioning (I don’t hear that as much as I did some years ago, and I think and hope it’s because the message is slowly permeating that it’s not a very helpful thing to say). If someone thinks I’m not legitimately autistic (and, mind you, they generally say they can’t SEE it, not that they don’t BELIEVE it, so that is my own interpretation issue), then I immediately think that they think my more overt struggles are willful, fake, attention-seeking, etc. Please tell me the last time you met a 27-year-old who needs help to go into a store (one of the things I just still am not able to manage, I get way overloaded), who screams when things get to loud, or who hits, pounds, punches when things hurt (like migraines or nerve pain in my legs) or don’t work (because things are stupid). Frustration has always been my Achilles heal. I don’t handle it well… because I can’t communicate it.
My sister always says that I say a lot of what not to do and not enough of how to help. So, here you go. Chill. Just chill. Chill when I take a few tries to start my sentence the right way. Chill when we have to go back and forth a bit for you to figure out what I meant. Chill when I panic about taking up your time. Chill when I need to show or do and not waste time finding words. Chill when I text you from the next room or email instead of call.
Here’s where it gets hard: Chill when your kiddo’s speech isn’t in the whatever percentile. Chill when he’s seven and only has forty two words but you haven’t begun to open up his world through typing yet. Chill when he can type the answer but not say it, because HE CAN TYPE IT, which means that HE IS SAYING IT. Chill when he’s different from other people; normal people are obsessed about the weather and Susie’s mom’s donkey’s pituitary tumor and Kardashian’s, too. Chill when your kid wants to talk about Pokemon. Chill when he gets upset because you aren’t pulling your weight in the script, because that’s on you, not him. Chill when he isn’t “reciprocating” with his words and really stop to look for the many other ways he is reaching out and you may not be reciprocating his overtures.
I don’t mean “chill” as in make like Olaf in a pool with Elsa’s magic snow cloud keeping him safe and sound… but I do mean to keep perspective and realize that there is so much more to life than fitting ourselves or our kids into pre-made boxes. Every human alive would be happier if they had the guts to say screw the boxes. Your kid has the guts and he’s going to live outside boxes in some ways no matter what you do, oftentimes a whole lot better for it–do you have the guts to join him and live a life true to yourself, experiencing things with the most breadth and depth life allows? Maybe you don’t, but please don’t deny your amazing kid the chance… and I hope no one wastes their time trying to take that freedom from me. It’s the freedom of talking and typing, sometimes both, and sometimes neither if music or art is even better in that moment.
There are a lot of things that are a huge honkin’ deal in this life and a lot that are not. What other people think about my communication method doesn’t matter, but my ability to get my point across does. And I can, with the right accommodations, which, thank God, I now carry everywhere I go just like most other young adults… and the gumption to shrug and walk away if anyone takes issue with it. As I say about so many other things… I’ll be the one writing stories and articles and poems, the things I love most (except for kitties and Jesus, and I’m sorry, Jesus, that I always remember kitties first), and cranky pants will be the one feeling all the yuck things. I think poor cranky pants is only cranky because he doesn’t have the guts to break free, too.