Fill your paper with the breathings of your heart. — William Wordsworth
I am listening to what you’ve just said; I am are paying attention; I am trying to communicate the “right” way.
I am trying so hard; but communication is difficult for me. Let me try to outline some of the difficulties I face…. and as I write these, may it be noted that my experience is simply that: mine. Not all autistics are alike. Also, take note that while I say these things are challenging for me, they are not life-threatening insurmountable issues. I have good relationships with others: friends, colleagues… I can communicate with others and I enjoy chats and connections. I live independently and am not “plagued” by these issues. But they are still present. I still experience difficulties. I am not an invalid; but I so have some difficulty.
Something I struggle with is the management and flow of a balanced conversation. As a child, I had so many issues with conversations, and all my behaviours were extremes; now I *think* I’ve improved dramatically… In conversation, I struggle these main issues:
- Turn-taking: Wiki defines this as “a type of organization in conversation and discourse where participants speak one at a time in alternating turns”. While I (as an adult) understand the concept of turn-taking, and I know that you need to wait until one person has finished their sentence or thought before speaking, and that we need to listen to understand (not just to reply), I still have trouble knowing when I am supposed to reply. If it’s an interview type experience, I realize when the question stops, I’m meant to answer. But in a social conversation, I am told by a couple of my non-autistic friends that I interrupt them, have monologues, and give too much information ALL THE TIME. I don’t think I do that. But I guess I do? My issue is this: 1) How am I supposed to listen to your thoughts, process what you mean, and contribute in a thoughtful manner, while also continuing to listen to your next sentence, and your next sentence, and your next sentence? 2) How am I supposed to remember my comment while you talk? 3) When am I supposed-to or allowed-to ‘jump in’ or take my turn, with my comment? For me, I don’t have definitive answers to any of these 3 questions. If I am trying to do point 1, I either forget my comment, forget the meaning and context of the topic we’re discussing, or I forget what you’ve just said. If I am trying to to do point 2, I cannot hold my comment and understand what you’re saying at the same time. If I am trying to do point 3, I often end up interrupting because I can’t read the flow of the conversation.
That being said, I love conversations that flow.. and I CAN have them. I have amazing, flowing, fun and interesting conversations with my autistic friends. We jump around, come back to the point, jump over there, come back to the point, jump over there, and there, and there, and back… One person talks and talks and I listen and listen. Then I talk and talk and they listen. We build upon our thoughts and ideas, and we develop a bond in conversation. It’s invigorating.
Also, when I have therapeutic conversations with clients, turn-taking is easy for me. It involves allowing silence, holding the balance between the client talking, and me calmly adding a challenge or remark. The focus of therapeutic conversations is client growth; it’s never about me. I find the rules of therapeutic conversations very clear. But, not so with social chats that I have with neurotypicals.
- Banter: I’m not sure where to start with this one! I find banter very difficult to do right. The Oxford Dictionary defines banter as “the playful and friendly exchange of teasing remarks”. In Australia, banter is seen as a common way to make friends. Um… What now? You want me to tease you, in a friendly way? To me, teasing is that horrible nasty unkind and frightful expression of words and actions made to demean and hurt the other party. To me, teasing is not nice. So how am I supposed to tease in a nice way? What is allowed? What is not allowed? How do I know if the other person experiences my teasing as friendly? I have tried banter, and often I am told that I went too far, or said something inappropriate, or was hurtful, unkind, or otherwise WRONG. Another thing I am told I do in banter is that I do not laugh along with everyone when they are picking on me. Well, banter means that people can say unkind things about me, then smile, and then say it meant nothing? In psychotherapy, in a therapeutic conversation, a teasing word carries weight — there is no such thing as ‘playful teasing’; there’s just irritations expressed covertly.
- Sarcasm and Jokes: I love being sarcastic and making situational jokes, witty quips, or drawing amusing comparisons between things…. but if you do it, I’ll probably be lost. If we’ve been friends for over 5 years, I’ll probably be able to read you… but anything less, and you’ll probably mystify me! I have been advised that my autism makes it hard for me to understand the thoughts and feelings of others, and that my autism creates information-processing issues for me, so I cannot identify certain parts of language, and its subtleties (Yep, flirting was always hard for me!). I wish I could know when you are being sarcastic or innuendo-y. Generally, I will not clue into your sarcasm unless you specifically say, “I’m being sarcastic” or “just joking”. Generally, I will not understand your innuendo unless you’re specifically referencing a previous time we used that analogy, or unless you add naughty face emojis, or say something like, “boom-chicka-wow-wow” after. In terms of formal jokes, I suck at these. I often remember the punch line, but not the joke story… or I remember something funny but cannot explain it clearly. Another thing I struggle with is the understanding of YOUR jokes. I often ask for clarification, to figure out the reasons why you may think something is funny…. and even then I still may not understand the joke. Sorry, I know this sucks. I hate it. I wish I could understand your jokes, especially seeing you laugh so hard over things.
I think backwards, or to say that another way: I think from the bottom-up. This is a classic part of autism. The typical (non-autistic) approach is to start with the large categories and expand into the smaller parts. That means you build a big picture first, and then fill in the details, like this:
- “Cutlery” (concept), and from there you can add “knife, fork, spoon”. These are all types of cutlery.
- “Computer” (concept), and from there you can add “Apple, Dell, Asus, PC”. These are all types of computers.
- “Doing good for humanity” (concept), and from there you can add “sustainability, be kind to each other, make peace, recycle, donate to charity”. These are all ways you could do good for humanity.
But I don’t see the world in that kind of order. Instead, I start with the details, and then move out. I view the world similar to an AI trying to identify objects.
I start with the details, and then move out.
A demonstrative example is this: When I see something walking towards me and you say, “that it is a cat”, I see something with stripes, short hair, has a certain gait, and is small. Now I think of a cat as a thing which has stripes, short hair, has a certain gait, and is small. But, tomorrow if I see another thing which is black, long haired, and is small, I won’t immediately assume it’s a cat unless you tell me it is. If you tell me this black thing is also a cat, I now can create a category, but still it’s not a complete category with immediately applicable objects and rules for categorization. If I see another fuzzy creature of similar constructs, I may not be able to correctly identify it as a cat. To you in all of this, the catness of a cat is obvious. To me, it is not. Now, while this is a basic example and one that pertains more to the experience of being an autistic child, the overall gist is that I see details first. Over time, using more examples, more experience, more clarifications, I can create the concept of “cat”… but I do not immediately see “cat”.
A more “adult” example is understanding how mechanisms work. Just because I can untie a shoelace, unclasp a sleeping bag, and undo a bike helmet, and untether a rope, does not mean I can identify or understand how to operate other clasps. Yeh, I’m intelligent, but my brain doesn’t immediately process things in categories and similar concepts in this way. My brain doesn’t order things like yours does, so I get lost. It will take me many, many, many, many, many times to develop a category, and even then, when the category is broad (like mechanisms) I may still need help learning how to identify and work with this item.
Neither of us is “right” or “wrong”; we just think differently.
This issue of backwards/ bottom-up approach also relates to how I acquire skills. Maybe you have shown me how to use the DVR player, but that skill does not immediately and automatically transfer into my understanding of how to use an XBOX, or to the notion of selecting items on a screen, or to using remotes in general, or how to remember menu titles and categories. For you, this will be automatic learning crossing multiple platforms. For me, it’s a long process… and a slow one at that. I will look at each new item and each new activity with complete wonder, trying to figure it out.
Again, let it be noted, I am not stupid. I just don’t think like you do. I think bottom-up. You think top-down. Neither of us is “right” or “wrong”; we just think differently.
Another thing I find really challenging is processing information. While it is definitive that autism causes an information processing disorder in the affected individual, I also have dyslexia issues. I reckon you non-autistics and those without learning difficulties probably don’t really understand what this actually looks like/ manifests as… So, here are a few things I experience that are related to my processing issues; things I find deeply challenging:
- Sensory difficulties: Part of processing information for me includes the processing of sensory data. Sensory processing involves taking in information from the surrounding environment through touch, smell, sound, vision, taste, movement, and gravity. I struggle with the processing and interpretation of these sensations in my environment. There’s no wrong with my ears, eyes, skin, or thyroid; my experience is just… I dunno “autistic”? I was born this way.
Essentially for me, everything sits in quite intense extremes, with only a few things in pleasant spectrums. I love colour and see all the gradients of green in a tree; I love texture and see all the groves in a surface; I enjoy touching hedges to feel the textures against my fingertips, or touching blankets and materials to explore softness and pressure…. But conversely, I find the sun BLINDING — like vampire-level blinding. Even when the sun is obscured my clouds, I find it overwhelmingly bright. Hot showers almost always feel FREEZING cold and I get goosebumps, as if my body has no idea what temperature it is. I find a passing truck extremely loud, like it hurts my ears. Or a ticking clock somewhere at night, ticks like a huge drum echoing in my head. Or even hand-dryers in bathrooms — those are LOUD!! I find perfume on ladies or someone’s bad breath TOXIC to my nose, so strong and pungent that I can’t breathe. These are only a few things, but you get the idea. The sensory information coming into my brain is like a spinal-tap 11. It’s a full intense experience set to 100%. Now, I understand in typical non-autistic brains, “filters” exist which stop the extremities of a sensory experience. But I don’t have filters, because I have autism. What I do have is coping mechanisms and outright lying. I cope by wearing sunglasses, blocking my ears, or leaving the location of the smells. I lie by saying I’m not bothered by touch, or I lie by acting like the sun is not blinding me on a cloudy day, or I lie by pretending I feel no pain from loud noises or from intense sensations. And the reason I lie is to appear normal to all of you. It’s not easy.
- I walk into things: Part of my sensory experience and my processing difficulties manifest as clumsiness. As a kid, it was sort of manageable, because people forgive you… but now being an adult, it is embarrassing to walk into objects, trip over the (flat) floor, to misjudge the hole of a doorway (and whack my shoulder into it), or to move my hand innocently and knock a cup or -whatever- off the table. When I stand up, I feel unbalanced most of time, as if my feet are not large enough to support my giant body, and it often hurts to stand upright. I see objects fine; I have beyond perfect vision. The problem lies in how my brain perceives my body in space. It’s weird. And I live in anxiety that others will also knock things off the table when they’re talking, with hands waving about. For example, I have to constantly remind myself that my partner isn’t autistic, so they won’t knock things over… but I’m always on guard to catch falling items!!
- Slow thinking time: I take much longer to “get” something, and much longer to process what is being said to me. I find it easier to learn by demonstration where I can actively participate in the “doing” of the activity, along with visual cues. Recently a loved one showed me how to use a staple gun. At first the stapler scared and confused me, but my loved one demonstrated the use of the item and let me try it out under their supervision. This activity helped solidify my understanding of how to use the staple gun and reduced my fear and confusion around its use. I also find written materials can assist me and help me understand what is truly being said, but I thrive on the doing of the activity. While this may sound completely learning-styles related, my point is that my information processing time is still slower than yours.
Some things (like visual learning) help, but on average, it takes me ages to learn something because I need to understand every facet of it to learn it. I tend to ask questions to learn; every question possible. See, my brain processes things slowly and methodically, creating full intricate structures of hierarchy determining the place of an object or concept. There are times when I may look at you with a blank stare when you share something with me, or when you give me instructions, but that’s not me being stupid or not listening/ hearing you. What’s happening to me is a processing of the information. I am trying to link together the ideas from what you’re saying to what I know, and make sense of these concepts in the current context. Other times, I may immediately say, “I’m confused” or “It doesn’t work” or “I don’t know”. This usually will irritate you non-autistics. All you see is the outcome, not my intensive desire to process and understand the information, nor the suffering I experience in the slowness of my processing speed. To you, learning and generalizing tends to happen quickly and (most probably) unconsciously/ automatically. To me, it is a slow process.
One good thing though — it may take me longer to learn and to understand, but once I have learned something, it enters my deep long-term memory, and then I will never forget it.
- Losing my words: Sometimes when I talk, and sometimes when I write, I lose words. *SOMETIMES* This happens two-fold. 1) I can sporadically completely forget the meaning of words, as if that word was something I have never known. This can manifest as asking you to tell me what ‘table’ means, or with me trying to explain something, giving you only its parts (i.e. “it has four legs, is made of wood usually, flat surface, you eat dinners on it?”); 2) I can say something when talking aloud and unknowingly omit words from my spoken sentence. So, I think I’m saying, ‘Let’s go out tonight for dinner. Maybe to the city?’ and I actually say: “Out tonight to the city?”. It’s not until I get feedback and considerable discussion from the person I am speaking to until I start to understand that what I thought I said and what I said wasn’t the same thing. Losing words is part of my autism. I think it’s called auditory processing disorder. Essentially it’s a brain-related difficulty in processing sound. There’s nothing wrong with my ears! I just sometimes lose words because brain is struggling to gather and classify all the information that I hear.
- I see in pictures. I’m pretty sure this is a dyslexia thing, but I have read that some autistics also experience this too. I see my world in pictures, and I want to communicate in pictures. I know, you may look around you and think you see in pictures too, but what I mean is: I find words and numbers just weird squiggles without any real inherent meaning. A picture of a tree means more to me than the word, “tree”. I have learned to use words, but because my primary comfort is pictures, I sometimes lose the words or cannot find a word because I can only access a picture in my mind. I also find I can struggle with meaning of things you say to me, because I’m trying to find associated pictures. I do this especially when the stuff you’re telling me is new or if you’re giving me instructions.
If you want to help me understand something, use visual cues. Like, draw a picture of it, or show extreme emotions in your face, or EXXX-AAA–GGGERR-RATE your words. If you mumble your response or just say something over and over the same way, I’m not going to suddenly understand. Paint a picture for me– literally! 🙂
- No idea what you mean: My catch phrase should be, “What?!” or “Huh”, because I say it a lot when in conversations. It’s not that my ears don’t work, or that I am not listening, or that I am ignoring you. What’s happening is that the information is not coming through in my brain in a correct fashion. It’s not you; and it’s not really me… it’s my brain. I can’t change this. It’s my brain! So, not always, but sometimes, you can be talking to me, and the way my brain processes that information appears to me as if you’re either speaking gibberish, or that you are saying something which you are not. I can hear a sentence you’ve said with key words missing (you say, “Don’t put the spoon in the sink” —and I hear ‘Put the spoon in the sink’), or I can hear it as if you are saying a jumbled sentence (Spoon in the put don’t sink). If the sentence does not make sense, I will question you about it. While that sounds easy to deal with, sometimes it can cause big problems. Like, there’s a huge difference between DON’T do something, and DO it. If a word is missing and the sentence still sounds normal (like “Put the spoon in the sink”), I’ll just do that (i.e. put it in the sink). But when I act on what sequence of words my brain translates your words into, then what usually ensues is the other person saying that I am not listening or that I’m acting out. I’m not a bad person, or a distracted person, or even a selfish person. I am simply acting based on what my brain is letting me hear. I cannot control what my brain lets me hear. It’s frustrating, but its my brain! I also know that I cannot live my whole life questioning every single thing said to me, so I must believe that I am hearing some things correctly… or you’ll go nuts, and so will I!
As before, if you want to help me with this: to hear things correctly, then paint a picture for me. Show me. Illustrate what you mean is something other than words.
- Following instructions: Similar to losing words, or not knowing what you mean, I struggle with following VERBAL instructions. There’s something about hearing instructions that confuses me. Even simple basic spoken instructions can confuse me. My autistic brain does not let me hold in mind multiple steps of a greater task. If I have it written down, then no problem; I can read the steps and perform them as instructed. But if you say it to me, then I can’t do it. It sucks, but my brain won’t let me retain that information. For example, if you wanted me to wash the clothes and you said, “pick up all the clothes on the floor, take the basket to the laundry, detergent is in the cupboard on the left, you know the one next to the towels, then wash everything but the socks” then I may get to the laundry and totally forget the rest of the instructions. I’ll come back to you and say, “I can’t remember what I was meant to do” or “I’m confused”, and that probably will irritate you. It’s not that I can’t follow instructions, or that I’m not listening/ hearing, or that I’m trying to inconvenience you. It’s simply that my autistic brain isn’t allowing me to process this information in this way. Similarly, had you said a shorter instruction, “wash the clothes, detergent is in the cupboard on the left”, I may still get confused. I can’t help this. My brain makes it really difficult to process instructions, especially when verbal/ spoken-word. My coping mechanism is to write down steps, make lists, stick lists on the wall, or to repeat the steps you just gave me back to you. I know this probably annoys you. But I am trying.
- Reading — OMG, reading: You may have noticed by now that I’m pretty good at writing. I am also reasonable at reading. I write ‘OMG, reading’, because reading for me is not exactly a fun activity. I know most of you, even some autistics, love to read. But for me, reading is hard. It has always been extremely hard. As such, I rarely read “for fun”. Reading words for me, is like seeing a page of scribbles and having to consciously remind myself that I can actually understand these symbols; that these symbols have inherent meanings. Yet, I am reasonably good at reading and writing because if I misunderstand or misread something, I can re-read it. Or re-write it! In fact, I re-read my work over and over and over again. This is why I am great at editing. I also spent considerable time in my youth developing my observation and detail-focus skills to hone my writing skills. I realized I needed a way to communicate effectively, and I figured out that I could make writing my forte! So, because I am used to misunderstanding and misreading things, I am alerted by incorrect shapes to words, bad spelling, poor grammar, missing words or letters, and where meaning is lost. I also read out loud. When I read out loud, I hear the words in my head and I hear what is wrong, while seeing (reading) what is wrong. With conversations in person, I cannot see the words, or re-read the words, or reflect on meaning… because the spoken word is said and then it just disappears. So, reading is hard for me, but I much prefer it to hearing speech as I find it easier to convey meaning and thought when I have a chance to confirm the particulars.
- Obviousness: This is something I want to include in this section because I often hear from angry non-autistics claiming that my lack of knowledge or understanding on a topic seems strange because the thing they have described to me is “so obvious” or “so logical” or “so clear”. Um, well, I think nothing should ever be considered “obvious”. For something to be inherently obvious would mean that every single person in the world would understand it, and I reckon if “obviousness” was true in our world that we probably would never have disagreements or wars. I get it — you’re frustrated that I’m not doing what you said, or that I am not understanding what you said… And I know in many situations, you will think something is inherently obvious, and that perhaps most of the population will also think it is obvious, logical and clear… but it is not “obvious” to me. I’m pretty sure my difficulties around understanding your “obvious” statement or instruction is linked to my information-processing disorder, coz I’ve tried to understand. I want to understand you, I desire to do so. I’ve focused on you, I’ve listened to you, and I may have even taken notes… I am intelligent, I am learn’ed, and I can do and achieve so much, so if I can’t understand you when it’s “obvious”, there must be something else at play!
Something else I find a challenge is expression. I know this is a big part of communication. I have quite a bit of difficulty reading others in a non-therapeutic setting. In therapy, I shelf all my own experiences and feelings, so my focus is on the client. I see the client, I listen to the client, I connect with the client. The client takes all of my attention. This way, there is significantly minimized chance of misinterpretation, mishearing, or an incorrect ‘reading’ of the client’s emotional state. Because I am hyper-focused on the client, I am in their world with them, working with them… I can see group dynamics and individual emotional states in the therapy room. But when I am in a social setting, expressing my feelings and thoughts in a balanced equal manner, where the focus is between the people in the social setting/ not directed solely on one person (i.e. the client in therapy), then I struggle with expression.
- The “right” emotional face: I was never taught how to show emotions, or what they look like. So, while I totally “get” some emotions, like smiling or laughing when happy, others are vague to me. I also have a response of crying when arguably crying is not the best course of action to suit the occasion. Maybe I’m over-analyzing this, but I’ve been told I cry too much, too often, and not for the right reasons. Crying is my natural first response to fear, shame, sadness, frustration, shock, happiness and wonder. I can differentiate which state I’m in at that time, but to everyone else, all they see and hear is my crying. Another thing is my face expressions. I feel my face doing all kinds of things, pulling in different ways, but I have no idea what’s going on there. People will often ask me if I’m okay, or what’s wrong, or what I’m feeling, and then look bewildered at my response. I’m not angry or sad — I’m just being me, with my face!
- Vocal difference: I think I’m quite expressive in my voice, as I did drama at school and have taken lots of drama courses since. I also sing and have worked to improve my range of vocal expressions. However, I am so often told to lower my volume; the volume at which I speak is apparently often too loud. I talk loudly because I need to hear myself in order to make sure I am hearing it correctly. I guess I could have benefited from some kind of speech therapy as a child, but I never got that.
- Look into my eyes: I read recently that you’re supposed to maintain eye-contact when speaking to someone because “we speak with our eyes”. Well, I’m gonna sound super autistic here, but NO, we actually speak with our mouths.
When I make eye-contact with you, this is a learned behaviour. It does not help me hear you or understand you. In fact, during speech and conversations, if I look in your eyes, I actually struggle even more with processing the information given to me.
I’ve also read that people who do not maintain eye-contact during speech have “something to hide” or are lying. Um… That’s not true for me. I just look into your eyes when speaking to you because I have been trained to do so. Yes, like a trained monkey, I perform the behavioural action, but this is not natural for me! When I look at you in your eyes when I talk to you, or you talk to me, I actually struggle even more with processing the information given to me. When I glance away, close my eyes, or turn my ears towards your voice, it’s not me being rude; I’m actually trying to give myself the best chance possible to connect to your words, to hear you without missing anything, and to understand the meaning and context of your speech. I am not the only autistic person who finds this “rule” of having to maintain eye-contact while talking to someone irritating. Many autistics suffer being forced to look at people. Growing up I heard, “Look at me when I’m talking to you!” and “Don’t you dare look away!” Sorry I’m not looking in your eyes right now. I’m actually trying to be respectful by making a concerted effort to truly HEAR you.