The other day when I was in an IEP meeting the assisted communication specialist was describing a new communication book that we would be using for Beans. She described how we would point at the pictures in it to talk to him, and not just use it for him to request from us. In other words, it wouldn't really be PECs, and it wouldn't just be a one way conversation. Most of the people at the table were confused at what this meant, why it was this way, or how to use it. The communication specialist was trying to explain it the best she could in her technical language as it was taught to her. She was over complicating it, and missing the mark. That's when I stepped in.
I explained to them that many people on the autism spectrum never think in words, and don't interpret the world in language. Some of us can learn it, and some of us can't. Sometimes we think in pictures, sensations, or in a way that I can only describe as intuition, because there is no word for that. When we speak to my severely ASD son with words he most likely has to translate this to pictures, or to whatever way his brain interprets things. On a good day, some of the message might make it through, depending on how familiar he is with those words in that order. On a bad day, or day where he might be low on energy none of the message will make it through. It will be a garbled mess. So, when we point at the pictures to speak to him, there is a conversation going on. He is not just using his book to ask for cake, or to go swimming. He is able to 'hear' us. I might tell him that I am wearing green today, and point at the color green. Or maybe, I'd like to tell him that I think it's hot outside. So many choices, but the idea is to build on receptive language in a way that he might grasp it better.
That got me to thinking about the subject of how I interpret the world,
and my own private thoughts. I think about this sort of thing often, because I am a question asker, and this is what I do. I wonder what it's like to be others. To think in words. How does that work? How do I describe how I feel, and think when they are foreign to spoken language?
Well, I'm going to try.
Here are some examples of what I mean:
Sometimes, I will step outside, and I will see the color of the sky. It will almost always remind me of something. I will translate that image of what I am seeing to something in my past. Everything I see is connected with a memory, taste, smell, emotion, and or sensation. This is why I find it imprortant to not set up negative routines, like picking up a meltdown-y child. Now, everytime X happens, the autistic child does X behavior, because it is their routine, and what they connect with that moment, even if it's something unpleasant for them once a connection memory has been made, it's hard to break.
However, that us another topic, that I do plan to address later on another post.
Back to the sky....So say, I look up, and it is cloudy, a dull cloudy, with a heavy humidity in the air. Well, this is how most of my dreams look. I am gonna automatically associate this moment with melancholy, and the feelings of my dream state.
Maybe, the air smells of gasoline, and warm grass. That will change the feeling of when I was a child walking places with my mother. I loved doing that. I associate that also, with yellow parking lots markings, because I used to like to examine those.
If I feel the warm sun, with a slight breeze, I might have the feeling of being 10 years old, and swimming in my pool, and eating popsicles. I will literally feel this whole memory in my body,as well as the emotion that I felt during that time. Like I said before, if it is a bad one, then every time I am reminded of this state of being, which is completely involuntary, I will feel like I did at that moment. It is extremely difficult to undo a physical memory, or connection once one has been made in my mind.
The smell of certain things, or the colors, or the sensation at any given time might connect with another time, and place in my head. My thoughts aren't stored in words. If something bad happens while I am watching a television show, for example, I may feel like I did during that bad time every time I see that show. I might even feel that way every time I am reminded of anything to do with that show. I will then want to avoid that show, even though my emotions has nothing to do with that particular program. This is also how anxiety disorders can get out of control for some of us. The feelings are so strong, and inseparable from our beings that it can feel like the world is attacking us. We feel so much, so quickly that it is involuntary. My world is vivid with all of my own private thoughts about all the colors, people, smells, and tastes in my environment. My brain is interpreting all of these all the time, as fast as an NT's brain does language. My input is fast, but my output is slower.
The output is where I run into issues. I discuss some of those issues in this post about loneliness. I have so much coming in, but sometimes no way to get it back out. There are no words for the intense joy that I feel when I listen to certain songs, or when I cuddle with my husband. I have no way to describe these feelings, because there is not adequate language. There is a wall that I run into when I want to share my experiences, because of the language barrier. Sometimes, I wish that I had a way to plug another person into my thoughts so that I could let them know what I know, because I can't find the words to tell them how I feel, or what I feel is so joyous that I want to share every drop with them. I feel every emotion in a depth that I can't describe with words. When I try to think of what that is like I see different colors inside of my mind deep in hue vibrating. There is not a word in the English language that describes the meaning of that thought, or emotion.
Just like everyone has varying degrees of sad, happy, mad, ect.. So do I, but mine are listed as events. Like, if I am to think of the generic word sad, I taste salt, because I cry when I am sad, and that tastes salty. If I try to think of what that emotion might feel like, I need to think of specific examples. Sad, as in when my brother broke my radio, or when I lost my daughter? What degree of sad matches the situation? Happy, as in how I feel when the sun touches my face, or deep happy joy, like when I got married? These are how I describe emotions. They are a complex index of past experiences, and sensations that is forever making new connections.
I would be interested to know how you (NT, or autistic) process emotions? Please, tell me in the comment section below.
You did an excellent job of using words to describe these feelings. I especially can relate to the way things "smell" most especially the air. The air will smell like spring, or fall, or thanksgiving even if there are no smells of food in the air. It is just the way the air was crisp the first time I noticed it on the particular holiday 35 years ago--and the smell and more importantly the FEELING of the air stuck.
ReplyDeleteThanks for your reply. That's exactly what I mean. That feeling of what most would call nostalgia, but for us it can be so much deeper.
DeleteI have to share this. Again, you've found a way to put into words what it so hard to describe. Smells have always brought about feelings for me too. And yes, they are always the same. Sometimes my own actions bring about memories...if I'm washing the kitchen floor for example I always have the exact same memory. I've called them my "connect the dot mind puzzles" since I was a kid. I would also love a way to "connect" to someone, as in with a USB cable. lol. I just said this recently. It would be so much easier to share what I'm learning if I could plug into the other person and hit download. I'm finding talking about it to be challenging at best. Thanks again for a great post!
ReplyDeleteThanks for reading, and commenting! I feared that no one would know what I was talking about, but thankfully it was an unfounded fear!
DeleteThis is such a powerful and poignant post. I'd like your input to help me better communicate with the adults I work with on the autism spectrum. Since words often get in the way, are there alternatives that will help me better communicate. Perhaps drawing things out, or using pictures and metaphors are most helpful? I look forward to your suggestions as to what might help you if you were a client in a therapist's office?
ReplyDeleteI think that for some people drawing will help, and for someone like my son who is severely autistic pictures might, as well. I am also not a verbal learner. It's the worst way for me to learn. I really like to read, and write, and rarely forget anything that I write down, so that is always a good way to communicate.
DeleteWhen I have been in therapy I liked to have an agenda as to what might be expected of me, so that I can think about it in between sessions. Like, next time we will talk about _________. That way I can feel prepared. I also like to write instead of talk, but I can get really wordy, and kinda off focus when writing, so that doesn't always work for therapy when the therapist needs to really have a dialogue with me. Maybe, even a bullet point list of what topics you'd like to discuss with a client would be helpful.
Thanks for your comment, and let me know if that didn't answer your question, or if you'd like more info!