Misunderstanding Autistics

I can only speak for myself. I want to tell the world what a crock of shit it is the say that all autistics are incapable of feeling or showing empathy. Who the frick said that? Could I please explain how I see things sometimes?

I see someone crying. It isn’t that I don’t care. It’s that I don’t know what to do. I visually go through my index of zillion responses to try to find the most suitable one. This causes great anxiety and often I don’t respond in appropriately. There is no flow. A superficial pat on the back? An overused “Are you okay?” or “Oh, don’t cry. It’s okay.”   No. Just no. I’m tired of people thinking that no/lack of response =no empathy. It often means quite the opposite. Sometimes things are just so excruciatingly intense that I can’t do anything. I’m so sad and understanding of things if I can refer to or relate to something that I know and experienced-then I feel I understand. A lot I don’t understand why things would make you or another person upset but it doesn’t mean I don’t care you are going through that.

Sometimes it’s like watching a foreign movie. I can see the movie. I can hear it. I can see things are happening, and I often follow along visually but the content is missing…kinda like not getting the “whole picture…”

I think if I get organized enough (haha) I want to do a response to all the stereotypes and misinformation out there about people on the spectrum. NTs (neurotypical) people sure can be arrogant and assume people with ASD are “stupid” or “lower” than them…it really angers me.

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I wanted to be.

Reflecting on my life so far there is a lot of “wanted to” (be, take, complete, experience, do….) There is a lot of “didn’t do” and much of it was due to my inability to have a consistent attention span and persistent interest in what it was that I wanted. Normally it becomes boring or I learned as much as I wanted, and then I moved on. Or I experienced troublesome adjustment issues due to change (deaths, job change, conflict with people, moving, relationships) and experienced severe feelings of loss, or anxiety, and depression.

I was thinking today how I cannot.stop.thinking. I can’t let go until every single question I have is answered about something. Until I have this sort of visual in my head of understanding or any concern or question or interest in knowing something is fulfilled. I’m not satisfied easily. I will research everything until I know it well. But, only in things that I find interesting to learn, to prove, to analyze, to compare, to understand. It’s a pro/con in my life that I can’t escape. It provides pleasure (I like doing “it” -learning) but I can’t stop and it can be a detriment to my relationships with my family, so called friends (that I never speak with) and my spouse. I struggle with coming out of it-that feeling where I am so deep somewhere absorbed in this…it’s narrow, it’s a place of all these things that become my “present” and real life sort of becomes quiet and falls to the sides….sometimes if there is a timer set (I frequently use them now) I am alerted and startle out of my state and realize shoot, I forgot to do life…to eat, get ready, to get out of the house. But I don’t really want to do those things anyhow. I want to do “my” things.

There were always signs of “me” that seem so obvious now that I am older and more understanding of autism.

Thinking in Pictures (question for “neurotypical”or autistics)

I read this short interview on Huffington Post today. Temple Grandin was asked a question about thinking in picturesHere is her description when asked about “dessert” and what thinking in pictures is like:

I went to Starbucks yesterday afternoon and I had two chocolate cake pops over at the hotel. Now I’m seeing a delicious, decadent flourless chocolate cake I had another place. Now I’m seeing desserts I had as a child: strawberry shortcake and coffee ice cream. Now I’m up at Ben & Jerry’s getting a scoop of ‘Coffee Buzz Buzz.’  (T. Grandin)

My question is: Doesn’t everyone think like that? 

It’s a serious question for me. Of course this is how we think (or I think). I can’t get an idea in my head of what NOT to think like this would be like. I assume everyone does and perhaps it has to do with memory and recall or ?

My thinking is what Temple Grandin describes as “thinking in pictures” but I think about it often (how I think and how I could describe something to another person) like flashcards or playing cards with pictures on them. These pictures represent a feeling, a memory, a thought or consideration, anything really. It’s how they operate however that makes it difficult to describe.

Pretend you are sitting at a table with another person (me). This other person has a handful of cards in their hand. You ask them a simple question. In super fast superhero mode the other person takes the hand of cards and puts them down on the table with a quick snap (fast). They lay out the series of cards (pictures) in a row in front of them for you to see but they make a new line after about 6 or 8 cards. They continue doing this until you interrupt and say something else or ask a new question or just a little statement like “wow, it’s nice out today….” The person doesn’t stop snapping down the cards in a sort of “memory game” lay out. The pictures just change. The momentum never wanes.

Snap snap snap. Like a card dealer snapping down quickly the picture filled cards in front of you. Each one is visual although one might represent a feeling at that memory or an occurrence, or a memory about your past, or something you forgot about for years, or anything really.

Do you know that word association game? One person says a word and then the next person says another word that first comes to mind from hearing that first word, and then the person beside says another word that comes to mind.  All different words but each one slightly associated to the previous (for the person stating them). It reminds me of how my thinking is. There is no thinking through to the end of an idea, or logical pattern of start to finish and then moving on to something else. Or in words. Do people think in words? I mean I see pictures of words. The letters in black with a white background just like on this computer screen. I’m curious how others think.

Just be different.

What are the messages that you have received throughout your life?

 

A few that reflect my life:

  • Just be different.
  • Just try harder.
  • Just do it .
  • It’s not that hard.
  • It’s not that big of deal.
  • Stop being so loud.
  • Stop scaring me, you are too loud.
  • …….etc etc.

So, I’m going to tell those, and all the people who have minimized my struggles or discounted my feelings (family included) to shove it.

Here are a list of things that I WANT to say but can’t. Or WANT to verbally explain but somehow can’t . They might be easy to write but not to get out in a way that makes sense, and me being in the same space as a person. I can’t do two things at a time (explain, express, and be present with you)

When  you are dealing with someone who might have difficulty with communication whether it be intermittent, or just when there are feelings triggered-keep a few things in mind.

Take sadness, discomfort, extreme happiness, grief, anything really except for “regular” neutral (flat) feelings. Does it appear the person suddenly is not engaging with you? Have they disconnected? I often feel a wash of extreme difficulty and can’t get words to my mouth and out. This doesn’t mean I’m shut off. Things are much more active in my head (a lot of thoughts, connections, patterns, considerations, etc) and just because I’m not engaged doesn’t mean I don’t care. It means the exact opposite often. It means I care terribly, and hurt, or  am upset, or affected, or am experiencing feelings along a more pleasurable level (respect someone, grateful, appreciative, nostalgic, etc).

I feel if people would ask me yes/no/i don’t know questions then there isn’t much “emotion” involved in those answers. I might not be able to manage a “I’m upset right now, and need some processing time, and disconnect from light/noise/people/expectations” but if you ask me if I’m having some feelings, I might be able to say “yes”. I won’t look at you or if you try to get me to stand in front of you while asking me, I won’t answer. I will leave, react angrily, or other and make it so that you stop doing what you are doing to me  . That might mean being in my space, intently looking at me, observing me, gauging what is going on, asking me open ended questions, being reactive/defensive, intruding on my thought process…etc.

Keep a comfortable distance. Ask do you want to be alone? Do you need processing time? I can’t always say yes and no, and sometimes I ignore you and shut it out. But the answers are happening inside my head. It doesn’t go down the right path to my mouth to get “out there.” If you step closer I might turn away more as if to hide. If you step away you might see me calm down a bit. I always feel like it’s like being claustrophobic but of people, of their questions, of their being around me, of noises, of smells, of expectations.

When things affect me I don’t want to gauge how or who I am. I want to process and work through how I know best. It means I want you to drop the expectations of me to be however I am supposed to be (what is the social norm or appropriate) and adapt to me and what I need.  I want space to be myself without feeling bad that I can’t be just like you or others or what is “expected” of me. It causes anxiety. Remove expectations of me to be a certain way or different. As long as you are around me I feel there is an expectation that I have to hold it together, and I will ultimately do things that are displeasing to you. Just let me be.

 

 

 

 

 

 

 

Grammar

It bothers me that I have forgotten proper grammar. I include – and , and more , and run on sentences almost like, this one, but not quite because normally they are much more-longer. Then it drives me sooooo crazy that ugh who is this person who puts ‘ and , – everywhere and doesn’t proof read ever before hitting publish (hmmm same with verbal conversations actually….). So it’s almost comical that it’s driving me up the ocd ish overload with all the crappy grammar in my posts. I guess I can laugh at that.

That place. Embarassed. Sometimes I hate being me.

Again, I traveled down a picturesque road in my head determined to show what I see . I made everyone uncomfortable. I was disrespectful of an opinion, a professional opinion, and was “stuck” in what I was getting at, or hearing, or saying. I could not move from it. I could not really hear all the words you said to help me understand something that was “not” why we were all there. I was rude, apparently…I was angry, and defensive and stubborn and “stuck” again.

I suddenly had this feeling like I had done something wrong, perhaps it was because I myself knew I could not stop, could not think of anything else, was tuned out of outside life then. I always “never say the right thing” and don’t understand what “I should have said.” I just don’t get it…I have this deja vu type feeling-an “inkling” that maybe I went there.

There. Is a place that I frequent (obviously) – determined by the amount of conflict (large and small) that I  run into when interacting with other people and when verbal language is exchanged.  I use any of the words that most relate to something (like a word association) to get some description out of my head. It’s like I use a thousand words going on and on and on trying to get to the centre- the “thing” I’m trying to say and I go in circles around the centre and people get the wrong message. I’m failing, most of the time. There is when I understand that I was either rude, opinionated, arrogant, something or other and I didn’t realize it till after when other things make me understand this. An expression and words from a close person (spouse), a nasty message about how I am, or someone “de-friends” me 😦  I would not know until I felt consequence by some action. Ostracized. Shamed. Shamed for not being how we are “supposed” to be.  It’s like this feeling I possibly did something wrong but can’t “see” me, or “it” ever so I am not quite sure. I wait for the fallout afterwards. I wish it was videotaped so I can learn. I can improve things when I can see how they are supposed to run, operate, go, act…I have to have a visual representation in my head to know where to go.

Again, I am there. I feel embarrassed of how I am or what I am like. Because I would never want to alienate, disrespect, be arrogant. My intentions aren’t to get you mad or frustrated with me but that is often the case. My intentions are because there is something deeper, that is important to me. Why not discuss.I guess it’s because I cannot express myself clearly or think ahead of anything I am about to say. I feel sorry, and shamed. I am there at that place where I am hiding in my room because the looks, comments, experience told to me by a present person helps me understand that whatever I was like, it wasn’t good.Combative, stuck, and as I heard later..”spectrumy” although I’m really unsure of what that means because I can’t see what they saw.

I don’t get it though, I don’t remember it or “get” a lot of it but know that there is that after effect thing of me being me. Sometimes, I just want to be different. To be normal. To not be like this. It’s embarrassing. I feel really bad about myself. I don’t feel sorry because I’m sorry for speaking my thoughts but because I’m sorry because I’m embarrassed if that makes sense…maybe there is something wrong with me. I just don’t want to be like that at all.

I can’t look at the world when I’m embarrassed. Not you, or anyone. Open space, ugh..I feel like the whole world is watching me and I have to hide. So embarrassed to be me. It’s like a mixture of deep sorrow, sadness and embarrassment at same time. Then I’m worn out. I have to retreat into own self and space. Goodbye world, hello mind. Words can’t even make it to my mouth to speak anymore aloud.

 

 

 

Fear of stupid.

Fear of being viewed as stupid.

Acknowledging all these things I can’t do. Well, not consistently. They aren’t “difficult” things. They are more mindless, annoying, and boring things that remind me of cardboard. Flat and uninteresting. Adaptive or independent functioning. Hmmm. I’m not stupid! (I want to yell). I can DO these things just not all together, and not all the time, and not today, and I don’t WANT to do them because they are soooooo boring that I will feel like gauging my eyeballs out if I have to. Well, not that far but you get the idea. And some of it…it’s too hard to keep track of all these little things that I should do. If I have to “think” about it and it not be automatic, then things are hard and difficult.

Routine, established creates music. A flow, a dance in the day. Gently gliding to the next expected thing. But, it is not routine. It is not automatic here. It’s chaos. Internal, and sometimes external. It’s too loud. There is too much movement.

I struggle and say I need help. Not with everything but a “somewhere” to start. I need a bit of a director/leader. Someone to help me start and say hey, let’s map out (brainstorm/mind maps) all the major things going on, or what we have to do and get a good grasp on where we are and what direction to take. I can’t “start” and “organize” enough to get this done from step 1 to step done. I tell my spouse I need this. Not that over there, but this. Please help me. I want to feel I can accomplish something. That I am in control of something. Don’t do all that other stuff, please. Help me feel empowered. But…there is anger and defensiveness. I can’t express what it is that I need, and why and how that is different from just doing things “for” me and giving me “breaks” from our family life, time to myself….

I wish I could print out detailed flash cards of pictures in my mind to show him. That would be so much easier. Flash, flash,flash….then you have enough information to “understand” what I am trying to explain in stupid english words. God, I hated English in school….(yes, English is my first language).

Back to being stupid. It’s my biggest insecurity. I could not express myself, and felt dumb. People thought I was “dumber” (haha) or just shy, or not that smart. I hate that. It’s because I don’t have a need to show off myself and also don’t have the verbal skills to really demonstrate things that I know or understand or see.  I have anxiety over being viewed as stupid. As being “low” and “dumb”….I’m tired of people being condescending…

And lately I have to admit that I can’t do certain things. But, I can…in certain times….I struggle to accept defeat.