Where Sensory Integration & Aspergers fit into the story

This is Carolineine... I am going to include this for Pilgrim...something that she wrote. She in particular has problems with Asperger's Syndrome and Sensory Integration. It is mainly her in particular, although Mae has problems with those things a little bit. I have wanted her to talk about this for a long time.

Carolineine wants me to write this. Her idea about writing facts and then writing positives. She had this idea a few days ago. For me to write about myself because I won't talk about myself. Not just in therapy but anywhere else either. I think maybe, if I can make it sound less stupid if I can also write things I do to help myself too.
So ok here goes. I think I sound so dumb though.

Facts 1st.

I don't have any sense of where my body is in space, unless I am either 1)weighted down by something or 2)someone is holding my hand or hugging me. Maybe that’s why I like hugs and like wearing heavy clothes and like heavy blankets. Ok.
I fall down and trip a LOT and run into things a LOT because I can’t figure out how much space I take up and also I just don’t see things.
I know I hear words wrong a lot. Not just from my messed up hearing in my right ear from earaches. But I mean, I hear words messed up, and sometimes in the wrong order. I know logically that DH didn’t say to me yesterday, “Hamsters progress is going in a hat” but that’s what I heard. I think that I mis-hear things a lot more than I realize. I don’t know why that is though. But maybe that is why I get messed up a lot-- I don’t know. I guess it probably doesn’t help. If people are talking and walking by at the same time, I hear them wrong. If they are talking and turn their head, I hear them wrong. I say “What?” a lot to people, I think it bothers them. But if they start talking, I know I miss the beginning of their sentence when they start to talk, and if they make their voice sound funny to be expressive, I start to hear things wrong again. I have to tell DH a lot “I didn’t understand.” I think he gets frustrated. But I didn’t understand his words. (Just right now he walked past me while he was talking, he changed his voice to a higher voice, and I heard him say--- I uhhhhhhh aaaa ah com.” I said, “I didn’t understand what you just said.” He said he was saying “It said on tv, “I love alpacas dot com.” OH. OKAY.
It feels like my body is falling apart into space if I’m not weighted down. I don’t know where my head or arms or hands or feet are or anything. I don’t feel them. I don’t know why. The occupational therapist at school explained to me why once but I can’t remember why she said that happens.
I wear sweat shirts and heavy clothes all year because it feels safer and holds me in. Like it feels like my body isn’t so much falling apart.
People seem like they give off energy and waves of sound and feelings off them. I can feel it and see it and hear it off them. Sometimes its loud and sometimes its soft, like depending on the person. If there’s more then 1 person around its too much to handle. Wearing heavy clothes seems like it absorb some of their energy so it doesn’t all hit me so much.
My brain takes in everything, or shuts down and takes in nothing when it gets overwhelmed. It seems like I can’t filter out any thing. Or any sights. Its like I can’t figure out what to listen to or what to see so I hear and see everything. DH always tells me to pay attention. But the thing is I’m always paying attention… I mean, when I’m here and not disappeared, you know? But I think I must pay attention to the wrong things. Like I look at lights and get lost in them or in the sounds of birds outside windows or get distracted by the sounds the lights make at the store or the way somebody’s clothes fold over and make wrinkles. But I think I’m supposed to only pay attention to…well, DH says like watch where I’m walking and listen to him. Or he always tell me to make eye contact with people and say hello or whatever. I keep forgetting that.
A lot of things that people say don’t make sense. Their sentences I mean. They use words and phrases that don’t really go together, or they’re not clear. I see everything in pictures in my head, and with little printed words going across this little screen. But people say things that don’t sound right. I get mixed up. My brain is literal. I have DH explain things to me a lot, like expressions? But I still don’t understand them. I have this book, it was 1 of my favorites from when I was little, I want to show you sometime. I liked it a lot because it was about how I thought. I think it might supposed to be a joke book but it isn’t to me. Its called Chocolate Moose for Dinner.
There is the huge problem with time and schedules and changes in schedule which causes total meltdowns. I hate that the most I think. Because people don’t get that at all. People understand it if you’re a little autistic kid, people know that little autistic kids have problems like that. But if you’re a grown up and you’re a teacher its not ok to be that way.
I can’t figure out peoples’ faces. Faces are really scary on people. They move all the time, like eyes and eyebrows and mouths and cheeks. They’re constantly moving and as soon as I think I might know what one look means, the faces changes right away. I don’t understand looks at all. There is this program for people to learn about facial expressions at this website called do2learn.com it’s a game about feelings, and there is a game about faces. I do those 2 a lot. There is a face on the game you can play with, to make it look angry/frustrated/ sad/ …whatever other feelings there are. And there is a game that you look at peoples’ faces and try to guess who is feeling what. I don’t get them all right yet but I do get some right now after practicing a lot.
Also I don’t know why I can’t recognize people in pictures if they have different looks on their face or if they have different hair cuts or glasses or something. They have to be different people to me. I don’t know why.
For some reason I understand how to do +.-. X, and division but I can’t do them right. I don’t know why because I am smart. I am really good at knowing how words are spelled, but not at numbers, I can’t remember numbers or how to do things with numbers. Carolineine and Missy did college, they did statistics and calculus 2 and everything, and I just don’t know how they did that.
This is a big secret but a lot of times when I talk to somebody I don’t know what I’m supposed to say at all. But I know I’m supposed to say something. I just either let Carolineine say something instead or if I get really desperate I say something I heard I have memorized. Or I say something I know someone else would say even if I don’t understand it.
Claire knows how to do sign language and she can understand when people talk sign language too. But its weird because, I know sign language, but I have a really hard time understanding it. You have to watch faces to understand. It has to incorporate a lot of facial expressions. And I do not understand facial expressions at all except for happy, sad, and mad.
I also don’t understand at all why if Claire or Carolineine or Jo or Missy can do something, why can’t I do it? If we are all supposed to be part of the same person, how come we don’t know all the same things? How come we aren’t all sick at the same time? How come we don’t all get a headache at the same time? How come Missy can do calculus but Mae can’t even add yet? How come Mae talks like she does when none of the rest of us ever talked like that at all?

Posted by pilgrim | Filed under:


that was very well written, pilgrim. thank you for sharing.

in non-DID people, at least for me, we tap into different parts of ourselves in particular situations. when i'm at work i am very forceful and confident about my words but at home i am quite introverted and prefer to be alone, and will not even answer the phone.

i believe that all people tap into parts of themselves as the situation warrants. it seems that the difference with those that have DID is that they have splintered into different people as well. so where i tap into parts of me, you rely on those beside you that have the skills you need to cope and succeed.

i hope that as your awareness of those inside grows that you will learn from them and grow and become more confident.

lastly i wanted to tell you that you are not alone. i very often mishear what people say like i've been dropped into the middle of a conversation. i wish that i had some tips for you but i do exactly what you do .. i just say "what did you say?" or "i didn't understand that".

I am the "host" of a DID system. Several of our members have sensory issues too. Our 5 yr old has so much trouble understanding what people say, that she doesn't even try and speak. Our old therapist used to hold her hand, and then she could focus better on understanding words. Our most competent at work adult cannot bear to be touched, cannot handle noises that most people can't hear, and also has trouble with spoken language. Our 13 yr old has a tendency to "crash" into things to feel the impact, and she's cutter because "it makes the bad feeling in my skin go away". I've been reading alot about sensory integration, and it seems that it can develop if there is a lack of normal childhood sensory experiences, as there was for us. Good luck getting all your stuff sorted out too! And thanks for putting your story out there.


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