I very much want to write this entry. I have not been able to focus of late. I believe it is the air. It is driving me crazy. I feel like there is a physical weight on my body and mind and it makes it hard to even type or keep one train of thought for very long. But for some reason even typing continuously lately, much less doing that WHILE keeping a continuous train of thought ,has been hard. So, I am going to try very hard to do this.
This is a topic that has been brewing in my mind a lot lately - actually, on and off for the last month. I very much want to get it down on paper, so to speak.
The story starts on the night that I learned Madeline (pen name for my roommate), had gone into the hospital. She is 93 , and her ankle was swollen and bleeding. I did not know this all day Friday, until M (her son and my other roommate) came home around 9:30 to tell me.
That night, I was in a bit of shock. I felt so bad for her. I care very much about Madeline and am closer to her than a lot of other people. I feel a connection to her even though there's not a lot we have in common on the outside. So , that night, I was feeling very badly for her. A hospital is not a nice place for anyone, but especially not when you're 93. I kept remembering the stories she had told me about one time years ago that she had been in the hospital, and how much she hated it, and especially how bad the food was. I imagined her in that hospital room, lonely and frustrated and.... well, the main thing I kept thinking was alone. Maybe that could partly be attributed to my own hospital stay, years ago, 13 in fact (!!!), where the primary thing I felt was loneliness. I just hated beyond belief being there while everyone else was living their lives. It was not a pleasant feeling. So accurate or not, I ascribed it to her. And I thought of the food, of course. And I felt a sense of....powerlessness, of wanting so bad to just do something to help her, to make her feel better, to make her happy in some small way, but knowing there wasn't anything I could do. I couldn't help that she was in the hospital, of course. I could write her notes and send her small gifts - and I would and did - but that wasn't enough.
And somewhere in that night, as I frantically IMed disjointed thoughts to a friend while trying to process everything, I realized something. This feeling of wanting to help and feeling bad for someone ... a feeling that it seems for many people is hard to put into words... is probably what OTHER people felt towards me when I was in emotional distress or had problems, and they wanted to help me, but didn't know how. Or thought there was nothing they could do. In that instant, I caught a brief glimpse of what I SHOULD have been feeling all of those numerous, probably hundreds of times that people had tried to unsuccessfully comfort me. Why was it unsuccessful? Because for whatever reason, most people can't put their feelings into words. There seems to be an unspoken agreement among NTs, furthermore, that they don't NEED to put their feelings into words, because their feelings in certain circumstances are automatically understood, since they are "typical" (???) and commonly understood feelings for certain situations.
Now, take me and most other ASD people. We do not know what the "typical" feelings to have in any given situation are. We have absolutely no clue!! We need to hear verbally, in words, in very definite and descriptive and precise words, exactly what someone is feeling to have any idea in hell what they're feeling. We can't tell from their face. We can't guess - or if we can, it's a very rudimentary guess. If we're lucky and experienced at this, we can make a logical assumption, but logical assumptions, I have to say, are not very comforting.
I have always needed to hear the WORDS when someone is trying to comfort me, but here's the thing. Most people don't have words. And that proved disastrous to me, time after time. Because I would be crying, I would be revealing highly emotional things, and I'd look across to where the person was sitting. As far as I could tell, they weren't responding at all. They weren't listening. They didn't care. They didn't understand. (When in fact nonverbal language was probably saying otherwise.) This feeling of aloneness and isolation that this realization - they don't understand- brought on made me feel 100 times worse. In fact, if often made me cross the line to hysterical. Which would scare them and make them become even more remote (and brand me as the world's biggest baby), which would reinforce the cycle, and it'd go on and on .... sometimes only until I had exhausted myself in hysterics. I shudder to think about it. Relationships get ruined this way. Over a simple misunderstanding of communication. Of not being able to read each other, but thinking you can.
If I apply this newfound knowledge to this situation, I can get a glimpse into what they were feeling. Empathy. Caring. Wanting to make things better, but not knowing how. Powerlessness. But they didn't know how to put these into words, and I honestly had no idea they were feeling it. It might sound thick, but it's the truth. Autism is in so many ways a disorder you have to live out for an awfully long time before you figure out all the many and myriad ways it affects you and the people in your life.
I have a pang of sympathy and understanding for these people in my life now, when I think about this. Maybe a fleeting feeling of connection. But that's all - fleeting. This knowledge is still too new. It's like I got a glimpse of it and that's great, wonderful, but it will take more than a glimpse, I'm afraid, for me to be able to put it in practice. But I will try. I will try to remember what I felt like about Madeline the next time I'm trying to figure out how someone is feeling about me. I don't know if it will work, but I will try.
Why is autism all about having to make logical connections in the place where in others, emotional connections exist? I don't know, and I'd really like to. But it's like building the brain from the ground up, and if the autistic person does not have particular experiences to rely on to understand what a particular emotion feels like , then they might be able to understand it logically, might in time learn that this is what people are *supposed* to feel, but they will never really feel it, in themselves or others. And this lack of emotional feeling about others - this lack of connection, this wall - is in many ways it seems the heart of autism. So many connections need to be made in the autistic brain - and unfortunately the experiences, friendships and social experiences an autistic person needs to make them are so often missing, not from any fault from the parents or others, but just because the very traits an autist poses makes them far more unlikely to make these kind of relationships.
You may think I am saying that autistics don't feel emotions towards others. I am NOT saying this. The myth that autistics are not capable of empathy is pure bunk. BUT, I am beginning to think, it might have to be learned. I think that all emotions autistic people (or most autistic people) feel towards others are based on emotions they have felt themselves; and if they have not felt those emotions themselves, because they are missing the social experiences to have created them or are just developmentally behind, they won't feel them.
So this makes it critically important that people with ASD be exposed to a wide range of experiences, BUT. Shoving them into experiences unprepared isn't going to do much good; if a person is scared and afraid, as many ASD people are about new experiences, they will shut
down and not be able to connect with anyone or anything. So the key is to figure out a way to expose them to new things while they're in their comfort zone, while they're relaxed enough for their brain to be able to make the new connections. I.E. it's safe to care about this person; I like this person; she is not a threat; several months later....hey, I actually feel connected to this person! Fear and anxiety will prevent these connections from happening. But how to do this? I have no idea. Sheer, dumb luck is what it seems to come to; unless you can use your child's speical interests to manipulate or set up friendships or opportunities for them in places they feel comfortable....it would be a hard thing to do, it seems.
Okay, needed a little break. Let's see if I can finish. A good example of this is a person who is very close to me who I shouldn't mention in case this story is at all offensive, which is not intended to be. For years, I have called this person up and talked to him about a great many topics. I love him very much. And he usually understands me quite well, a fact I find quite comforting. But there is one thing that he doesn't understand, which has always puzzled me. If I am upset over something, I want people to react verbally and/or visably - NOT because I want to "manipulate" them in some way or make them feel worse than my news might already make them feel, but so I can UNDERSTAND what they're feeling and I don't have to feel so alone. It seems obvious to me , but for some reason to many it is not. ANyway, so many times I talk to this person and I mention something I am upset about. If this person does not react, or does not verbally tell me how it makes him feel, I often get very upset, because I have no idea what he is thinking. For all I know he could be thinking very critical things of me like that it's all my fault. So I ask him to tell me how he feels, and he says "You KNOW I feel bad for you, you KNOW how I feel, why are you always asking? You should understand!" He seems to feel very firmly that I should know his feelings. But I don't. I don't know. And even if he's been able to understand and sympathize with my feelings a hundred times before, how do I know he does this time? This has always bothered me, and of course him too. I suppose it is two different ways of thinking.
It seems that not only is it very hard for autistic people to understand that there is a different way to think, it is just as hard for non-autistic people to understand that autistic people, especially ones that are seemingly very smart in other areas of their lives, could not understand something as basic as this.
Again. You learn by doing. You learn by experiencing. And for some people on the autistic spectrum, it can take 20 years or more to even start to understand and experience something most kids probably do at age 4 (or whenever). That's why they call it a developmental delay, I suppose.
I have heard many ASD people say they have trouble connecting with and feeling close to others. I feel that if you protect yourself too much an never get close to anyone - even if you don't realize you're protecting yourself- , you never feel what it is like to feel close to someone - and so therefore you can't feel what it is like for them to be close to you. If that makes any sense. It is not ASD people's fault that they have trouble making friends - but it does seem to be a vicious cycle in many ways. You can't just turn defense mechanisms off when someone asks; I think the situation has to be right for them to fall away.
Most people with ASD are quite smart in other ways, though. They find ways around their blind spots. The therapist who diagnosed me told me something like, "Instead of understanding things intuitively, you make these logical connections in your brain - but you make them so fast, it's sometimes hard for people to see that you had trouble understanding the concept in the first place." Or something like that. The only problem is - logic can only take you so far.
I wasn't a big fan of this therapist in some ways, but I always thought that was an intelligent statement. If I ever get the ability to go into buildings back, I would really like to see a therapist. I have been recommended one who sounds good, too. Maybe in the fall when the heat isn't stressing me out so much I could try. Maybe.
Anyway...more thoughts about my life. These do not apply to all people with autism; they are just my life and experiences as I see them.
3 hours ago