by Kate Goldfield
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 that Madeline (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 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 to 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 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 had hated it, and especially how bad the food had been. I imagined her in that hospital room, lonely and frustrated and…. well, the main thing I kept thinking was that she was alone.
Maybe that could partly be attributed to my own hospital stay 13 years ago, when the primary thing I felt was loneliness. I just hated 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 badly just to do something to help her, to make her feel better, to make her happy in some small way, 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 did — but that wasn’t enough.
Somewhere in that night, as I frantically wrote 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 had felt towards me when I was in emotional distress or had problems, and they wanted to help me, but didn’t know how. Or they 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. And there seems to be an unspoken agreement among NTs that they don’t need to put their feelings into words; their feelings, in certain circumstances, are automatically understood, since there are “typical” and commonly understood feelings for certain situations.
Now, take me. I do not know what the “typical” feelings to have in any given situation are. I have absolutely no clue! I need to hear verbally, in words, in very definite and descriptive and precise words, exactly what someone is feeling. I can’t tell from the person’s face. I can’t guess — or, if I can, it’s a very rudimentary guess. If I’m lucky, I 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 has proved disastrous to me, time after time. I would be crying, I would be revealing highly emotional things, and I’d look across to where the person was sitting and, as far as I could tell, they weren’t responding at all. They weren’t listening, I thought. They didn’t care, I thought. They didn’t understand, I thought — when, in fact, their nonverbal language was probably saying otherwise.
The feeling of aloneness and isolation that not feeling understood brought on made me feel 100 times worse. In fact, if often made me cross the line to hysterical, which would scare the other person and make the person become even more remote, 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 now. Relationships get ruined this way, over a simple misunderstanding of communication, over not being able to read each other, but thinking you can.
If I apply this new-found knowledge to the present situation, I can get a glimpse into what the other person was feeling. Empathy. Caring. Wanting to make things better, but not knowing how. Powerlessness. But the person didn’t know how to put these into words, and I honestly had no idea the person was 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’ve gotten 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 my 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 I do not have particular experiences to rely on to understand what a particular emotion feels like, then I might be able to understand it logically, might in time learn that this is what people are “supposed” to feel, but I may never really feel it, in myself or others. So many connections need to be made — and unfortunately, the experiences, friendships, and social experiences I need to make them are so often missing, not through anyone’s fault, but just because my autistic traits make me far more unlikely to make these kind of relationships in the first place.
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 that, for me, it might have to be learned. I think that all emotions 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, he or she will shut
down and not be able to connect with anyone or anything. So the key is to figure out a way to expose the person to new things while in his or her comfort zone, while the person is relaxed enough for his or her brain to be able to make the new connections. The autistic has to feel it’s safe to care about this person, has to feel “I like this person and she is not a threat,” and several months later, perhaps the autistic person will realize, “Hey, I actually feel connected to this person!” Fear and anxiety will prevent these connections from happening.
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 and 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. 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. 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 that it’s sometimes hard for people to see that you had trouble understanding the concept in the first place.”
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.
About the Author: Kate Goldfield is a young woman with Asperger’s Syndrome. A version of this post first appeared on her blog, Aspie from Maine, and is reprinted here by permission.