Saturday, July 24, 2010

On the Matter of Empathy

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 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.


  1. I'm really glad you wrote this. You gave me an honest, inside look on what might be a similar experience for my son. And you're right: had you not written that out for me, I *never* would have even thought about it. You will only help people with your words. And in my opinion, what you wrote about your loved one wasn't offensive at all. It seemed carefully thought out and respectful to me.

  2. I must say, I'm the opposite. When I get any flood of emotion, my ability to understand language goes out the window, so I hate people talking to me at all when I'm upset. The best thing to do for an upset me is to just sit and BE. Deep pressure is good; other touch is not. Typing is fine, and sometimes helps me to process my emotions and figure out what they are. But talking... no thanks.

  3. A great article. I'd never really given much thought to what I wanted to get from NTs but you're right. I would like a visible or verbal reaction sometimes.

    I usually get the deep emotional feelings (ie when someone is badly hurt) but I often miss the less intense emotions.

  4. I have always thought that *everyone* empathizes based on personal experience of emotion; that any empathy felt comes from being able to feel some kinship of experience (even if the experiences were not identical, they'd have been similar enough to import this sense of shared...something). Perhaps this is not true? Do NTs just experience empathetic emotion even if they have never had any sort of experience with that feeling or circumstance? You've given me things to ponder.

  5. Shae, I'm not sure. I would venture to guess that you do need to have had that experience to empathize, but the point I'm making is that perhaps a lot of Aspies haven't had the social experiences most of the population has had, and therefore can't empathize on a lot of things that it would be expected we would be able to - because of this lack of experiences. I'ts just a guess. What do you think?

    Lydia, I know that this does not apply to everyone. Thank you for pointing out that, because my feelings will only apply to one subset of people if even that. But I am curious to know who can relate.

  6. This is a really good description. How do we connect with people whose experience is so different from our own unless they are willing to verbalize and help us understand what we don't? That willingness would have to stem from their knowledge of our estrangement from neurotypical culture. In my large family, I always felt like I was invisible except for the embarrassment of inappropriate expression and/or degrees of feeling. I had grandparents, uncles, and aunts who were kind to me with whom I never exchanged more than a few words. It doesn't leave you any way to connect unless the other person understands why you are not engaging. I wonder if it even matters whether we think of autism as a disorder if someone who is neurotypical has to make more of an effort for us (it seems to them that they are coming more than halfway to meet us). In my head, whenever someone dismisses me because of an error in communication, I still hear the echo of "not worth it (the effort)." This must be why getting a diagnosis is such a relief. There really isn't much to keep mild autists from falling through the cracks if our parents/caregivers lack the extra resources of time, money or energy.

  7. I agree with you, eaucoin. I can especially relate to the embarassment. In my life, I have felt a very large amount of embarassment, but usually decided to keep pursuing social matters anyway. It is probably why I am as far ahead (so to speak, relatively speaking) as I am, but it wasn't and isn't easy. I figure I want to join the social world no matter how embarassed and "other" I feel, because I have a right to be part of it, I have a right to be me, and I want to. But it definitely isn't easy.

  8. "Vicious cycle" - yeah. I look for atypical situations, such as a death in the family, because people are more likely to say what they really mean. Past misunderstandings might then be straightened out. (But wait until the gathering after the funeral.)

  9. Very insightful, Kate. I definitely agree that emotions and facial expressions need to be learned for many people on the spectrum - my son has certainly proven that!

  10. This is very helpful for me. Now I am learning what my Aspie boyfriend needs from me. And what I probably won't always get from him. Sometimes, on my side, it feels one-sided. Now he realizes he needs to also let me know what's going on in his head.

  11. This post is incredibly helpful. It seems although you and Lydia have different desires at times when you are upset, this at least gives me the concept of asking my child,

    "What is it that you need right now?"

    It also opens up the possibility of discussing it when she is calm, for future reference.

    Thank you so much for writing this even though you were tired and hot!

  12. Very interesting; I love it!

    I think the reason for the discrepancies between ASD & NT empathy is the emphasis on Verbal vs Nonverbal cues.

    Feelings are reactions to events. If no event occurs, there will be no feeling generated. Those cues are the events.
    In the case of empathy, those cues are generally nonverbal, which is the weak point of ASD.

    I don't know if I would call it developmentally delayed... Only because neither person is able to properly understand the other. It just so happens that the typical response is that of the majority, NTs. But that is a future argument, and not so relevant, here.

    I've never been able to stand the Theory of Mind argument, is always seemed lacking. This is a far more accurate description of empathy. It goes both ways, ASD don't understand NT, and vice versa.

    Thank you for this!

  13. I have not been diagnosed with Autism officially. But after a lot of education, I have a lot of friends and family that agree that I am autistic. All that to say, I frequently feel like I am more of a borderline case than others.

    But what I WANT from NTs and what I NEED from NTs are two entirely different things. I WANT to be there for them and them for me, but when making a connection, I feel compelled to ask a gazillion questions about their behavior and if they don't answer, I go a little crazy inside. So on that level I understand why your friend gets upset at you for not knowing how he feels, he just wants the magical unspoken connection, but he is still there for you because even though it bothers him, I think he understands what you need too.

  14. Hello Kate,

    you wrote:
    "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."

    "but when making a connection, I feel compelled to ask a gazillion questions about their behavior and if they don't answer, I go a little crazy inside."

    I wonder, how do they think if they have no words?

    It has always bothered me greatly that people can't answer simple questions. They can tell you what they think you should do, but not why.

    So many issues with NTs. I used to get into a lot of trouble all the time because I couldn't accept that I would have to comply to a behavioral patterns that I felt were illogic, foolish and sometimes even harmful, and when they also couldn't give me their reasons for being so stubbornly repeating them for no apparent reason, I reacted like you express: It maddened me!

    I used to think they simply wouldn't tell me, that it was a matter of ill will, so to speak. And some of the time I know that's what it was.

    Eventually I changed my focus and stopped hoping to 'connect' with them. It turned out that there're other ways to be around them, without necessarily having to be or feel like them.

    But I guess it's also a matter of how good one is at imitation, for that's what it amounts to.
    On the other hand, if you can learn some basic behavior patterns, mannerisms and mimic, you'll find they're much more willing to accept you as one of them than you'd have ever dreamed. And that can make it fun to be with them, but it'll never create any true connection.

    If I was you, I would try and focus less on connecting with NTs and more on just learn the basics I mention above. Don't except too much, and turn your attention towards people who can understand you, like others with Aspergers. I have several friends with AS, one of my best friends has AS, and I live in an area where there're no groups or network on the Internet, only a state generated website. I found them on International fora like WrongPlanet (but you know that one already. I found your link there *S*).

    Thanks for sharing! Good luck ahead!...

    Ps. Don't stop writing, you're great at describing many of those things that can be hard to explain.

  15. Hi there, I am an NT interested in an Aspie. He's funny, smart, quirky and, of course, honest. We've become quite close in a very short amount of time. These posts have been incredibly incredibly helpful.

    I think our communication works because I am very frank and will tell him verbally and specifically what I think. He is also extremely self-aware so if he doesn't understand something I've written, for example in an email, he'll just say. I'm not going to try to decipher that. He is teaching me a lot about empathy.

    I guess like any good relationship between two people it needs good communication. And where we communicate differently (NTs do, sadly, rely a lot on lying or bending the truth, or subtlety)we have to really walk the other person through how to communicate effectively. Obviously, I am spending a lot of time on these sites to understand more.

    Be patient with us. We often don't know what we don't know.

  16. What a great comment, thank you for posting.
    Good for you for trying! I love this comment "We often don't know what we don't know. " True of all of us, Aspies and NTs.

  17. lol

    NTs are developmentally delayed in understanding Aspies. ;-)

    Thank you for your wonderful post, and wonderful explanation.

    I realize this might seem stupid, but, for me, a supplement called Noopept helps a lot. I take it when I know I will plunge into a social situation. It seems to help me make the "connection". For probably the same reason it also seems to correct my awkward gait and other things as well.

    But I can totally relate to what you wrote!