The E-Word

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The more I learn about autism, the more I realize that the word "empathy" needs to be stricken from the diagnosis and the discussion as it's the cause of an awful lot of confusion - and what's worse, I think it's the source of a lot of prejudice against autistic people.

In general conversation, empathy describes the ability to share feelings with someone else. In clinical terms, there is all kinds of stuff about how sympathy is about sharing feelings and empathy is about reading them - but even these definitions are not universal: just yesterday, I heard a police psychologist describe a psychopath who had thrown acid in a stranger's face as someone "who had no empathy," clearly meaning that she had no concern for the human being she hurt. In general, "lack of empathy" is not ascribed to people who are trying to communicate and understand feelings but have difficulty - it very often describes people who engage in criminal behavior without remorse.

I know in our family's case, one reason I didn't accept my son's diagnosis of Aspergers was the "lack of empathy" descriptor: sometimes he feels so strongly what another person feels that it is paralyzing; he can't watch movies or TV where people are shamed or hurt because to him it might as well be happening to him directly. As I learn more from you all, I'm finding that what the clinicians really mean when they say "lacks empathy" is really about an inability to read or understand social cues - an entirely different thing than the psychopaths described above.

Speaking as a recent outsider to this discussion, in the past I might have a different response entirely if I thought that people on the spectrum have difficulty expressing and reading social subtleties than if I heard they "lack empathy." In the first scenario, I might excuse behavior I considered odd as part of an understandable miscommunication. In the second, I might find certain behaviors I couldn't explain to be sinister or frightening, especially considering the context in which this phrase appears in the news (criminal behavior.)

I feel very strongly that parents and autistics alike should challenge the use of this word when it's used to describe people on the spectrum, I think it is at best confusing and at worst, slander.

I agree 100%. As someone with AS, I do have empathy but I don't do well at "reading" what others are feeling and I can't always adequately communicate what I'm feeling, despite better than average verbal skills. I really hate that "lack of empathy" thing.

~Kate

An ignorant person when I was a child described my personality as one of an axe murderer. They didn't know I was autistic. I don't know if the prejudice will go away just because the word is changed.

Certainly prejudices run deep, and I don't expect the world to change overnight over a single word. However, as someone who has some (for lack of a better word) empathy for people with mental illness and neurological disabilities, I could see where this word might make a difference to those who might be your (our?) advocates.

I have a lot of empathy, and I feel the emotions of the people around me, very strongly.

The misleading opinion of people who blog and write books on autism; often give the general public wrong information on the disorder. I was often told as a child that I lacked tons of human emotions.

It just needs to be changed to appearing to lack empathy, not actually lacking it. I'm apparently oblivious to other people's emotions. I just have trouble taking it into consideration, or figuring out what another person is feeling. That doesn't mean I'm a sociopath.

I agree too. Thank you for writing and expressing your thoughts around the issue. Hopefully by the time your son grows up the public will be more accurately informed and people with autism can be better understood, finally.

I do think that it is an important criteria to being diagnosed with AS. I notice a lot of people on this board have empathy for others. I for one, do not. I can sympathize with others to a high degree, but cannot and do not feel what they are experiencing. So, yes, I do believe lack of empathy is an important factor in me being diagnosed as AS.

The trouble is the lack of empathy theory comes from the "lack of Theory of Mind" theory, which is accepted by the experts/academics to be THE theory that explains what autism is. So you can't expect too much help from the mainstream academics/experts on that.

http://en.wikipedia.org/wiki/Theory_of_mind

And their idea took root and is now the dominant theoretical construct as to what autism is. Lots of others have built their ideas on top of this one, making it a sort of bedrock foundation (for lack of being challenged?) at this point.

P.S. You might want to google "instense world syndrome/theory" -- it's a sort of alternate theory based on the idea of hypersensitivity rather than the opposite:

http://www.thestar.com/article/633688

Empathy is not mentioned in the DSM-IV for autistic spectrum disorders.

I agree with what you have said about it, though. It's pretty clear to me that people on the spectrum are able to feel empathy, at least as well as NT's. (By the way, there seems to be this myth around here than NTs are always feeling empathy. It's not true. Empathy is something people will only feel in certain situations. It's not something that should be expected). I think the thing that can make it seem as if AS people cannot feel empathy, is that they often aren't able to read the other person's feelings.

So, let's say person A is feeling very sad because her cat died. Person B walks into the room and sees her sobbing. Her shoulders are moving up and down, her hands are over her face, and she's making some little sounds. He doesn't know about the cat. He also doesn't read body language very well at all, so maybe he even thinks she's laughing. (Sobbing can seem like laughter, even to NT's sometimes, until you look closely.) So he makes a light-hearted comment, and goes about his business. Person A notices that, and thinks, "what a cold-hearted jerk!"

On the other hand, if Person B knows that Person A's cat has died, and knows that she loved her cat very much, then Person B will probably feel sad for her loss. He might try to comfort her, but he might be overwhelmed by the feelings, and not know what to do. He might become uncomfortable and just try to get away from her, which might appear as though he doesn't care.

This is what I see with my AS son sometimes. He gets overwhelmed by the strong feelings, and isn't so sure what to do, so he might say that something is "stupid". If someone is crying, he might yell, "Shut the hell up!" It's not that he's insensitive, it's that he's very sensitive, and all that emotion is too much for him, and kind of makes him panic.

Of course, everyone is different.

The thing is, if I can't tell what the other person is feeling, it's difficult to feel empathy or sympathy for them. There are only two people who I have a nearly instant (and often overwhelming) empathetic reaction to reliably, and otherwise it's exceptionally rare and only with experiences where I have my own burned into my memory.

It's not that I lack empathy, it's just like with everything else related to that, there's a processing delay in getting it to my brain if they're the one experiencing it and especially if I don't have a really accurate reference point to base it on. Sympathy I feel very often though, I don't really have any trouble with it at all once I can figure out that they would benefit from it.

For example: when somebody breaks a bone on TV in say an NFL game, everybody else in the room cringes because they're experiencing it as well empatheticly. Or something greusome happens in a horror movie, they do the same thing. In either case, I don't flinch one bit and am not bothered by it at all. On the other hand, when I was grocery shopping a few months ago I saw a autistic child having a meltdown and almost had one myself on the spot and had to leave the store for 10-15 minutes and then come back and finish shopping.

Now, if this is caused because I'm oversensetive to emotions and the processing delay is a coping mechanism by my brain, or if I'm undersensetive to emotions to begin with, I don't know and I've been like this since before I could speak, so to me it doesn't matter terribly much in my day to day life.

I agree....I have very strong empathy...(well...... sometimes...depends on the person/situation)

I also think it is a murky distinction between empathy and sympathy

Not really, they're quite distinct.

Sympathy: "I am so sorry for your loss."

Empathy: "I feel your pain."

Sympathy is the wish to assist someone else who is in pain or otherwise experiencing an unpleasant event. Empathy is actually feeling the same pain or feeling as the other person.

Most people feel empathy and then feel sympathy because of it, so they're intertwined. However, there is a distinct neurological difference between the two. See here (although I am loathe to send you to Wikipedia, it's the best I could do on short notice): http://en.wikipedia.org/wiki/Mirror_neuron

I beg to differ:






I totally disagree this aspect should ever be removed from the DSM. It is but one of several possible symptoms, and isn't necessarily required to have AS. Eliminating it would exclude many who qualify, that have only two of the above symptoms, and lack of social reciprocity (or empathy) happens to be one of them.

That would include my own son, who is most definitely severely AS. No way are they ever going to dump that from the diagnosis.

Removing it because of misunderstanding coming from people who just don't get it is ridiculous. The answer does not lie in eliminating a long standing symptom. The answer lies in educating people.

There is quite a lot of misinformation about "empathy" in autism/AS. The common misconception is that we do not have any concern for others kind of like narcissistics or antisocials. It makes us sound very selfish & maybe even dangerous. Some also think it means we are unemotional as well. The truth is that some(or maybe even a lot) of us here(especially me) are very caring & sensitive but we may NOT express it the correct way at the appropriate time. This misunderstanding has caused lots of problems because the general public in some areas believes that people like us are bad but also some people who are autistic may not be recognized as being autistic because they are emotional; the parents, family or a doc who doesn't know much about autim may think that the person has something else instead. I wish this misinformation would get cleared up in DSM & in public awareness