Adults With Asperger’s and Too Much Empathy
Very unlike the “traits that define” Asperger’s Syndrome – or more recently – as it is lumped in now in the DSM 5 with Autistic Spectrum Disorder – a lack of empathy is just not an accurate trait to list in consideration of diagnosis.
The first issue is the scales and tests to diagnosis Asperger’s in the first place, especially since what is currently available has lacking measuring ability of attributes (feelings) like empathy. Secondly, there are no diagnostic scales or tools to recognize Asperger’s in its many expressions in females. It’s still thought of being mostly a “male” thing.
As an adult with Asperger’s who was diagnosed at the age of 40, but really, coming to that awareness explained so very much of my childhood and life experience that I had never had a way to truly understand before being diagnosed. I know that I do not lack empathy. In fact, I’ve known for longer than I have known I’ve had Asperger’s Syndrome all my life, that I have too much empathy.
Each person with Asperger’s (AS) is an individual. There are differences in how empathy is felt in those with AS compared to Neurotypicals (NT’s). My sense is that NT’s feel it and fairly spontaneously express it. They express it to each other, relatively speaking, in ways that are easily identifiable and expected and therefore they have a common language of empathy.
That’s what I’ve always believed the biggest difference when it comes to this question of empathy and AS vs Neurotypicals and their empathy lies. It doesn’t have anything to do with people with AS not feeling empathy. It has all to do with how or when or to whom that empathy will be expressed, how and when.
People with AS, and I know this from my own experience, process all feelings and information differently than NT’s. That’s not to say all with AS are the same. Just as all who are NT are not the same. However, people with AS do process information and feelings differently from those who are NT. This means that there may be a delay in expressing what is felt or a difficulty in expressing it coupled with an NT expecting to have it expressed to them the same way as other NT’s would express it.
As an adult with Asperger’s I know that it takes time for me to process information. I do that rather rapidly but I still have to run it all inside first before I start to share it. The same is true of emotions. I will run them inside, feel them, and then express them. I can relate to feeling, as others have described (online youtube videos and blogs) too much empathy interpersonally and an even deeper over-whelming empathy in the context of empathy for things that happen to people or in humanity – feeling as equally deeply empathic about the later as the former. Something that many NT’s don’t seem to feel as much.
For example, on 9/11, when we first heard of the attack on the U.S. others I was with reacted, of course, but were pretty focused on phoning their loved ones. Even though we were in Ontario, Canada, we aren’t really that terribly far away from New York, New York. Nobody knew what was going on as that began to unfold. Unlike everyone else I was with who started running to phones to call loved ones with the sense that they needed to get home, pick up kids from school, get together and do what? Be safe? Be safer? I don’t know to this day. Why not?
Because my reaction was one of experiencing a panic attack because I was overwhelmed with the feelings of humanity that day. All humanity, generally, and specifically those suffering directly, even though at this point, I’d still only been told what was going on and had not yet seen anything on television at that point.
It was a deep extreme empathy that was for all of humanity as all of humanity (and the years have born this out) was attacked that day and that day is a day that has changed our world in ways that are not for the better.
I felt so much that I didn’t think about myself at all. I was not at all thinking or feeling the same things or in the same ways with the same focus as those around me who were all NT’s. I wasn’t thinking I needed to call someone and be with them or run somewhere. I felt the agony of humanity and I felt so palpably the agony of that day and all that it meant in human suffering.
Yes, this is just one example, but likely way more individuals with Asperger’s, feel too much, it’s not that we don’t have empathy or that we have not enough empathy.
I have learned how to grow and change and push boundaries in terms of how Asperger’s is traditionally thought to be. I know others have done this in their own ways too. We don’t get rid of Asperger’s (frankly I wouldn’t want that at all!) but we can continue to grow and to further extend the bridge of communication to and from NT’s and ourselves.
I experience being an adult with Asperger’s as having a different ability. Yes, at times, it can be challenging. I have also since 9/11 really learned how to have better emotional boundaries with all I feel for others and that are the feelings of others. I still feel it and it can still overwhelm me but I do have boundaries and ways of dealing with it more effectively. I think what I feel that is too much empathy (though I don’t express it as such) I have learned to sit with, feel, process, and move through much more quickly. I wouldn’t trade that for anything even though at times it is quite painful. To me, it’s me. It is also a profound connection to humanity that I have always known and would not want to change.
Feeling for others, even on the other side of the world, that I don’t know or will never meet, as deeply empathic as I can feel for someone close to me (though the feelings aren’t exactly the same) matters greatly to me.
I wonder, is part of the problem with empathy in humanity that not enough NT’s empathize enough with humanity beyond their loved ones? Not saying they don’t care but it seems that if we are trying to measure this and compare this that NT’s would lag behind many with AS when it comes to empathy for humanity to such a profound level it hurts in ways that are difficult to describe.
We need to give each other room to be who each one of us is. We need to be willing to communicate to understand how each other collectively and individually feel things and express things or feel things and don’t necessarily express them the same way as we continue to honour our differences respectfully.
© A.J. Mahari, January 17, 2015 – All rights reserved.
Individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much
A groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy—rather they feel others’ emotions too intensely to cope.
People with Asperger’s syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is in fact a response to being overwhelmed by emotion—an excess of empathy, not a lack of it?
This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with new thinking about the nature of autism called the “intense world” theory. As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an hypersensitivity to experience, which includes an overwhelming fear response.
“I can walk into a room and feel what everyone is feeling. The problem is that it all comes in faster than I can process it.”
“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.” Virtually all people with ASD report various types of oversensitivity and intense fear. The Markrams argue that social difficulties of those with ASDs stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10. If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed’s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.
But of course, this sort of withdrawal and self-soothing behavior—repetitive movements, echoing words or actions and failing to make eye contact—interferes with normal social development. Without the experience other kids get through ordinary social interactions, children on the spectrum never learn to understand subtle signals.
Phil Schwarz, a software developer from Massachusetts, is vice president of the Asperger’s Associaton of New England and has a child with the condition.
“I think that it’s a stereotype or a misconception that folks on spectrum lack empathy,” he says. Schwarz notes that autism is not a unitary condition—“if you’ve seen one Aspie, you’ve seen one Aspie,” he says, using the colloquial term. But he adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”
So why do so many people see a lack of empathy as a defining characteristic of ASD? The problem starts with the complexity of empathy itself, which has at least two critical parts: The first is simply the ability to see the world from the perspective of another. The second is more emotional—the ability to imagine what the other is feeling and care about their pain as a result.
The fact that autistic children tend to develop the first part of empathy—which is called “theory of mind”—later than other kids was established in a classic experiment. Children are asked to watch two puppets, Sally and Anne. Sally takes a marble and places it in a basket, then leaves the stage. While she’s gone, Anne takes the marble out and puts it in a box. The children are then asked: Where will Sally look first for her marble when she returns?
Normal four year olds know that Sally didn’t see Anne move the marble, so they get it right. By 10 or 11, mentally retarded children with a verbal IQ equivalent to three-year-olds also guess correctly. But 80 percent of 10-11 year-old autistic children guess that Sally will look in the box, because they know that that’s where the marble is and they don’t realize that other people don’t share all of their knowledge.
It takes autistic children far longer than others to realize that other people have different experiences and perspectives—and the timing of this development varies greatly. Of course, if you don’t realize that others are seeing and feeling different things, you might well act less caring toward them.
But that doesn’t mean that once people with ASD do become aware of other people’s experience, they don’t care or want to connect. Schwarz says that all the autistic adults he knows over the age of 18 have a better sense of what others know than the Sally/Anne test suggests.
Schwarz notes that nonautistic people, too, “are rather lousy at understanding the inner state of minds too different from their own—but the nonautistic majority gets a free pass because if they assume that the other person’s mind works like their own, they have a much better chance of being right.” Thus, when, for example, a child with Asperger’s talks incessantly about his intense interests, he isn’t deliberately dominating the conversation so much as simply failing to consider that there may be a difference between his interests and those of his peers.
In terms of the caring aspect of empathy, a lively discussion that would seem to support the Markrams’ theory appeared on the Web site for people with ASD called WrongPlanet.net, after a mother wrote in to ask whether her empathetic but socially immature daughter could possibly have Asperger’s.
“If anything, I struggle with having too much empathy” one person commented. “If someone else is upset, I am upset. There were times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.”
Said another, “I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”
Studies have found that when people are overwhelmed by empathetic feelings, they tend to pull back. When someone else’s pain affects you deeply, it can be hard to reach out rather than turn away. For people with ASD, these empathetic feelings might be so intense that they withdraw in a way that appears cold or uncaring.
“These children are really not unemotional, they do want to interact, it’s just difficult for them,” says Markram, “It’s quite sad because these are quite capable people but the world is just too intense, so they have to withdraw.”
Article written by Maia Szalavitz
Maia Szalavitz writes about the intersection between mind, brain and society for publications like Time online, the New York Times, Elle and MSN Health. She is co-author, most recently of Lost Boy , the first memoir by a young man raised in Mormon fundamentalist polygamy, Brent Jeffs. She is senior fellow at Stats.org, a media watchdog organization.