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Asperger's theory does about-face

Hannah Capps

Hannah Capps

Bluelighter
Joined
Jan 29, 2006
Messages
1,455
May 14, 2009
Maia Szalavitz

The Daily Beast


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 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 the "intense world" theory, a new way of thinking about the nature of autism.

As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, the theory suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency but, rather, a hypersensitivity to experience, which includes an overwhelming fear response.

"I can walk into a room and feel what everyone is feeling," Kamila Markram says. "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. We're saying exactly the opposite: They feel too much."

Virtually all people with autism spectrum disorder, or ASD, report various types of over-sensitivity and intense fear. The Markrams argue that social difficulties of those with autism spectrum disorders 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 behaviour – repetitive movements; echoing words or actions; failing to make eye contact – interferes with 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, is vice-president of the Asperger's Association of New England and has a child with the condition. He 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 autism spectrum disorder?

The problem starts with the complexity of empathy itself. One aspect is simply the ability to see the world from the perspective of another. Another is more emotional – the ability to imagine what the other is feeling and care about their pain as a result.

Autistic children tend to develop the first part of empathy – which is called "theory of mind" – later than other kids. This 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?

Most 4-year-olds know Sally didn't see Anne move the marble, so they get it right. By 10 or 11, children with developmental disabilities who have verbal IQs equivalent to 3-year-olds also get it right. But 80 per cent of autistic children age 10 to 11 guess that Sally will look in the box, because they know that's where the marble is and they don't realize other people don't share all of their knowledge.

Of course, if you don't realize others are seeing and feeling different things, you might well act less caring toward them.

It takes autistic children far longer than children without autism to realize other people have different experiences and perspectives – and the timing of this development varies greatly. But that doesn't mean, once people with autism spectrum disorder do become aware of other people's experience, that they don't care or want to connect.

Schwarz, of the New England Asperger's association, says 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.

When it comes to not understanding the inner state of minds too different from our own, most people also do a lousy job, Schwarz says. "But the non-autistic 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 website for people with autism spectrum disorder called WrongPlanet.net, after a mother wrote 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 says. "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 autism spectrum disorder, 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," Markram says. "It's quite sad, because these are quite capable people. But the world is just too intense, so they have to withdraw."

Maia Szalavitz writes about the intersection of 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 memoir of Brent Jeffs, a young man raised in Mormon fundamentalist polygamy. She is also senior fellow at the media watchdog organization stats.org.
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http://www.healthzone.ca/health/article/633688

Within the past 2 years or so, there have been articles about high functioning autism and the spectrum of this nature connecting the dots for people like myself and answering the 'why' in hindsight in regards to what has happened, and how to better cope/deal with these issues. 'It takes autistic children far longer than children without autism to realize other people have different experiences and perspectives – and the timing of this development varies greatly. But that doesn't mean, once people with autism spectrum disorder do become aware of other people's experience, that they don't care or want to connect.'

Having read this, and not lacking in the empathy department, or wanting too understand others the said concept that people on the autism spectrum lack is 'theory of mind' that is to say, we don't get that others sometimes do not care until much later sometimes into adulthood. This would explain why arguments in the home from childhood to present have always affected me greatly. A rock concert right up too the amp, and the reverberations in my skull are the raised voices of my family members. The same is true on the WWW. I've found it difficult to connect with people of all types, not because I don't explain myself but because I lack an understanding of 'theory of mind' aka. Some don't really care nor do they wish too.

The same could be said for my job experiences. In 2006 I lost 3 jobs in a row from June to October. I didn't engage in the banter with co-workers, nor was I very sociable unless directly asked. I was there too do my job, clock in and go home. By the time I was employed at Tropical Smoothy the last of the 3 jobs I would lose, I did befriend one female who was quiet herself. She was a sweet girl, and we shared some common ground. Upon the time October of 2006 rolled around, she was the one the Owner of the store had to inform me I was fired. Looking pained herself as she didn't want too inform me, she actually was on the verge of tears. I myself was not surprised about losing the job, where I was shocked was the Owner didn't have the balls too let me know himself. He cowered behind a poor girl that was my friend, too let me know. That fact upset me greatly, too the point of sobbing for hours. As stated in the article, I felt for her, almost too much.

On various on line communities that I have been a member of for years, some up too 7 years, I eventually was forced too no longer be a member, aka. Banned. As in my 3 lost jobs, I'm not a quitter, never have been one. Not until its forced upon someone else who understands 'theory of mind' as in most don't care about people such as myself, or I'm 'too much work' 'for the good of the forum' et al. I've moved on from many of these things, it just sucks that my empathetic meter goes ballistic when things like that in the real world or on line happen.

This would explain the intense digital art, poetry, prose, and music I've written. It reflects just a fraction of the tension experienced inside. This would be a healthier outlet then say slashing open my skin, though sometimes I do all of them. But, there isn't much someone such as myself can do outside of trying to help others understand, and letting things go when some don't care too understand. It would be nice if the ones who don't care said so to begin with. Would make things a lot less emotionally hectic on my end. Human nature I suppose. The more I explain things, sometimes the worse those things become. Most only care for themselves, not all but most. And other deceive themselves into thinking that they care. For the most part people with autism just are who they are. We do not fake, or have an underlining agenda. Who knows why this 'threatens' others. I'm still trying to figure that out. Squeezing these square pegs into the round holes.
 
I thought this was the prevailing theory about the nature of autism anyway - it was definitely common thinking back when I had my own kids.
 
Really interesting article.

I honestly think it's fairly common for people to have minimal empathy. I make that judgment based on the behavior of most people I come into contact with. Unless I'm delusional, I think it's pretty plain to see that most people (at least in my generation) are generally just concerned with themselves and never really developed much empathy at all.

I'm not autistic (as far as I know), but one thing I'm very empathic about is embarrassment. When another person is embarrassed, I feel it tremendously, and care for the way they feel. When a situation is awkward or embarrassing, even on the television, I cringe and feel the same exact thing as those subjected to it. However, there are a lot of things that I don't empathize with at all. Not because I don't care about people, but I sometimes feel like they're insincere.

People experience empathy in different ways, I guess. I never understood the theory that those affected with autism lack empathy. How can they enjoy music, or movies, in an emotional way, without empathy? How are there good musicians with autism/aspergers if they don't feel very much?

My father brought home my brother a pack of beer that he wanted from another state, and my father had gotten it from the fridge in the store. On the way home, the beer warmed up in the car. The changing of temperature has a bad effect on the beer. Anyway, when my brother came by to pick it up, he told my dad, "Well it's no good now. You can't do that." I felt tremendous sympathy for my dad, who didn't know what to say. I mean, he was I could cry just typing this, over something relatively small. Yet, a lot of big things that happen to people (death in the family, break-ups, etc.) don't cause me to feel that much empathy for them. Although I'd feel bad acting indifferent, so I offer my condolences and advice.

My point is, people experience empathy in different ways. It's unfair that autistic people are stigmatized the way they are. Empathy derives from your own experiences in your life, how you relate to others. For instance, if you ever cry to a song or dramatic scene in a movie/TV show, you're obviously experiencing empathy.
 
Hannah, thanks for posting this, really value people who write posts that Enlighten and Educate, especially about an area that is far too quickly misjudged and misunderstood. Think what you have done here has enabled others to Empathise! We all too often quickly judge others because we feel uncomfortable, and sense deep down we dont understand as much as we should, and often overcompensate for this by being so damned cocky and rude. Reading posts like this certainly helps to patch-up some of the void in my mind.
I really Admire your strength of character and honesty.:)<3
 
I think that a trend towards "recreational" empathy has emerged over the last few years and that it's created some bizzare expectations that we should care about everything that happens to everyone rather than caring more about those closest to us than we do about outsiders.

There's a similar expectation of instant intimacy emerging, and I think it taxes the emotional reserves of even perfectly "normal" people to be expected to expend large amounts of emotional energy on everyone they know regardless of their relationship with those people. I know that I find myself getting "compassion fatigue" quite often when people I know only casually expect large amounts of empathy and other emotional support from me. I can well imagine it overwhelming for people who have limited emotional resilience.
 
Lolie said:
I think that a trend towards "recreational" empathy has emerged over the last few years and that it's created some bizzare expectations that we should care about everything that happens to everyone rather than caring more about those closest to us than we do about outsiders.

There's a similar expectation of instant intimacy emerging, and I think it taxes the emotional reserves of even perfectly "normal" people to be expected to expend large amounts of emotional energy on everyone they know regardless of their relationship with those people. I know that I find myself getting "compassion fatigue" quite often when people I know only casually expect large amounts of empathy and other emotional support from me. I can well imagine it overwhelming for people who have limited emotional resilience.
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I hear ya on this lolie, before I was diagnosed as having autism at age 20, and even after for a long while, I pleased everyone while losing myself in the process, burning my emotional candle at both ends...I can relate painfully too that :\ there came a point when I had to choose between my emotional health and sanity vs. pleasing everyone...I made the choice I thought I 'couldn't make' but I did it...I still have a bent too want to please, but now I've made a habit of asking 'will they build me up as a person? or tear me down?' based on that answer, or the opinions of others I love and am close too, I make my choice to invest my time in them or not...Don't cast your pearls of emotional time before swine that won't appreciate it and trample your good nature under there hooves in the mud...You're worth more then that <3
 
Asclepius said:
Hannah, thanks for posting this, really value people who write posts that Enlighten and Educate, especially about an area that is far too quickly misjudged and misunderstood. Think what you have done here has enabled others to Empathise! We all too often quickly judge others because we feel uncomfortable, and sense deep down we dont understand as much as we should, and often overcompensate for this by being so damned cocky and rude. Reading posts like this certainly helps to patch-up some of the void in my mind.
I really Admire your strength of character and honesty.:)<3
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Thank you, that means a bunch <3
 
That article was very informative and thanks for sharing your personal experiences. It must have felt awful getting fired like that. What did that jackass think, you were going to hit him or something?
It's terrific that you can channel your frustration into art and music and poetry.
I agree that some people you've grown to trust can turn on you for no reason as they simply don't understand autism. Try not to let this get to you if you can help it.
 
Good read Hannah and makes a lot of sense really. I have a friend who has a child recently dx'd as an Aspie. I'm sending the article her way!
 
I'm 39 y/o "too old lol" in my opinion, I have asperger's and I too am treated like crap in public alot of times, even when I was in a locked psych ward for young and old adults just a week and a half ago. I've suffered all my life with this disability and what sucks most about it, is my poor social skills.

Anyone else out there, I feel sorry for you, them who have asperger's, at least I am prescribed a decent medication from my psychiatrist that doesn't make me feel dead tired all day and like a zombie. My psych doctor is cool and I've been seeing him for years now, because he understands me way better than the hospital "nut ward" employees do. I'm just glad to be home.
 
^ Nice to meet you, I'm 28 and I have AS too... I'm on 2mg risperidone a day because I've had some paranoid psychotic episodes in the last few years. My graduation from the university has been delayed by about 3 years because I've had to take long breaks from school because of my mental condition. Fortunately I've been mostly sane for a year now and I'm doing well at school. I currently have to live with my father because of my financial situation... How old were you when you were diagnosed with AS? I was 18.
 
my psychiatrist told me I have aspergers a year ago when I was 38 years old, however I have had as since I was young like 5 years old and nobody knew about as much back then. Now since they do, my psych doc is pretty nice to keep me on the right meds to keep me calm most of the time during the day.
 
Children who have Asperger syndrome can be academically excllent; many tend to have average and superior IQ scores. It may take a while for children with Aspergers to blend in with a certain group.
 
I agree with that theory 100% times that I have allowed myself to experience empathy, it was so suffocating that I broke down in tears I could not function, so most of the time I block it out. I have Asperger's and so does my daughter. The difficulty is that with my empathy contained, I have very little concept of how my actions will be perceived by others, it's largely guessing. I get the feeling that neurotypicals have some sort of instinct for expected behavior vs. I have a set of fairly rigid rules that I can apply. Lying in particular requires being able to sense what would be anticipated by an other-mind and I find that very difficult to do.
 
Hannah Capps said:
Aspergers Article
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"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 a response to being overwhelmed by emotion –an excess of empathy, not a lack of it?"

^--- something I've known to be a true thing, years before.
 
I worked as a special support assistant in schools and privately, with children that had special educational needs but in mainstream schools. One little boy had asperger's and this article definitely rings true, if other children hurt them selves, he would get upset because he saw them in pain. He was a very loving little boy and once we made a connection he was glued to my side, I was very sad to leave as I really enjoyed working with him, sometimes it could be difficult for me as I hated seeing him heartbroken, but he was a pleasure to support. One of the best pupils I ever worked with.
 
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