Toronto Star

Asperger's theory does about-face

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.

By Maia Szalavitz The Daily Beast

Thursday, May 14, 2009

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.

Source:

https://www.thestar.com/life/health-wellness/aspergers-theory-does-about-face/article_1e92818b-ed4a-5f90-8690-db2c232e1bd2.html