Article: A Radical New Autism Theory

[Guest guest]

http://www.thedailybeast.com/blogs-and-stories/2009-05-11/a-radical-new-autism-t\

heory/full/

by Maia Szalavitz

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 '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. "

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.