Extremes and Empathy

Charlie tends either to be hyper-sensitive or hypo-sensitive to touch, I wrote yesterday: He requests deep pressure and applies to himself (by wrapping himself tight as a mummy in a fleece blanket when he sleeps); he can either be jarred, though, by a light tap of the finger, or not seem to notice it. Further, he also seems to favor strongly flavored food (as revealed by a recent liking for horseradish). So a "a radical new autism theory" written about by Maia Szalavitz in The Daily Beast made quite a bit of sense to me.

When it comes to feeling, Charlie tends to extremes, whether it's the deep, massage-like pressure or in terms of how he feels, senses, and experiences emotions. The "intense world" theory, which has been put forth by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that " fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an overwhelming fear response." Further:

“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.”

Feeling too intensely, rather than less than the "typical" person and not at all---this would be quite the opposite view to some commonly (though not correctly) held dicta about autistic individuals as feeling too little; as being emotionally "withdrawn," "lacking empathy," and unable to detect the emotions of others.

Charlie, Jim and I and anyone who knows him well often say, is a very emotional kid.

He's particularly attuned to the non-verbal expression of emotions, from body language, posture and gesture to tone, pitch, and rhythm of a person's voice, and much more. I'd say this is in part because his verbal language is, as noted, limited, and we suspect he's learned to understand a whole range of non-verbal communication cues that we're not even aware of. Far from being "locked in his own world," Charlie definitely senses when we're sad, angry, frustrated, aggravated (at him---yes, it does happen.....; from various work-related matters).

What's very difficult for Charlie is what to do with all that he senses and feels. Yyesterday in the car just as we were approaching the neurologist's office, Charlie started moaning and keening in loud tones. His voice got louder and louder and, after we'd parked the car and gotten out, Charlie burst out of the car and got very, very anxious in what you could call extreme panic. Of course he was himself anxious about seeing the doctor (this was only the second time that he has seen this neurologist, and Charlie first had to have a 40-minute EEG, as we'd been explaining to him). And of course, Jim and I were anxious (about the EEG, for one thing) and despite our attempts at talking about random other things, I'm sure Charlie could tell, our worry/stress level was rising as we drove closer and closer to the neurologist's office. He knew full well what the feeling in the car was, you can be sure.

As Szalavitz also notes:

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.”

Yes, perhaps it's that the world is too intense and too intensely experience for Charlie. On the one hand, he seeks out that intenseness (the horshradish sauce.......). On the other hand, it can overwhelm him beyond distraction.

But I often think Charlie's not only very much attentive to others' feelings, but also more in control of all of his own emotions than might be thought. A couple of years ago we were making regular visits to my mother-in-law who was in a psychiatric hospital for severe depression. Charlie of course accompanied us, but was (due to his age) not allowed into even the waiting room. He was as grave and sober as we all were and, when he and I went down the road to a convenience store, he chose a "green drink" without much ado, then paced the grass by the parking lot while Jim sat with his mother. He kept hovering by the low-slung window that I'd identified as "Grandma's room." As we drove away, Charlie was as quiet as Jim and I, talking in low voices.

Charlie's a sensitive kid, with his radar up for how others feel.

Charlie's a kid with (as we noted to the EEG technician) a diagnosis of autism.

And I don't think it'd be inaccurate to call him, a boy who feels very, very much.