The worst (wrong) public understandings of Aspergers is a lack of care or feeling. I know that to be wrong on a personal level – in my teens and young adult years I had plenty of crying-to-sleep nights that were based on cares and feelings.
A new theory suggests that the opposite is true – we actually feel too much. It is known as Intense World Syndrome, with the idea being that Aspies and Autistic folk shut down due to an overload of the sense. I’m so mildly Aspie that I definitely have never rocked, but I do understand why someone would act that way in response to too much going on.
There’s an awesome article (The Boy Whose Brain Could Unlock Autism) at Matter.com about this theory, snippets here:
Kai was also socially odd: Sometimes he was withdrawn, but at other times he would dash up to strangers and hug them.
…Without warning, Kai, who was five at the time, darted out and tapped the deadly cobra on its head.
…IMAGINE BEING BORN into a world of bewildering, inescapable sensory overload, like a visitor from a much darker, calmer, quieter planet. Your mother’s eyes: a strobe light. Your father’s voice: a growling jackhammer. That cute little onesie everyone thinks is so soft? Sandpaper with diamond grit. And what about all that cooing and affection? A barrage of chaotic, indecipherable input, a cacophony of raw, unfilterable data.
Just to survive, you’d need to be excellent at detecting any pattern you could find in the frightful and oppressive noise. To stay sane, you’d have to control as much as possible, developing a rigid focus on detail, routine and repetition. Systems in which specific inputs produce predictable outputs would be far more attractive than human beings, with their mystifying and inconsistent demands and their haphazard behavior.
…Preventing Kai from harming himself by running into the street or following other capricious impulses was a constant challenge. Even just trying to go to the movies became an ordeal: Kai would refuse to enter the cinema or hold his hands tightly over his ears.
However, Kai also loved to hug people, even strangers, which is one reason it took years to get a diagnosis. That warmth made many experts rule out autism. Only after multiple evaluations was Kai finally diagnosed with Asperger syndrome, a type of autism that includes social difficulties and repetitive behaviors, but not lack of speech or profound intellectual disability.
…But more significant is that when pregnant women take high doses of VPA [an epilepsy drug called valproic acid (VPA; brand name, Depakote)], which is sometimes necessary for seizure control, studies have found that the risk of autism in their children increases sevenfold. One 2005 study found that close to 9 percent of these children have autism.
…While ordinary rats get scared of an electrified grid where they are shocked when a particular tone sounds, VPA rats come to fear not just that tone, but the whole grid and everything connected with it—like colors, smells, and other clearly distinguishable beeps.
…Hyper-responsive sensory, memory and emotional systems might explain both autistic talents and autistic handicaps, they realized. After all, the problem with VPA rats isn’t that they can’t learn—it’s that they learn too quickly, with too much fear, and irreversibly.
…They thought back to Kai’s experiences: how he used to cover his ears and resist going to the movies, hating the loud sounds; his limited diet and apparent terror of trying new foods.
[I was terrified of trying new foods as a child, and my parents could not get that I wasn’t just being a normal kid in this regard.]
…This has profound implications for autism. If autistic babies tune out when overwhelmed, their social and language difficulties may arise not from damaged brain regions, but because critical data is drowned out by noise or missed due to attempts to escape at a time when the brain actually needs this input.
…The VPA model also captures other paradoxical autistic traits. For example, while oversensitivities are most common, autistic people are also frequently under-reactive to pain.
[I have always considered myself to be able to handle pain in an above-average way, although my fear of pain is high. It’s a hard thing to judge and compare…]
The same is true of VPA rats. In addition, one of the most consistent findings in autism is abnormal brain growth, particularly in the cortex. There, studies find an excess of circuits called mini-columns, which can be seen as the brain’s microprocessors. VPA rats also exhibit this excess.
Moreover, extra minicolumns have been found in autopsies of scientists who were not known to be autistic, suggesting that this brain organization can appear without social problems and alongside exceptional intelligence.
Like a high-performance engine, the autistic brain may only work properly under specific conditions. But under those conditions, such machines can vastly outperform others—like a Ferrari compared to a Ford.
…. In May, for example, the German software firm SAP announced plans to hire 650 autistic people because of their exceptional abilities. Mathematics, musical virtuosity, and scientific achievement all require understanding and playing with systems, patterns, and structure. Both autistic people and their family members are over-represented in these fields, which suggests genetic influences.
…When someone else’s pain becomes too unbearable to witness, even typical people withdraw and try to soothe themselves first rather than helping—exactly like autistic people. It’s just that autistic people become distressed more easily, and so their reactions appear atypical.
“The overwhelmingness of understanding how people feel can lead to either what is perceived as inappropriate emotional response, or to what is perceived as shutting down, which people see as lack of empathy,” says Emily Willingham. Willingham is a biologist and the mother of an autistic child; she also suspects that she herself has Asperger syndrome. But rather than being unemotional, she says, autistic people are “taking it all in like a tsunami of emotion that they feel on behalf of others. Going internal is protective.”
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I do have a minor problem with the Intense World Syndrome theory. While my mildness might be a factor, I reckon if I found a situation to be so intense and overwhelming that I shut down – that I would be able to describe this to others, to researchers.
Yes it is hard if your baseline is overwhelmed. But surely many Aspergers have worked it out for themselves – everybody else in the cinema is handling the deafening sound fine, so it is me that has the problem.
For me personally, I get claustrophobic – too much going on in one place. When I enter a large social situation (rock concert, wedding, lecture) I will usually be against a wall and close to an exit – in case I need to escape. But these apply mostly to new situations. Repeated situations don’t have me on guard nearly as much.