Intense World Syndrome
Neuroscientists Henry and Kamila Markham have come up with a new theory of autism by observing Henry’s own Aspie son. Excerpts:
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.
This, Markram and his wife, Kamila, argue, is what it’s like to be autistic.
The behavior that results is not due to cognitive deficits—the prevailing view in autism research circles today—but the opposite, they say. Rather than being oblivious, autistic people take in too much and learn too fast. While they may appear bereft of emotion, the Markrams insist they are actually overwhelmed not only by their own emotions, but by the emotions of others.
“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.”
The theory is not without controversy, but I think it resonates with many parents of kids on the spectrum because of its focus on how these kids react to stimulation. Our Aspie son eats four or five foods, and always has. The prospect of trying new foods makes him scared — and he’s a sophisticated kid who has the opportunity to try lots of different foods. He’s told me that he wishes he could eat more widely, but he just can’t bring himself to do so. He’s gotten much better about sensory issues as he’s gotten older, but I cringe to think about how insensitive I was to what was really going on with him before we got his diagnosis. I remember one night my son, who was five or six, screaming that the shower was too hot. I put my hand into it, and the water was lukewarm. I thought he was being ridiculous, and made him get in. In those days, he couldn’t sleep unless he had Gregorian chants or a short, gentle Bach piece played by Segovia playing, over and over, all night long. He needed this to drown out the ambient noise in his room, which kept him from sleeping. We lived on a quiet street, but the crackles and pops of our old house settling, and nocturnal animals padding around outside, were torture to him.
Thank God much of that is in the past for our boy. But it was a hard, hard time for him. Every parent of a kid on the spectrum knows how extreme sensory issues are for these kids. A while back, I posted the video above on this blog. It was created to show neurotypical people what Aspies and others on the spectrum experience in their sensory meltdowns. I showed it to my son, who said yes, exactly, that’s what it’s like.
I must sound like a broken record on this topic, but it’s so, so important. Even though we’ve had Matt’s diagnosis for eight years now, there are new things to learn all the time. I apologized to him last night, and again this morning, for something insensitive I said to him before bed. It was idiotic, but I didn’t think before speaking.
[H/T: The Browser.]
UPDATE: I just spoke to my son Matt about this Markham theory, and he said that it makes perfect sense to him. He said when a character dies in a movie, he’s usually unaffected by it emotionally, but when a character loses a beloved object, it upsets him. Says Matt, “I think that this is just the right amount of sadness for my brain to handle at one time.” He says he believes that his brain simply shuts out emotion that is too overwhelming. Interesting.