At the age of six, Jack Craven started telling his mother he wanted to die. “God made a mistake when he made me,” he would say. “Why can’t I just die?” His mother, Lori Craven, says she didn’t even know that kids his age could think such things: “Can you imagine your child saying that?”
Jack, now 12, has sensory processing disorder (SPD). It’s a contentious diagnosis. Some doctors will argue that it doesn’t really exist, while those who recognize it estimate that sensory issues affect between 5 and 16 percent of us.
For some people, this means they are oversensitive to lights or sounds, but there are others for whom a caress feels like sandpaper tearing their skin, and there are babies who will scream and won’t sleep unless they are held tightly and bolt upright. It can make what many of us take for granted as ‘normal’ life practically impossible.
As a toddler, Jack had found it unbearable to be anywhere loud: “There was a lot of screaming if it was noisy,” Lori recalls. “Actually, there was just a lot of screaming from him.” At school, “he was like a deer in headlights.” Jack is a bright boy, but the environment was so overwhelming he couldn’t perform well. He would come home and tell Lori that the other kids were saying he was “stupid,” “a dummy.” Now she schools him at home herself and every day, in everything they do, they have to consider Jack’s sensitivities, she says.
Despite the difficulties, however, some adults and some parents of kids with SPD report an upside. As well as being more reactive to physical sensations, they’re also more sensitive to other people’s emotions. To researchers, this is intriguing. Could sensory processing help explain the personalities of people we might otherwise just think of as ‘sensitive’? Might people with SPD even be at the extreme end of a spectrum of sensitivity that developed as an evolutionary advantage?
“How am I feeling in this room right now? Horrible. This is a terrible room. I’m trying not to focus on the lights and let them bother me. I’m trying not to listen to that echo—because I’m hearing my voice in my throat, and in the air and bouncing off the walls. And we are sitting with this gap behind us, so I’m floating in the middle of the room and a piece of me is going, ‘I hope this doesn’t screw me up for when I have to be on stage’ … I guess the door is locked? No one’s coming in, right?”
It’s a little after midday on a bright cold Tuesday in Chicago, and Rachel S. Schneider is describing what it’s like for her to be in what to most people would seem a bland ante-room to the hall in which she will shortly be speaking. If being in here is so discomfiting, the flight from New York, where she lives, must have been torture? She nods.
Schneider was 27 when she was diagnosed with SPD, in 2010. For her, it means she’s particularly oversensitive to sights and sounds. No one likes a spotlight in the face or the sound of nails on a blackboard, but to Schneider a glow can feel like a spotlight. For her, an echo is as intrusive and attention-seizing as scraping nails. She also struggles with a lesser-known sense called proprioception—the sense of where your body parts are in space. For this reason, she thinks, she enjoys pressure on her body (“I’m a hugger!”).
She’s been hyper since she burst into the room, fueled by excitement (relating to the symposium she’ll shortly be addressing) and anxiety (relating to her talk, the travel, this interview, this room). When we get on to talking about recent neurological research into SPD, she practically bangs her fist on the table. “It was pivotal!” she says. “Pivotal! When I first heard about it, I was so excited, I wanted to throw a parade!” She pauses for a moment. “And I don’t like parades.”
The parade would have been for Professor Elysa Marco at the University of California, San Francisco. Marco is a pediatric neurologist and is now regarded as a leading expert on SPD. Back up six years, though, and she hadn’t even heard of it. She was, however, starting to think more about the role of sensory problems in the symptoms of many of her young patients.
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