A couple days ago I stumbled across this article about Sensory Processing Disorder (SPD). As many of you know, SPD is almost always concurrent with a diagnosis of autism. I’ve tried many times to get Charlie to explain to me how his “ghastly,” “horrible” body feels, but every time I’m met with “you won’t understand” or “only people with autism will understand.” After that, he shuts down and won’t talk about it further. When I saw that article and read the girl’s description of what it felt like to have SPD, it hit me hard.
Rachel Schneider was 13 years old when it happened the first time. She and a few other children had been singing prayers at her Hebrew school when suddenly Schneider felt that something inside her head had gone wrong and that she wasn’t there. Her father brought the terrified girl to an emergency room, where doctors dismissed the episode as a panic attack. They said that Schneider was fine.
It happened again while Schneider was on vacation in Quebec City with her parents and sister. Inside a souvenir shop, she was startled by a man who came up behind her holding a small marionette and speaking rapidly in French. Schneider screamed and ran out of the store. Her mother tried to comfort her, but Schneider could not be consoled.
“Suddenly it was like the entire room was pouring into my brain, and the lights, and the sound,” Schneider said recently. Speaking of that first incident, she said she felt as if a chasm had opened up inside her head, and she was seeing but not seeing, and hearing but not hearing.
I decided to share the article with Charlie and get his thoughts. We had a long chat about it, and I asked him a lot of questions. At first, he did his usual “only someone with autism will understand” bit and tried to shut down the conversation before it really started. I told him that maybe he could take a stab at explaining as this young lady had. I found what he shared incredibly enlightening and also completely heartbreaking.
Charlie: I’m very pleased to hear this. Talking about it is good. Like her, I feel like my head has been invaded. Each sound sounds like it is crashing in my head. Only people with autism can understand. Pain permeates my body and I lose control. Power of my body to take control is lost.
Me: Is this a constant thing or does something trigger it? Can you feel it coming or does it take you by surprise?
Charlie: It is constant at times like at stores.
Me: Is it only sounds or does anything else bother you?
Charlie: Light and motion also. For me driving in a car helps. Takes me by surprise mostly.
Me: What emotion do you feel when this happens?
Charlie: Scared. Like im falling in a big hole. Especially when fighting against my own body.
Me: What about where she talks about not being able to feel her own body? Does this happen to you?
Charlie: Yes. This is constant. I have to move to know every body part .
Me: If you’re not moving, what does your body feel like?
Charlie: Nothing. There is no feeling.