Thursday, July 15, 2010

The Eyes of Autism

Brenda Rothman
mamabegood.blogspot.com

It was a coolish summer day, no humidity, a perfect day on the porch. We have an old-fashioned front porch, meant for eating, for socializing, for calling out over the railings to neighbors and friends. A large, narrow-planked porch with columns, rockers, sofas, ceiling fans, and lemonade. We dragged the sand box, literally a box filled with sand, to the middle of the porch. I lugged buckets of water from the kitchen and kaplooshed the water into the water table. I fetched a spoon and a tin of baking powder and Jack was set.

Jack: Then a little salt and a little more sand and stir, stir, stir.

I could watch him do this all day. When he was three and the other three-year-olds at preschool were doing this, Jack wasn't. He wasn't talking, he wasn't interacting, he wasn't playing. And he was worried. More worried than any three-year-old should be. So, yeah, I could watch him do this all day long.

After Jack had cooked and watered and sploshed mud puddles, he was ready to wash up and relax. We retreated to a darkened living room to watch Baby Jack videos. I've watched very few of Jack's baby videos, just for sheer lack of time. He doesn't enjoy the infant videos so much -- not enough action -- but he does like the toddler videos. Reluctantly, he agreed to watch a few minutes of infant one. Daddy and I begin to notice a theme to this video. Scene after scene of Daddy filming baby Jack lying on his back in his crib with the mobile on. We laugh about it. The only way you can tell it's a different day is by Jack's change of onesie. Daddy is a very, very proud father.

And we also notice another theme. Jack looks at the mobile with his head turned to the right. He's looking at it with his left eye.

Before Jack was born, while I was having wispy, cloud-filled dreams of chubby babies, we visited friends at their house. They had two adorable blond boys toddling around. The youngest wore glasses and I remarked to the mom that I always thought that having to put glasses on little kids was the saddest thing. She looked at me, puzzled. "Why?" she asked.

Why?

Call it arrogance. The arrogance of ignorance. That moment still shames me. At the time, I thought the worst thing was having to put glasses on an adorable baby face. This is coming from me; me, who has had glasses since third grade and needed them from well before that. That was just my thing, my hole, my wound. It wasn't a real problem, a child needing glasses. It was my view because I hadn't lived through any real health problems with kids.

Then came Jack. Jack spent six weeks in the NICU when he was born. He had pulmonary hypertension, among other issues, which meant he couldn't breathe on his own. He was on oxygen and that can lead to eye problems. So Jack's had to have eye examinations since birth. At one year old, he got his first glasses. Did I flinch? No way. He needs to see. He needs glasses? Then he needs glasses. Nothing like a slap upside the head from God to get you over the little things.

But ... you want to know how hard it is to get a one-year-old to wear glasses? Oh, let me tell you. We're not talking any one-year-old here. We're talking a one-year-old who hates things to be on his face or his head. Who, though he could barely manage to work his arms, pulled the oxygen tubes off his face every chance he got. And those tubes were secured on his face with bandaids. That would become unsecured and unsticky on one side, requiring me to pull them off his face and reapply new ones. Oh, dear mama.

After several attempts at putting brand new glasses on our brand new one-year-old, who screamed and pulled them off each time, I went back to the pediatric ophthalmologist.

Me: Are there any headstraps or any suggestions for keeping glasses on a baby?

Oh, you gotta hear this.

Doctor: You'll have to put splints on his arms so that he can't use his arms at all.

Oh, yeah. He said that. Even for a typical kid, I can't believe he would suggest splints. But Jack had been diagnosed with cerebral palsy when he was eight months old. We'd been working like crazy in physical and occupational therapy for him to learn to USE his body, not STOP using it!

Our occupational therapist at the time, a graceful, zen presence, thank God, said, "Splints on his arms? What kind of message is that sending your child? Why not find a gentle introduction?" Exactly.

Do I seem a tad peeved? Even after five years? Oh, yeah.

So, I found my own way. Every day, twice a day, starting out at two minutes, Jack and I went out to the porch. We'd sit on the sofa to watch cars. Even then, he liked watching the cars speed by. Holding him on my lap, I'd whip his glasses on and put my arms around him to keep him immobile. Then, with my utmost enthusiasm, I'd say, Oooh, there's a red car! Oh, look, there's a black car! Here come's a tan car!

It worked. Two minutes under our belts the first time, five minutes the next. Next thing you know, we were up to twenty minutes and from there it was a piece of cake. After about two weeks of watching cars, he'd gotten used to his glasses.

Splints. Huh.

And then we found out that corrected vision is not everything.

So, we're watching the baby Jack video and all the signs of vision processing problems are there, though subtle. He turns his head slightly to look out of one eye. He's fascinated by the bold lines of the picture railing against a light wall, the corner where the white ceiling met the dark wall, the tops of doorways.

As he got older, we realized that he couldn't recognize faces. He looked at the negative space in a picture, instead of the filled spaces, to identify an image. He couldn't identify animals that were cartoons or drawing.

He spent most of his time looking down.

Used to be because he wasn't looking, I thought he wasn't paying attention. Once, I set up the fingerpaints and swept his hand around in it. He kept looking away. I'd say, "Jack, look, look!" repeatedly, thinking he's not listening. Meaning really, he's not looking, therefore, he's not paying attention. It was a very subtle train of thought. But there it was.

It took me a long time to realize that he was paying attention. He was noticing. He was looking in his own way, not straight on, not continuously. He was taking peeks and managing his visual load. Because Jack can only process one thing at a time. He's either going to feel what's on his hands, which is a lot to deal with if you don't like weird sensations, or he's going to look at the swirling colors. He can't do both.

The same with when I was explaining to something to him. I'm explaining what we're about to do and he's not looking at me. Look out, here comes that train again. If he's not looking, then he's not listening; therefore, he's not paying attention.

The thing was: he was paying very careful attention to hearing me. If he had been looking at me, he couldn't have heard me. He can't do both.

Let me tell you about Michael Burry. Michael has a lot of accomplishments behind him. Though he lost an eye to a cancerous tumor before the age of two, he graduated from medical school. At 32 years old, he opened his own investment firm and made himself and his clients billions of dollars by correctly predicting and playing the subprime mortgage bond market. He was diagnosed with Asperger's as an adult - only after his son was also diagnosed.

In a Vanity Fair article, Michael Lewis writes this about Michael Burry:

Grown-ups were forever insisting that he should look other people in the eye, especially when he was talking to them. “It took all my energy to look someone in the eye,” he said. “If I am looking at you, that’s the one time I know I won’t be listening to you.”

And you already know about John Elder Robison. John was diagnosed with Asperger's when he was 40. As a child, he was sure something was wrong with him. He wondered if he would turn out psychotic, dangerous, a killer. Why? Because people were always telling him to look them in the eye ... and he couldn't.

It turns out that even typical children and adults look away. Yes, they look way less often than kids with autism, but they look away for the same reasons. To turn off visual processing while concentrating on difficult cognitive tasks. To manage anxiety when facing emotional demands. And the hardest place to look? The human face. Turns out that the most visually demanding thing to look at is the human face. It's ever-changing. It's emotionally charged. It's a sensory amusement park. So, while presented with a fairly difficult cognitive task or social difficulty, people tend to avert their gaze.

It's no wonder kids with autism look away. They're dealing with an extra load of visual processing, sensory input, and anxiety. They are working hard to manage the world, the daily tasks, the things we take for granted every single minute of the day. Imagine yourself working at your most difficult task. What would it be? Climbing a mountain? Doing algebra? Playing piano? Now imagine someone asking you to look at them while you're doing it.

Now you know why it pains me to hear someone say "Look at me. Look in my eyes" to a child with autism.

----

Sources:
  • Michael Burry: Read more of the excerpt from The Big Short: Inside the Doomsday Machine at http://www.vanityfair.com/business/features/2010/04/wall-street-excerpt-201004?printable=true#ixzz0sppCsrhu
  • John Elder Robinson: Look Me in the Eye: My Life with Asperger's, Three Rivers Press: NY, 2007.
  • Gaze Aversion: 
    • Doherty-Sneddon, G., and Phelps, FG (2005) Gaze aversion: A response to cognitive or social difficulty? Memory and Cognition, 33, 727–733; 
    • Doherty-Sneddon, G., Bruce, V. Bonner, L., Longbotham, S. and Doyle, C. (2002) Development of Gaze Aversion as Disengagement from Visual Information. Developmental Psychology, 38, 438-445.
A version of this essay was originally published on mamabegood.blogspot.com.