But because of Carly’s inconsistent willingness to write and inability to control her outbursts, it was often hard to measure where on that ladder she was standing. Her therapists would read magazines, textbooks, and newspapers to her. Or they might watch TV and listen to the radio, even for a few minutes at a time. Carly would rock, often hands over her ears—particularly right hand to right ear—making humming or mooing noises. The staff persevered, never sure what Carly was retaining or what she was thinking. When Mel got her chatting, however, we learned she had near-perfect recall of facts. In fact, her knowledge appeared to far exceed the materials they covered in their lessons.
“Mel you are boring,” Carly complained.
“Why?”
“Cause you make me work.”
“Okay, well, working is a good thing, right?”
“No”
“Why do you say that?”
“Are people content working?”
“I think some people like their jobs and some people don’t. That’s why it’s important to figure out what you like to do.”
“ok, but do you like your job?”
“I love my job. I really liked taking psychology in university, but sometimes, to get to where I wanted to be, I had to do things I didn’t like, like math. I hate math. Is there anything you like about working?”
“I make a recipe.”
“Anything else?”
“I like talking on MSN”
“What else?”
“I like reasoning”
“What don’t you like?”
“I hate Thinking Basics,” she said, referring to a textbook Autism Resources had her working on.
“Why?”
“it’s too easy.”
“I agree. I have harder Thinking Basics books at home. Should I bring them to try?”
“No”
“What about the sexuality program, do you like it or hate it?”
“Mel, I know about sex.”
“I know you know about sex. I don’t think you get it, though.”
“I do”
“Then if you get it, let’s do a pop quiz. Name three types of birth control.”
“Pill. Condom. Diaphragm.”
“How does the birth control pill work?”
“it tricks your body into thinking it’s pregnant.”
“Okay. Let’s talk about a recipe to make next week,” Mel said, sensing Carly’s teenage discomfort. “You tell me the ingredients and method, and I’ll bring the ingredients with me next Thursday and we’ll cook in the kitchen.”
“I want to make spaghetti”
“Carly’s famous pasta.”
“tomato sauce. Noodles of any kind. Mushrooms. Nice peppers. Garlic 1 large clove. Parmesan.”
“Awesome. I’ll bring the ingredients and we’ll make it next Thursday for lunch. What should we do now, academics?”
“Academics.”
“Okay,” said Mel taking out the science textbooks they had been reviewing. Although not following a specific lesson plan, every day they studied from junior high–level material. “What is cell theory?” Mel asked.
“The cell theory states that the cell is the smallest unit of living material,” Carly responded.
“What is serotonin?” Mel read from the text.
“It’s a neurotransmitter.”
“And what is dopamine linked to?” Mel asked her.
“Alzheimer’s.”
After receiving the latest installment of their weekly discussion, I called Mel. “Is this for real?” I asked. I seemed to ask that frequently where Carly was concerned. “She sounds more grown-up than Matthew!” I had an ear-to-ear grin.
“Yeah, she gets it,” Mel said. “Problem is she won’t do the work consistently, so it’s hard to see where she’s at.”
Carly was showing us a stubborn side, refusing to do work she felt was too easy or beneath her and making it virtually impossible to determine a baseline on which to create a lesson plan. Lacking a clear trajectory, Mel and the team did their best to cobble together an eclectic range of topics to keep Carly attentive. This left me with the extreme ends of emotion: excited about her intelligence and frustrated by her inconsistencies.
“If you were going to university or college, what would you want to major in?” Mel wanted to know.
“Psychology,” Carly answered. I mused at how she had grown from wanting a job in a bagel store several years before to the more challenging and sophisticated goal.
“Okay. What kind of stuff would you want to learn about in psychology? Do you even know what psychology is?” asked Mel.
“the study of human behavior,” Carly seemed to say with an eye roll.
“How do you know all this stuff?” Mel asked, genuinely perplexed.
“Look Mel, I’m an academic genius,” Carly responded.
We all laughed at the attitude that was emerging in Carly’s voice. From within the chaos came a trickle of strength and self-confidence that had to be nurtured somehow. What might be chided as arrogance in an adult we welcomed gladly from our child.
“Ha ha,” replied Mel. “I know—but seriously, you weren’t born with all that info in your head. You had to learn it somewhere. How did you learn?”
“I read.”
The truth was that Carly never read on her own. She lacked the fine motor skills to hold a book and turn the pages. Furthermore, she was more likely to stim or rip a book apart if left with it unsupervised, so it was unclear to me how she was obtaining this knowledge.
“How long does it take you to read a book?”
“A moment,” Carly answered. Years later we would learn this was no overstatement. Carly had an uncanny ability to glance at a page and respond to questions of comprehension with 90 percent accuracy at times.
“How do you remember all the facts in the book?”
“I just do.”
“Can I ask you, do you read a lot about autism?”
“Yes.”
“You must have read about applied behavior analysis?”
“Mel i know ABA”
“Okay. You know that with your knowledge, you could become a psychologist working on autism research? How come you never told your parents or Howard or Barb any of this stuff you know? Do they know you know all this stuff?”
“They love me.”
Carly often speaks in non sequiturs. Perhaps it is nothing more than the speed bumps caused by the slow pace of her typing; her mind already racing well ahead of her fingers. Or perhaps the logic in her mind, clear as an Arizona sky, looks befuddled to us. Yet another mystery I hoped to solve one day.
“Of course they love you, but do they know all this stuff?” Mel asked, confused.
“No.”
“Why not?”
“They don’t ask.”
“I think Mom, Dad, Howard, and Barb would love to talk to you about this stuff. Maybe we can all work together to get a professor to teach you new things. Or how about having a philosophical conversation with Dad about something in history or something about psychology?”
“That would be awesome.”
“Would you ever want to start a book club with your family and friends? You read a book and discuss the book over dinner and drinks?”
I smiled reading this, picturing Carly holding court, a martini in one hand.
“Yes,” she replied.
As Carly continued to mature, a fog seemed to be lifting. We took every opportunity to ask her about what was happening inside of her; what motivated the outbursts and perpetual motion. It had been something she was either unwilling or unable to articulate, though we continually probed. Just maybe if she gave us a little more insight, we would find something we had missed in all the years of exploration.
In one of their conversations, when Barb inquired why children with autism don’t look people in the eye and whether they should be encouraged to, Carly replied, “No. We see different than everyone else. We take pictures in our heads like a camera.
It’s like filling a camera with too many pictures. It gets overwhelming.”
At the end of each of their sessions—even before leaving our house—Barb took out her own laptop and summarized the conversations and progress they had made. I read her emails off my BlackBerry while stopped at red lights on the drive home. Today that’s a ticketable offense, but one that’s worth the fine. These notes were like an addictive mystery that I couldn’t put down—even at the risk of a car accident.
One particularly intriguing session, we learned how it was that Carly processed information. Barb had been telling Carly about a problem she was having with one of her other young clients. She said the boy was a bright five-year-old with autism. He frequently made noises and repeated phrases or words over and over—words he had picked up from watching cartoons.
“I find it very difficult to work with him when he stims. Carly, do you have any ideas how to stop this?”
“That’s not stimming,” Carly corrected Barb. “People mix that up with stims but it’s not. Stims are when we focus on sensory output to block out sensory input.”
Typically, stims referred to the repetitive behavior people with autism exhibit—flapping hands, wriggling fingers, or fiddling with an object.
“Isn’t that what he is doing—focusing on his own talking ‘output’ to block out my ‘input,’ if I am asking him to do something he finds hard?” Barb pursued. She was stunned by Carly’s clarity and sophisticated insight, and intrigued to learn—the master from the pupil.
“Knowing myself—and again remember I don’t talk, you can’t just talk as a stim. It has to be more engaging.”
“I don’t understand. Can you explain?” asked Barb.
Howard interjected, “When you were making noises just now, was that a stim?” Carly had been making a humming sound while chewing her potato chips.
“I was making noise and changing the sound with my finger in my ear to block out audio input from the crunching of the chip.”
“So back to my client, what is he doing if it’s not stimming, and what can I do to help him?”
“He is audio filtering.”
Barb and Howard looked at Carly dumbstruck.
“What is he filtering, and what should I do about it?” Barb was genuinely intrigued, as if consulting with a famed doctor.
“We take in over a hundred sounds a minute. We have a hard time processing all the sounds at once so it comes out later as a broken record.”
“That’s so interesting!” exclaimed Barb. “Is he listening while doing this?”
Carly nodded yes.
“How do I get him to stop?”
“Something is setting it off. Smells. Hairstyle. clothes or sounds can be a trigger,” responded Carly.
“But what can I do?” continued Barb.
“How can you help someone when you are to stubborn to listen?” teased Carly.
“That’s not fair. I am here to listen. If I don’t understand something, it’s not fair to say that.” She couldn’t see Carly’s face as she was looking toward Howard, but he said she said this all with one of her mischievous smiles.
“It could [be] something you are saying or making him do that acts as trigger. It’s the method that reverberates the sentence or words in his head and to filter the meaning he repeats it over and over,” Carly replied somewhat cryptically. It seemed that Carly’s thoughts raced ahead of her ability to type, and some of the words in the sentence were missing. Her paragraph was like Swiss cheese—we grasped the gist of her meaning, but the holes left us wanting a bit more.
“If I can make out what he is saying, would it help if I explain what it means? Would it stop then?” Barb asked.
“He has to do it himself so he could learn how to filter,” Carly responded, and then signed she was done speaking.
We were astonished by how articulate Carly was—using simple metaphors to help us neurotypicals understand her condition. “It’s just brilliant,” Barb remarked, with a sense of relief. The observation of how Carly was absorbing information—taking in thousands of sounds and images at once—explained how she was gathering so much information. Newspapers are always spread over our kitchen table; the television or radio often left on. While it may not look as if she were perusing the way most of us do, Carly was reading much the same way a photocopier snaps a picture of the text and then stores it for future processing. Sounds would pour into her head and be sorted and filed for meaning at some later date. Some months later she pointed out that information could sit in an unprocessed state for hours, days, or weeks before she finally understood it and could respond—like an enormous pile of papers sitting on a desk, waiting to be filed.
Carly’s imagination and wit would become other cornerstones of her persona. Humor, we are told, requires intelligence, so we were both surprised and encouraged when she began peppering her conversations with little jokes, jabs, and sarcasm. To celebrate Matthew’s eighteenth birthday, Carly wrote him the following note:
Dear Matthew,
I want to wish you a happy birthday. Every one tells me that you love me and care about me. So because I love you and don’t want to see you without any friends or a girlfriend, I have to tell you something. You smell.
But that’s ok because I, your caring sister, have gotten you a present that will fix that. Now maybe you wont need to have any imaginary friends.
Naaaaaa. It’s you I’m talking about.
But you will smell better.
Your loving, caring and popular sister,
Carly
Carly had Howard take her to the store where she picked out bottles of a popular brand of body spray, cologne, and hair products. Matthew took it all in stride.
In addition to her sense of humor, Carly had a well-developed imagination. Late in 2007, completely of her own volition, Carly had started writing a piece of fiction called The Elephant Princess. One afternoon with Howard, she told him, “I want to work on a special project.” Without any further explanation, she launched into a Disney-like tale about a girl, a gecko, and a cast of anthropomorphic characters that resembled people in her life.
The inspiration for her creative explosion came from our nightly ritual of reading fantasy fiction, such as Angie Sage’s Flyte and Magyk. Cuddling up in Carly’s big bed with a book was our favorite time of the day. I had asked her why she preferred these books over others in the genre, such as the Harry Potter series.
“I like them because they’re about a girl who’s a princess. She’s like me,” Carly answered.
“Oh, you’re a princess?” I teased. If she could have, she would have shot me a chilling glance, I’m sure. Though as we got to know Carly more, it was no surprise that she would identify with a young heroine that had to rage against strong forces to succeed.
One evening, around the same time, I had been pondering with Howard why it was that Carly was still having trouble sleeping. “She takes enough medicine to knock out an elephant,” I exclaimed. Howard shook his head in perplexed agreement. Carly was sitting in the den, well out of earshot. Or so I supposed.
The next day, while at work, Carly texted me, “Why did you call me an elephant?” I had no idea what she was talking about, as the question came out of context.
“What does she mean, Howard?” I typed back.
I could almost hear Howard laughing at the computer. “You said last night that she took enough medicine to knock out an elephant. She must have heard you.”
In addition to Carly’s hyper-visual acuity, we were coming to understand that she was gifted with what I termed peripheral hearing. She was able to pick up on conversations several rooms away, even when it appeared that she was not paying attention or was engaged in another activity.
Carly had put the two thoughts together, the elephant and the princess, and a few days later began her novella. Through the end of 2007 and into 2008, Carly worked on her story a few times a week. It didn’t really matter if we encouraged her or not; she only did it on her terms. S
he would sit at the computer and entire pages would pour out over the course of an afternoon. She never needed to go back and change words or edit her thoughts. They were complete scenes and narrative, carefully plotted out. Her writing was imaginative and witty, though sometimes her sentence structure was so complex and lacking in punctuation that I had to reread passages a few times to fully grasp the idea.
I want you to close your eyes and imagine a girl all alone in the middle of the jungle.
All she can hear are the sounds of the animals.
But what she does not know is that the sounds aren’t just random sounds.
In fact the animals are talking to each other.
People think that a lion’s roar is its way to scare you.
But let me tell you from experience that a roar is just not a ROAR.
Actually a roar can mean many things depending on the tone.
I think that humankind is just oblivious to things that have been around for many years.
I think humans are such silly creatures.
See us animals are much smarter because we understand what is going on around us.
But that’s another story for another day. I’m sorry I am just rambling on.
Ok.
So I think I was telling you that she heard sounds all around her.
They kept on getting closer and closer. Little did the girl know all us animals were talking about her.
Sorry for interrupting again, but I think I should tell you that every thousand years us animals need to pick the ruler of the world. And you thought we sit and do nothing all day. Well ok sorry for barging in again.
As all the animals got closer we all saw the same thing. That silly old owl that was supposed to be so smart, brought a human to be the next ruler. Not just a human but a twelve year old girl.
“No no no this cant be,” said a voice in the group.
We all knew who said it. Arthur was the oldest and most feared animal in the world.
His voice was so deep it could make mountains crumble to the ground. All the animals respected what he has to say.
Carly’s Voice Page 17