CHAPTER 8, INHUMANITY (excerpt)


The hospital had an imposing yet neglected air about it, like a wealthy old lady left to live alone without any family. The multi-story building sat on the side of a noisy highway. To get there, we walked along a narrow sidewalk littered with weeds and puddles of mud. In front of the sliding glass doors stood a large planter holding a few browning carnations. Inside, a gentleman with wooly eyebrows ushered us towards the elevators to the Developmental Disorders Clinic located on the ninth floor.

I’d heard about the Developmental Disorders Clinic from Luisa. The Clinic had a reputation for evaluating children very thoroughly, and as a result it was highly respected. The doctors were also known to be very reluctant to give a firm autism diagnosis. Luisa told me that all of the children that she had referred to the Clinic had ultimately received the alternative diagnosis of PDD (Pervasive Developmental Disorder), not autism. PDD is a catchall diagnosis for children who meet some, but not all, of the criteria for autism, or whose symptoms begin after age three. For some of the mothers I’d spoken to, the diagnosis of PDD had an unspoken implication: it meant that their child’s disorder was not as “severe” as a child with “real” autism.

We rode the hospital elevator in silence, Christopher holding Elmo in one hand and my hand in the other. Inside Developmental Disorder Clinic was a waiting area with plastic covered benches and a reception desk. Behind the desk sat an older woman.

“Can I help you?” she asked. I introduced Christopher, and after a thirty-minute wait, we were led into a room with a large two-way mirror in one wall; I assumed people could be watching us from the other side. We sat down on a bench, and I looked outside at the Boston sky — gray except for a few rays of sun that broke through the clouds. Murky light shone through the dirty window leaving dark shadows on the linoleum floor that Christopher stared at. After a while, he squatted and touched each spot, one by one. Then he began again, shuffling between dark spots until ten minutes later when an older man shuffled in.

“Hello, Mrs. McIntosh. Hello, Christopher.” The man looked toward Christopher who did not seem to notice him.

“I’m Dr. Rob. Since you’ve already been through the parent interview on the phone, we’d like to just observe Christopher for a while. So, please interact with him as you normally would. See if he would like to play with any of these toys or books. I’ll be back in a little while and then we’ll run some more tests, okay?”

“Goodbye, Christopher,” he said loudly, crouching down low, inches from Christopher’s face. Christopher was still touching the dusty shadows on the floor and did not look up. The door closed. I looked around the room, feeling self-conscious about the one-way mirror. A small table with two little chairs and a shelf with a few toys and books stood near the far wall. For a second, I found myself wondering what a good mother might do in this situation.

“Hey buddy, let’s play,” I said, forcing my thoughts aside. I spotted the animal puzzle on the shelf. “Look — animals!” I grabbed the puzzle and brought it to him. Christopher played with the puzzle for the next fifteen minutes, taking each piece out of its slot, moving it slowly in front of his face, then to the side, twisting the piece in his hand quickly before putting it back in its spot. Knowing the doctors wanted to watch Christopher do other things, I brought over more toys — books, trucks, blocks. “Look Christopher — a red truck!” I said. I held each one up to him, but to no avail. He only wanted the animal puzzle. I watched him and imagined, as I often did, how his mind must work. I envisioned pictures and shapes floating about, everything sorted just so. In the back of my mind, I was quietly hoping for a miracle. Maybe Christopher didn’t have autism at all? After all, this was the first time he’d been formally evaluated. Could it be that everyone else had gotten it wrong?

________

Christopher had two main concepts he understood: objects and rules. Objects were things he knew and liked, like food, books, puzzles, Mike, and me. Objects not on the list didn’t exist to him. Rules were created only by him, and he alone understood their logic. Each rule defined the things an object must do: plastic animals were lined up in rows or circles, arranged by type and size; books were quickly memorized then read back in exactly the same way each time. He flipped the pages, I said the words. Pot lids were for spinning on their sides. The pots themselves, however, as well as bowls, spoons, etc., were not even present in his mind.

If I handed Christopher something, he would look at it to determine if it was on the list, and if not, the item would be dropped and ignored. Otherwise, it would be spun or sorted or held up to the sides of his eyes. This was my son’s world, and no matter what I seemed to do, it remained unchanged. It was like he had created a wooden box to live in. He was inside the box — its walls papered with lists of objects and rules, while I stood outside banging on the walls, trying in vain to get his attention.

The evaluation took about three hours. After the initial observation, the doctors performed an array of tests. A speech specialist analyzed Christopher’s language skills. A developmental pediatrician measured Christopher’s motor ability, observing how he walked, his ability to climb stairs, how he picked up objects with his hands and the way he moved his mouth. Dr. Rob sat Christopher down at a table and attempted to play some games with him, without much success.

There were many things Christopher wouldn’t do. He wouldn’t hold a crayon or draw. He wouldn’t stick out his tongue or open his mouth. He wouldn’t pretend to be a dog and crawl on all fours. At first he responded to these requests stoically, staring at the ground in silence. After an hour or so he crumpled into a crying, sweaty mess and I had to carry him around from room to room. “You’re doing great, Christopher,” I whispered into his damp ear. “We’ll be home soon.”

“Are we almost finished?” I asked one doctor after more than two hours of testing. “I think Christopher is done with this.”

He looked at me with sympathy. “Soon,” he said. “I wish we didn’t have to go through all the sub-tests with these types of kids — it’s so hard on them.”

“Types?” I asked.

He squinted and breathed out audibly. “I’m sorry, I shouldn’t have said that. We can talk more about Christopher’s prognosis at the parent meeting.”

Prognosis? I stared at the man and wished I could read his mind.

________

Mike and I drove to Children’s Hospital to hear the results two weeks later. The sky was gray again, the air thick with the smell of wet earth and rain.

“What do we want to get out of this meeting?” Mike asked as he pulled off the turnpike, frowning at the slowing cars. Mike was what I would call a “Boston driver,” speeding up quickly and racing around slower drivers while cursing under his breath.

“Slow down,” I said loudly.

“I’m fine. You Californians just don’t know how to drive,” he said. Still, he slowed as we pulled into the parking structure next to the hospital.

“I’m assuming they’ll diagnose him with PDD. Luisa told me that’s the diagnosis they usually give children like Christopher,” I said. “But you never know. Maybe they’ll surprise us.”

“How?”

“I don’t know. Maybe he’s not really autistic, maybe he’s just speech delayed?” This was the first time I’d voiced this particular hope, and it sounded absurd even as it came out of my mouth.

“Heather, do you really think that?” Mike turned off the car and looked at me.

“No, I guess not. But who are we to know?” Mike raised his eyebrows but said nothing. He turned and climbed out of the car.

The waiting room in the Developmental Disorders Clinic was stuffy, its large mullioned windows opened to the humid air. We sat in plastic chairs against a bare wall near the reception desk. Mike reached for a magazine with a picture of a chubby child smiling on the cover. We sat for almost half an hour in silence; Mike flipped the pages while I watched the room quietly. A young Indian couple entered and sat down near us. The woman looked as if she’d been crying for days; gray half-circles lay under her large russet eyes. Minutes later, the couple was ushered into the back room by a soft-spoken older doctor. “I’m so sorry,” he whispered as they walked. For a few minutes, I played out the possible scenarios this couple may have experienced. Maybe their child had died, but of what? I didn’t think a child could a child die of autism. Maybe their child had some other kind of disease? I’d read about Fragile X syndrome, a disorder that is similar to autism but more limiting, with additional problems like mental retardation, an elongated face and enlarged ears. I’d already asked our pediatrician to test Christopher for Fragile X, since it was a genetic disorder that could be identified by a blood test. Christopher did not have it.

“We’re ready for you,” the receptionist said.

We were led into a large conference room. Around an oval-shaped table sat about a dozen people, most whom I’d never met before, and a few I recognized from the day of Christopher’s evaluation. Two empty chairs stood next to him.

“Please sit,” said Dr. Rob, who sat at the head of the table.

“Thanks,” I said. “This is Mike, Christopher’s dad.”

“Good to finally meet you, Mike. We enjoyed visiting with your son Christopher a few weeks ago,” said Dr. Rob, eyes dull behind shiny metal glasses, his silver hair floating in loose curls around his head. “Let’s go over the results of the testing, and then we can talk about our recommendations.” I stared at the solemn faces seated around us. Under the table, Mike put his hand on my knee.

“First, we want you to know that we did a very thorough evaluation.” Dr. Rappaport smiled reassuringly. “We used several tests to measure Christopher’s level of development compared to typical two-year-old children.” The speech pathologist, proceeded to describe Christopher’s communication skills. Patting her waist-length blond hair as she spoke, she told us that Christopher’s verbal language measured at the same level as a six-month-old baby. His receptive skills, the amount of language he understood, measured at the level of a one-year-old. She had found significant impairments, not only in Christopher’s language, but also in his social and play skills. Christopher was not in the normal range in any of these areas.

Next we heard from the developmental pediatrician, a confident man with piercing blue eyes and thick dark hair. He told us that Christopher measured in the normal range for gross motor skills, but was significantly delayed in fine and oral motor skills. When he finished, the room was uncomfortably silent. I wasn’t sure what to say.

“This is the hard part for any parent to hear,” said Dr. Rob, leaning in towards Mike and me. “We feel we have enough information for a conclusive diagnosis in this case. Your son Christopher has all the characteristics of autism disorder.” Everybody at the table was watching Mike and me.

Mike broke the silence. “Don’t you usually diagnose children with PDD?”

“Not in this case. Everyone here unanimously agrees that Christopher meets the criteria for the autism diagnosis.”

“But, isn’t he a bit young for a diagnosis of autism disorder? Remember he only just turned two.” Mike’s voice was strangely angry, his jaw set forward. I placed my hand over his, which now gripped my knee. I stared at the tall windows that lined the exterior wall of the conference room; the metal bars that hung outside sliced the blue sky into squares, blocking entry or exit. In that moment all I wanted was to escape, to become invisible. To exist in a place where words didn’t matter.

“There are a few things we’d like to recommend for Christopher,” Dr. Rob continued. “First, you need to understand that this is a lifelong disorder. You should expect that you will be supporting Christopher in his development and everyday needs for the rest of his life.”

“What do you think his chances are for recovery?” I said. “We’ve read the studies and-”

“Mrs. McIntosh, I need to caution you here. There are a lot of people who will tell you things about autism that just aren’t true. The chances of recovery are virtually none. You both need to understand this.”

I swallowed hard, and then began again. “But what about ABA?”

“We don’t recommend ABA for children with autism. The kids we know who receive ABA don’t get better. Honestly, it’s not effective, and worse — it tends to make kids act in a very unnatural way, like robots.”

After a few moments, the speech pathologist spoke. “It’s better to be autistic than inhuman,” she said. “Don’t you agree?”