Wednesday, January 26, 2011

In the Echo Chamber

Mark Osteen
www.loyola.edu/fas/mosteen
www.oneofusbook.com

It’s easy to imagine that a deep silence hangs over people with autism, but nothing could be further from the truth, at least in our case. My autistic son Cameron has always been a noisy, histrionic child. He speaks most volubly with his body, and over the years we’ve learned to interpret this language: gleeful scissors-kicking jumps; contented or angry rocking; a myriad wordless shouts; the fine gradations in a face that to the uninitiated seems blank; an entire lexicon of claps.

Cam’s claps are his personal Morse code. A single clap after he has sung a line or done something he finds remarkable serves as an exclamation point: “How about that?!” A series of claps in front of his open mouth creates a booming effect that means “I’m getting mad,” or “I wish I could tell you what I mean.” Several loud claps and a grimace means “I’m anxious,” or “I don’t like what you told me” (e.g., “stop splashing water outside of the tub”). And let’s not forget those declarative rhythmic claps he favors in public places: “Cam is here!”

He also uses a few all-purpose words, such as “Coke” (which sometimes means “I want a Coke,” but sometimes means “I want ... something”) or “car” (“I don’t know where I want to go, but I want to get out of here”). And he never says plain old “no,” but always “No, okay.” Les and I inadvertently gave birth to this locution through conversations like this:

“Cam, do you want to go outside?”

“No.”

“Okay.”

The two words became a single thought. Those who don’t know him are confused by the phrase: does he mean no or yes? To us it seems to encapsulate Cam’s struggle with language: one word cancels the other.

Sometimes he gives forth a long stream of syllables that sound like gibberish but really aren’t. Over the years we’ve learned to decrypt it.

Cam’s Glossary
  1. “Loo, loo, loo,” or “lu-ee, lu-ee, ah lu-ee” (uttered in a low, even tone) = "I'm really contented,” or "I think you're cool,” or “I’m pleased with myself.” After a gymnastics lesson in 2000, Cam’s coach told me that he seemed to like Louie, another boy in the group. "He kept saying, 'Louie, Louie, Louie.'" I didn't have the heart to tell her that he was just naming his own satisfaction.
  2. "Hooka, tooka, tooka" = "This is really fun.”
  3. "Hey, hooh, huuh" =  “I’m deep in thought.”
  4. "Eeeh, geeta gee!" =  depending upon tone, anything from strong displeasure to panic.
  5. "Huh huh huh" (a fake laugh, followed by rocking)  = “Let’s laugh together!”
  6. “Hmmmm?” =  "Are you noticing me?" (The proper response is "Hmmmm?" followed by a conspiratorial laugh.)
  7. "Cut-tik, cut-tik, cut-tik" (whispered) = "I’m concentrating deeply."

I’ve often speculated that Cam’s expressions are his version of my wife Leslie’s quirky wordplay. This is a woman who can’t leave words alone. Thus “Watson” (her pet name for me) metamorphosed into “Wallace,” then “Walmart” and “walnut,” among others. Similarly, “to pee” evolved into “Peabo Bryson,” and then into “bryson.” A stupid person is not merely dim but “dimsky Korsakov,” or a “nylonhead.” A cold day isn’t “chilly”; it’s “chili-dog,” or “Chilliwack” (fans of ‘70s rock will recognize the allusion). How, we ask, could two such confirmed wordlovers manage to produce a nearly wordless child?

Though Cam’s sounds and multipurpose words do have meanings, they are blunt instruments -- poor tools for expressing anything complex or precise. Hence, we’ve had to become detectives or telepaths, deducing our son’s emotions, desires, and thoughts from his facial expressions, gestures, cryptic syllables. Yet we’ve often failed at the guessing game, partly because his language is so rudimentary, partly because his thinking is so different from ours. At times we’ve felt like poor, beleaguered Alice, protesting to pugnacious Humpty Dumpty that “glory” doesn’t mean, as he claims, “a nice knock-down argument.”

“‘When I use a word,’ Humpty Dumpty said, in a rather scornful tone, ‘it means just what I choose it to mean—neither more nor less.’”

Unlike Humpty, Cam can’t enforce his definitions. Instead his language embodies the eggman’s other major trait—fragility. Once Cam’s language shattered, all of the teachers and all of the speech therapists couldn’t put it together again.

Starting when Cam was four, Leslie I met yearly with his team of educators and therapists. Each year we stressed the same points; we could have recorded the conversation when he was four and played it back when he was eleven: “We think the main focus should be on communication. If he can express his wishes, he won’t have to resort to slapping, pinching and biting.” Every year the team members nodded sagely and outlined a plan. And the next year Cam had made little or no progress. We seemed to live in a gigantic echo chamber where our words bounced back at us year after year.

And so did Cam: for years his spoken language consisted mostly of echolalia. Many experts hold that echolalia isn’t true language, that it lacks the originality, spontaneity and give-and-take of real conversation. Famed neurologist Oliver Sacks even claims that autistic echolalia is “purely automatic” and “carries no emotion, no intentionality.”

Cam’s echolalia did often sound like mechanical parroting. If, for example, we asked him, “Do you want a banana or an orange?” he’s say “orange”; but if we reversed the order, he’d say “banana.” He couldn’t seem to remember that we’d offered two choices. Even when we coached him, his “improved” responses were often just redoubled echoes: “Do you want bread?” “Bread.” “Don’t repeat; say ‘yes.’” “Yes.” “Do you want bread?” “Bread, yes.”

But other researchers have shown that echolalia serves a variety of linguistic functions, and autistic authors such as Jasmine O’Neill and Donna Williams write that their childhood echolalia gave them time to process others’ words and a way to join conversations.  In any case, our own experiences have proven Sacks’s hypothesis wrong—or at least incomplete. For example, in the bread exchange, Cam isn’t just echoing; he’s also assenting. And sometimes Cam’s memorized scripts have a metonymic relationship with the circumstances. Thus when Cam wanted to end a speech therapy session, he said, “Take your shoes off,” by which he meant “Put your shoes on”—i.e., “let’s get ready to go home.”

Cam still uses phrases he learned from old toddler books or kids’ songs to express himself. When he looks at Les or me and says, “Guess what, Max?” we are to respond with “What?”—the next sentence in the book Max’s Christmas, which he memorized at age two—and then we must recite the entire book. These questions and answers may not be “true” conversation, but they involve give and take, shared attention and associations. They are his way of asking for help or intimacy.

Sometimes an echo’s meaning is quite clear. One morning, for example, he bounded into our room, crawled into our bed, and led us through Barney’s theme song: "I love you, you love me / We're a happy family. . . .” He knew exactly what he meant and so did we. I’ve always hated that song, but when Cam sang it, the saccharine sentiment carried a redeeming poignancy.

Such incidents inspire wonder at his capacity to comment on his world, to compensate for his disability by selecting the right script. And once in awhile, his ritualized monologues become less cryptic, as he composes an idiosyncratic “mash-up” that mixes snatches of songs, words and near-words in a strange and beautiful poetry: “Heeka-deeka duh, ah loo, ah loo, ah yuh you, hoppeen on one foot, huh-huh.” It’s as though he has traveled to some distant place and is reporting what he’s seen there. Who could doubt that these tactics display creativity and intelligence?

Yet Cam’s inability to generate novel phrases remains deeply debilitating. Sometimes, for instance, the scripts interfere with his meaning. Let’s say he wants to go for a ride, and we ask him to use proper words.

“Cam, what do you want?”

“Car.”

“Can you say ‘I want to go in the car?’”

“Car, yes.”

“I want.”

“Want.”

“To go.”

“Go.”

“In the...”

“Bed.”

Why does he say “bed” when he means car? Because “in the” precedes “bed” in the memorized phrase “sleep in the bed.” He seems to forget the original request once the sentence is broken into parts, and instead of recalling that in this context the phrase ends with “car,” he lets the script “in the bed” usurp it. Yet he knows full well that “bed” is the wrong answer. So after saying “bed,” he’ll growl or clap angrily, as if to say, “Damn it, I don’t know why I said that, because it isn’t what I meant.”

Sentences are thin-shelled eggs; once broken, they can’t be reassembled.

We neurotypicals flip through our mental rolodex until we find le mot juste -- the appropriate word with the right nuances. Usually we retrieve at least an approximation. But even when Cam has used a given word many times, he still must hunt laboriously for it like someone looking for pictures in a dark, crowded attic. He’ll stare into your eyes and scan your face intently. You gaze back at him, trying to will the words into his mind. He grabs the closest approximation--a garbled word, a metonym--but there may be no picture for what he wants to say. How, for example, can his concrete mind convey something like: “I’m anxious about entering this noisy, unfamiliar building?” Shouting “Coke!” won’t really do the job.

When Cam was about nine, we started using assistive technology devices: first an Easy Talk machine (a console of large buttons with pictures pasted on them; you push the button and it says a recorded phrase), then a Language Master. The gave me the eerie feeling that it had snatched Cam’s lost words from the ether to give them fleeting expression.

The machine said what he couldn’t, and said it clearly every time. But we could never create enough cards for all the possible situations in his life: the machine could not say, “I feel sick,” or “I’m afraid,” or “That sound hurts my ears.”

Noted autistic author Temple Grandin writes that she thinks not in words but in pictures. Is Cam’s head also filled with a slideshow of captionless illustrations? If so, does he maintain that voice in his head that comments on his activities, makes long- and short-term plans, tells him what to do next? Sacks theorizes that many autists can’t connect individual experiences into a continuous narrative, and thus exist in a pure present of “vivid, isolated moments, unconnected with each other or with [themselves].” Anyone living in such a “pure present” would seem to lack the self-awareness we identify with true human consciousness.

Our son has sometimes behaved as if he lived in a pure present, failing to remember an activity from one day to the next, or not recognizing people he’s known for years. But sometimes he says something so appropriate you know he must tell his own story.

When he was about five we drove from Baltimore to Atlantic City so I could take the test to become a Jeopardy! contestant. The long day tapped out Cam’s shallow reserves of patience. As we wearily rode the elevator back to the parking lot, two grizzled gents, reeking of smoke and stale liquor, boarded the car with us. This was the final indignity: as soon as the door thumped shut Cam started shrieking. Then, suddenly, he stopped and shouted, with perfect clarity, "I need to go crazy!"

One of the casino habitués nodded sagely and said, "We feel the same way, kid."

Cam had made perfect sense: this elevator is too small, I don’t know these people, and I want to scream! Such moments prove that he does narrate his life, and even has some understanding of his condition. They also remind us again how often he reaches for words but comes up empty. And they make me wonder: does he think fluently in words but stumble only when trying to say them?

Other linguistic eccentricities invite further speculation. For example, Cam often uses “I” for “you” and “he” for “I.” Since nobody has ever called him “I,” he figures--with sound autistic logic--that he is “he.” But he’s not sure. So he takes a middle ground, employing a pronoun that combines “he” and “I”: “Ee take a baff.”

If a person has trouble using “I,” you have to wonder if he thinks of himself as an “I.” Does Cam live at a distance from himself, responding to his own acts with bewilderment, as if they’ve issued from some other “he”—maybe the other person he calls into being when he watches his fingers create shadows. On the other hand, perhaps the problem is that he can’t imagine himself as another person might see him. Given this “theory of mind”dysfunction (the notion that autistic people don’t understand others’ thoughts), perhaps Cam’s problem is not that he’s too distant from himself, but that he can’t distance himself from his own thoughts and actions, can never see outside his own obsessions, never breach the walls of his echo chamber.

Because our son so seldom talked, we fell into the bad habit of treating him as if he couldn’t hear. When we was very young and nothing seemed to penetrate his cocoon, he might as well have been deaf. In later years, however, he occasionally showed us quite plainly that he understood our words. One day I was talking with our head therapist about how hard it was for Cam to think of the right words, and started recounting the history of his language problems. After a couple of minutes he put his head on her shoulder, then approached me, growling and gnawing fiercely on his rubber chew toy.

The reason dawned on me: "I think he wants us to stop talking about him," I said. "I think it bothers him." First he seemed to want sympathy, then had acted embarrassed, and finally irritated. I realized with chagrin that we’d been treating him like an infant or pet. Our life might have been easier if he were: at least then we could reliably gauge his cognitive abilities.

One morning, after Les told Cam--then aged eleven--that he couldn't go outside until after breakfast, he launched into one of his wordless monologues, concluding with a phrase that sounded like, "That's annoying."

“Did you hear that?” Leslie said to me.

“I did. Is that even possible?”

We shook our heads, wondering all over again if normal language lay somewhere in his brain, misfiled and unavailable. When those spotlights of comprehension shine through the fog of the disorder, you no longer trust your judgment. In the wake of such utterances, our hard-won accommodation to reality is, like Humpty’s shell, shattered all over again.

But then we realized that, despite a life of setbacks, Cam has never given up trying to talk. How, then, can we ever stop listening?

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One of Us: A Family's Life with AutismExcerpted from One of Us: A Family's Life with Autism by Mark Osteen, published by the University of Missouri Press. To order this book, please call (800) 621-2736 or purchase online at press.umsystem.edu.