Pri-Med Midwest Conference Keynote Address

The Spectacular Art of Heeding the Patient
presented June 2006

When I got Jim’s letter asking me to come and speak to you today, I read the beginning of it and thought, “How nice!” And then near the end I read the words, “We expect at least 2500 people in the audience for your speech…” and my field of vision started to swim and I started to reach for the oxygen mask. I speak every day to classes of 25 students, but 25 with two zeroes after it! This letter must be for somebody else, I thought.

But when I recovered, it hit me how wonderful this was. I wrote a book about raising my severely autistic son (book cover) and here I was being invited to share that story with a very distinguished gathering of medical people.

Of course, I feel pretty inadequate talking to you about the “Spectacular Art of Heeding the Patient.” I wish for this half-hour at least that I had some Dr. Phil-style 12-step How-to-Heed-the-Patient Program  Then you all could walk away afterwards saying, like I imagine guests say after Dr. Phil’s show, “Gosh, thanks Dr. Bob! I see the light! I’ll never not heed the patient again!”

But this isn’t TV land, and I have no easy program. All I have is a story from which you might be able to extract a hint or two. I chose my title for this talk carefully because I know “heeding” the patient—that is, listening with attentiveness, judgment, intelligence—is inded a “spectacular” art. It can be a devilishly hard thing to do and many things war against it.

Time is the big one. Some of you, I’m sure, have to see more patients in one day than I’ve seen doctors in the whole of my son’s life. Questionable patient testimony is another. Sometimes patients—especially parents talking about their children—must seem like what English professors call “unreliable narrators” in works of fiction. Their words often have to be read between the lines because their point of view is so clouded by powerful emotion and self-serving explanations.

The patient’s ignorance is yet another. Patients, most of whom did not go to medical school—that’s why they’ve come to you in the first place—increasingly walk through the door with explanations for their trouble gleaned from the Internet, magazines, newspapers, friends and television commercials that tell them to “Ask your doctor about this mysterious product so you too can feel like these good-looking people running along a beach.”    Now I have a strange sympathy with doctors who don’t listen because I’m an English professor who sometimes doesn’t listen. I teach essay writing to young immigrant people whose English is very imperfect, and since I’m older, have a Ph.D., publish articles myself and have taught for 25 years, I’ve got a high Been-There-Done-That Quotient myself. After all, they take my classes because I’m the expert and they’re not, so my ability to heed them—pay close attention, be patient enough to wait and elicit more from them, and ultimately learn from them—can sometimes be pretty limited.

So, all I can really do is share with you my own expertise on the one subject I definitely know more about than you do: me—and my son, and my wife, and our adventures with the medical world.

This is my son right now, [#9 Walker in tie] a picture taken not too long ago. He looks just fabulous, if I do say so myself. He almost always does in a photograph. But a video camera trailing him throughout the day would reveal a very different boy. At 18, he can’t leave the house alone, can’t hold a conversation, can’t study or take a test, can’t tie his shoes, and most horrible of all, can’t — 90% of the time–tell you what’s on his mind.  He shows no signs, as of this moment, of ever being able to support himself and live independently. But I should add that his mother Ellen and I, and his teachers, still have vigorous hopes, and so does Walker himself.

Here’s another picture of Walker, taken near the beginning of our saga.#2 Ellen, me, W]—He’s the one in the white cap; that’s his parent fan club huddling near him. (Isn’t this great? I get to show family photographs and pictures of my kids to an audience of 2500  people who can’t run screaming for the exits!) For Ellen and me, Walker was our object of worship and we were his cult. Certainly, he was one of the most closely-watched kids in the United States of 1985. Everything he did was a miracle, a work of genius.

Things that might seem troubling about him didn’t trouble us much. He didn’t play with toys in normal ways, always seemed to do odd but interesting things with them, but we wrote that off as the creativity of a precocious kid. He never really got going with speaking, even lapsed into silence about age 2, but he was spelling and reading and working on these skills like some tiny scholar.

And the happiness. This is the boy that greeted us each day: [#3 W grinning over railing of crib] We’d walk into his room and he’d beam at us like we’d just come with the bail money. We felt like walking miracles of parenting to be raising a boy who adored us so. To us the great stunts of achievement like spelling and counting and reading were all of a piece with his love for us.

This little sequence tells it all, I think: [#4  Ellen and W at table, writing] Here’s Ellen writing out a song Walker knew from a video he’d seen. As she writes the words, he reads them aloud, and when he recognizes the song, his cheeks get red with pleasure, and he’s almost standing on the chair. [#5 W spontaneously hugging Ellen] When he finishes reading the words, he gives his mother a big hug.

This sort of feat of scholarly achievement was never isolated from his love for us; it was a way for the oddly silent boy to get through to us, to connect.            Here’s another picture.[#6  W running up and down hall] Here he’s smiling and running up and down the hall with words we’ve printed, and he’s read aloud. Now I’m a writer and English teacher and I love words, but I can’t honestly I say I love words as much as Walker did. For him they were like pals he could see and touch and celebrate and cling to because they connected him to his parents.

And another revealing picture. [#7 W performing “reading”] It looks like he’s reading, doesn’t it? But he’s posing, like a child modeling pajamas in the Sears catalogue, not actually reading. I remember asking him to sit on the couch and let me take his picture reading a book. So when you know this, I think you can see from the look on his face that the picture is sheer ego, his impression of dutiful cuteness.

Now I ask you, Are these pictures your idea of Rain Man, of a stereotypical autistic kid, rocking in a corner, lost in a world of his own, hating to be touched, uninterested in the people around him and more interested in objects than in people?

It sure wasn’t ours. And it’s still not:[#9 W in tie]

But by the time he was 2 and a half, however, we wanted some explanation of why he wasn’t speaking and wanted to answer a few questions we had: Why was he so smart, yet didn’t point at things? Why was he so uninterested in gifts and new toys but so consistently thrilled with people?   Why would he only intermittently look at things we pointed to and often avoid our eyes if we were speaking to him? Why was he constantly moving?

Our concerns about him were mixed with not-very-concealed delight: we half-expected a doctor to observe him and say something like, “Well, Mr. and Mrs. Hughes, what you have here is the sort of superior being medical science runs across every, oh, five hundred years or so. Treasure him, keep his spirit alive, and most important, don’t get in his way.”

So we made an appointment with a very highly-recommended pediatric neurologist, whom I’ll call Pediatric Neurologist #1.

Because I had to teach that morning, Ellen took Walker to the appointment. Moments before the doctor arrived in the examining room, Ellen realized that a completely unforeseen but potentially devastating factor was about to be introduced into the examination: poop. It’s difficult to describe the role poop played in our family life, but if we were the UN Security Council, poop, as an issue, would rank with nuclear testing or chemical weapons stockpiling. Walker, still in diapers but a discreet gentleman, always needed to be left alone for this operation. But this was impossible once the doctor entered the room and immediately started looking at his watch. While the doctor looked at him, Walker stood off alone looking intently at a telephone in the room.

As Ellen tried to explain what Walker needed to do, the doctor was already making up his mind. “Mom,” he said, establishing the status relationships in the room,  “Walker seems to be off in a world of his own. He is clearly object-oriented.”  But Ellen begged him, so he reluctantly let her take Walker into the hall to change his diaper. When they returned, and more minutes had ticked away, Walker hovered around the doctor with the telephone receiver in his hand trying to hold it up to the doctor’s face. But he was unnervingly free of any natural rapport with a friendly child, ignored Walker, openly shrank from his touch, and repeated the statement that Walker was “object-oriented.”

When Ellen, racing against the doctor’s watch, gave him the ultra-abridged version of what we had learned about Walker, about his love of dancing—he used to stand in front of a video we had of Fred Astaire and try to do his moves, complete with cane and top hat—his love of words, his affection for people, his intelligence, the doctor had the irritated look of a man who is making a tremendous effort not to roll his eyes.

“So what do you think, doctor?” Ellen nervously asked when he was walking out the door.

“Well, Mom, I want some further tests done, but I don’t hold out any hope for this child,” was his response.

Just like that: Bang, you’re dead, after an examination of ten minutes.

Ellen took a deep breath and put together the kind of sentence I only dream about days after a conversation: “Then I guess that’s why God didn’t make you his mother.”

Getting in the last word, the good doctor shot back: “Down the road, I see the child in an institution.” Then he left.

As Ellen related this story to me later that day, I was appalled and amazed. “This is outrageous!” I said over and over as I stormed around the living room. “Walker HUGHES is object-oriented?!” I shouted, proving it was probably a good thing I hadn’t been there for the exam.

When we received his written report, the neurologist neglected to mention his peevish, catastrophic prognosis. He repeated the description “object-oriented,” and called Walker “developmentally delayed.” He also made an interesting distinction throughout his report. Any observation he made was framed as fact, as in, “Walker displays object orientation.” Any observation Ellen made was framed as a somewhat loony opinion with no connection with his general description, as in, “Mother says dances like Fred Astaire” or “Mother says likes bluegrass music.” He also recommended a test for giantism in spite of the fact that Ellen had pointed out that Walker was only in the 90th percentile for height and had tall parents and grandparents.

When we told our friends the story, they too were appalled, amazed, outraged. As time went by and we talked to more and more parents and read other accounts, we realized that our storyófar from being the grimly fascinating tale we thought it to beówas actually commonplace and redundant, as predictable as the millionth rerun of an episode of I Love Lucy.

But that day Ellen and I sat discussing the disturbing meeting with Pediatric Neurologist #1 going over every word he said, we couldn’t put the experience in any sort of context. All we knew was that, as wrong-headed as we knew the doctor was, his opinion probably indicated trouble for the future.  We didn’t know much about it, but we’d seen enough films and TV shows to know that a child who behaved oddly, had no speech, looked normal, and was said to be object-oriented was probably veering into the category of children who “lived autistically in their own world.” But we knew that Walker was, both in a deep and surface sense, living in our world, strongly engaged with us and the people in his life.

So our happiness about Walker became mixed with doubt and defensiveness and our glowing reports about his doings to friends and family and doctors would be increasingly met with a mystified reaction that boiled down to: Why are these people smiling?

As we sat on the couch in our living room, speculating worriedly about Walker’s future, we noticed him sitting on the floor in the middle of a pile of his books, intently turning the pages of one after another of them, frowning and staring in concentration and interest. Ellen said, “Look at him. He has hopes. He loves words. He loves us. Give up on him? I don’t think so!”

We watched as he stared at a picture in a book, stopped, got very excited, then turned the pages back to a similar picture on the cover, stared again, then went back to the picture again, noticing something—a similarity? a difference?—looking like a two-year-old version of an excited astronomer spotting anomalies in star positions in Hubble telescope photographs. We shifted conversational gears and started to chat in our usual movie fan-like, cultist way about how wonderful he was. It hit us that we were blessed with a happy, loving, smart little boy who had his whole life ahead of him.

So: This interview was a train wreck all around. What had this doctor done? He was actually offended by Ellen’s lack of submissiveness, so he had intentionally tried to wipe the smile off her face. He treated her like a delusional “mom” who was creating sort of an imaginary boy that had no relation to the robotic kid he thought he saw, and he was cocky enough to believe he could spot in just a few minutes.

His words “I hold out no hope for this child” were like a battle cry to our ears. No parent can hear words like that and not feel like fighting back. They set us up almost in an adversary position to medical science at a point where medicine should have been our big ally, our possible savior.

The doctor failed to realize that far more was at stake here than a diagnosis. He was dealing with a mother who loved her child and was trying to put the best spin on him. She was facing a lifetime of heavy  responsibility with a possibly disabled child. And if she internalized what the doctor had said, and started to look at Walker from the doctor’s angle, the connection she felt with her kid would slowly but surely vanish, and she would have been left with an alien child living in in the house. And Walker would have been lonelier, left with parents who were no longer friends. An object-oriented child was a child who wasn’t and could never become mother and father-oriented.

Yet another misfortune: The doctor himself missed a chance to learn something from a very smart and observant person–my wife. She knew things about her son that weren’t in the textbooks, that were clearly interesting anomolies to a doctor locked into the profile of autism common in 1988.

The key quality of autism in psychology textbooks at the time was that the child could not form a strong bond with his parents. Our idea that we had in fact formed this bond meant only one thing to the doctor: we were deluded. The doctor at the very least should have said to himself, Now this is interesting!  But nothing is very interesting to someone more concerned with role-playing in this crucial situation than with what’s humanly at stake.

The one good consequence, however, was this: It threw Ellen and me back on ourselves and we learned to trust our judgement and examine our child even more closely. We became better parents by learning to trust ourselves, truly befriend our child, and work more earnestly with him.

Understanding of autism has come a long way since this interview in 1988. Today we know that autism appears across a broad spectrum, with low-functioning people like my son at one end and very successful, even prominent people on the high-functioning end. When it’s understood this way, autism is now considered, according to the latest National Center for Disease Control statistics, to afflict 1 in 166 children nationally.

Unlike when it was first “discovered,” as it were, in the 1940s when cold, affectionless, “refrigerator”mothers were blamed for creating the problem in their children, we now know for certain that it has nothing to do with good or bad parenting. It’s a genetically-based neurological problem and more and more research is being done to find answers in the brain and in genetics. There is still no agreed-upon cure for autism, though some very hopeful results have been achieved and research is yielding promising prospects. But in 1988, the orthodox prognosis was There is no cure and parents who resist this idea are in denial.

But though research has improved, the popular understanding of autism—which usually matched that of most experts we encountered over the years—was very slow in catching up, and still hasn’t.

Thus Ellen’s collision with the great pediatric neurologist was repeated over and over with various pediatricians, school evaluators, psychologists, and speech therapists, most of whom saw 3 or 4 autistic traits in Walker, so they saw the dozen or so other traits we described in the light of the label. He was “an autistic,” so his story began and ended with this individuality-killing label.

It seemed that with each new expert we met, we were called upon to give what Ellen and I had come to call The Speech, our tag-team narrative of Walker’s story that we had already rattled off so often it seemed like some kind of long-running Broadway show. Listening to The Speech must have been a weird experience for anyone committed to the dogma of autism-as-unqualified-disaster. Our strangeness revealed itself in our enthusiasm as we warmed to the subject: our admiration of Walker’s spirit, intelligence and abilities; our insistence on the significance of small details of his behavior; our spooky unanimity of opinion (we only disagreed to insist that the other’s statement was even more true than it seemed).

We insisted on many things that didn’t fit the profile our expert had learned in school. For instance, we would tell him or her that Walker would occasionally utter a completely intelligent, precise sentence out of nowhere. Since this factoid didn’t fit the profile, it simply could not have happened.

Usually this tall tale was met with curious body language. Our listener might nod and squint and smile sadly and lean hard on repetition of the “O-Kaaaaayyyyy” that means “Will these people never stop talking?” It often seemed that the medical expert was worried more about the appearance of authority in the interview situation than with actually discovering something. We’d feel patronized, like we were  Pacific islanders being preached to by European missionaries. Anything we said that didn’t fit the profile was ignored and our interviewer would only come back to the points he or she knew about.

If we had found a therapist or teacher or psychologist or any doctor who said, “Really? That’s interesting. I wonder what that means?” we would have followed this person to the ends of the earth.

As it is, however, we did eventually find terrific doctors and therapists and educators, and our discovery usually hinged on that first interview.

A video of our first appointment with Pediatric Neurologist Number 2 would play like a Three Stooges short: three adults shouting to be heard over the yelling of a big eleven-year-old boy; the tall, bald father wrestling with the kid while trying to talk, peeling the boy’s fingers off the doorknob and throwing his arms and legs over him; the attractive mother nervously smiling and shouting the boy’s medical history, trying to absorb what the doctor is saying while monitoring husband and son; both parents, when they can be heard, using words like “intelligent” and “cooperative” and “friendly” to describe the wild kid jumping hysterically in place, tearing at the door and pulling on his father’s hand; the friendly, energetic doctor strangely calm while trying to examine the boy who is yelling “Da da ees pareez!” and “No Donald’s today!” into the doctor’s face; and the overall impression of pandemonium—if the scene isn’t intended as farce, it must be tragedy.

The video, however, would not reveal what this meeting in fact was: one of the high points of our lives.

The doctor wanted to know everything we had noticed and thought about Walker, even our more hare-brained ideas, all of our unscientific, nonempirical, agonizingly minute observations. Far from being turned off by our enthusiasm about our son, he welcomed it. Far from thinking of Walker as hopeless, he saw possibilities in him.

In the middle of the raucous interview, I offered to take Walker out to the car so Ellen and he could talk. “Oh, no,” he said loudly and brightly. “I’m learning a lot from just watching him right now. Everything you’re telling me about him fits what I’m seeing.”

It does?! we thought.

As we drove home on the expressway, we felt elated, as though the seatbelts we wore were the only things keeping us from floating around weightless inside the car. Here was a doctor who spoke to us like we were grownups, who took us seriously, who didn’t see us as the Duke and Duchess of Denial, who thought Walker was as interesting as we did, and most of all, who held out hope that Walker could get better and wasn’t afraid of looking like a chump if he didn’t.

Walker is now 18. He still cannot hold a conversation and his prospects for ever holding down a job and living on his own are not good. But take a look at him here:

[#8 W watching me on TV]

He’s watching me talk about him during a Channel 7 news interview on TV. Look at his joy. He’s just thrilled with his dad, thrilled to see him on TV, thrilled to be talked about. This one picture contradicts much of the conventional wisdom about autism. A new unproven, retrograde theory, one that’s gotten huge press and is sure to influence many pediatricians and therapists all over the world, is that the one thing all autistic people have in common is an inability to empathize with others.

But look here. Empathy is no problem for this severely autistic young man. He shows greater excitement over his dad’s little TV moment than anybody could. So, therefore, much, much that is written about autism is still, right up to this very minute, misleading. Medical people have to keep an open mind, listen to parents, admit limitations, and get on the team that helps keep hope alive.

I got a lesson in this just a few weeks ago. A student in my class appeared at my office door wanting to discuss her last paper. It wasn’t my office hour and I had just gotten a moment free to respond to my e-mail.  She is Buddhist monk, with a shaved head, long grey habit, and horrible English. She had failed my class the previous semester and had enrolled in my class again, trying once again to scale the seemingly unscalable wall of English.

The very sight of her gave me a headache.

But suddenly, a tsunami of guilt passed over my face.  I put myself in her place for a moment. I recalled some of the medical heroes in Walker’s life:

The family physician who listened to “the Speech” very carefully and said, “Frankly, I’m baffled.” I wanted to kiss him.

The public school evaluators who listened patiently to Ellen and me and believing us, tuitioned Walker out to a terrific school.

The speech therapist who smiled and listened encouragingly to me after Walker had bitten her hard on the arm.

The emergency room nurse who saw clearly the pain on my face when Walker was having a seizure, touched my hand, and listened to me babble on and on about him.

So I smiled. I asked her to sit down. I turned off my computer and went over her paper with her.I didn’t change her grade, but we were both better off afterward. She had learned a little more about English sentences and went away feeling just a tiny bit better about her own possibilities in this strange country. I had learned about how she thinks and in what ways her intelligence can come through on the page.

And, most importantly, I was reminded of something else, something that helps me every day of my own professional life, something I will doubtless have to re-learn again and again as time goes by. I had learned, from the shining example of people like all of you here this morning, a lesson in the spectacular art of heeding the student.

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