A Father Tells the Story

          May 1998

I’m sitting in my living room on a Saturday afternoon reading a book and trying to ignore the excited, happy shouting of Walker, my 12-year-old autistic son. He is in the back room of the house yelling “No Water Tower today!” which is Walkerspeak for “Let’s get out and run to Water Tower Place now, Dad!” When the shouting  gets too loud—meaning it can literally be heard two doors down—I finally stomp back there to tell him to quiet down.

Walker is busy. He is sitting and bouncing high and wildly on a large inflated ball. His tape player blares Clint Black singing “No Time Kill” (an ironic lyric if ever there was one) for the 20th time today. A CD-ROM interactive children’s book plays on the Macintosh, and a book with actual paper pages is open on the desk next to it. Three empty Diet sprites are lined up neatly on a table, and fourth is in his hand. I knew about the first three, not the one threatening to hoot its contents all over the room. And his giggling and looking into my eyes as if to say: “Aha! Gotcha!”

As I try to tell him for the third time that it’s too late in the day for a long run (Water Tower Place is five miles away), it occurs to me that this little scene holds all the pathos and hope built into Walker’s young life.

Walker is a “low-functioning” autistic, the opposite of the popular image of the autistic portrayed by Dustin Hoffman in the film Rain Man. While that character is stiff and cold, my son is loose limbed, emotional, and loving. While Rain Man performs the mathematical stunts of the rare autistic savant, Walker’s near-zero mathematical repertoire will never grip a Hollywood production company. While Rain Man is rather competent in ordinary ways, Walker—though intelligent—still cannot tie his own shoes or talk regularly in complete sentences.

Looked at one way, all the doom of low-functioning autism is evident on this fading January afternoon: the endless, obsessive repetition of actions and sounds; the poor, highly inadequate speech at a late stage of development; and the reliance on and odd use of age-inappropriate things.

Money quote: “While it seems like a Ninja trick, it turns out that science backs up the idea that the best way to get people to like and trust you is to listen to them.”

Looked at another way, his parents’ way, there is much to signal hope: the close relationship with his dad; the needling sense of humor; the urge for companionship; the active mind that is not content with one thing but needs many plates spinning simultaneously; the and the sheer physical energy and enthusiasm for life.

There is one more component of the scene: me, the dad—tired, irritated, but appreciative of his joke nonetheless. I’m anxiously aware of all the help and hindrance that I can be to him.

In the film The Miracle Worker, the moment when the parents realize that little Helen Keller is blind and deaf is charged with Gothic horror, a life-shattering event When a lantern is waved above her face and the parents know she is blind, the mother screams, and cinematographer has a grand time playing with menacing shadows and eerily lighted faces.

Before Walker came into our lives, this was my idea of the way it would be to discover a catastrophic problem in a child: It would hit like a sudden shock, a psychic electrocution. This is indeed how it hits many parents. Worried about their two- or three- year old’s rigidity or inability to speak or aversion to being hugged, they take their child to a psychologist or neurologist, who lowers the boom. And the diagnosis is devastating.

Autism is a condition that afflicts two in every 1,000 children. Doctors talk about a “spectrum” of autistic disorders because their wide variety makes up a large family of different problems. The symptoms include lack of awareness of people mental retardation, ritualistic behavior, poor communication skills, inability to play with toys normally, and failure to bond normally with family members. An autistic child can have combination or degree of these symptoms; for instance, a child can have high intelligence yet still be unreachable.

The most horrible symptom for parents is the best-known one: the tendency of even newborn babies to stiffen when parents hug them. This gave rise to the term “refrigerator mothers,” mad infamous by Bruno Bettelheim, who blamed the mother for the child’s condition. Now autism is known to be a neurological and genetically based condition, not an environmentally produced one. Bettelheim’s idea, coupled with the public’s impression of it as spooky X-Files sort of condition like alien possession, helped set back autism as a field for productive research for many years.

Though there is no known cure for autism, a few autistics grow up to highly successful, productive people. The brilliant Temple Grandin, for example, is a scientist and best –selling author. Her book Thinking in Pictures offers a revealing look at how she thinks and sees the world. Donna Williams’s memoir, Nobody Nowhere, has been a great help to parents trying to find out how the world looks to their autistic children.

Most autistics, of course, never achieve this sort of success. Few autistic adults have families or children; few are self-supporting; few can handle more than a simple job.

Because there is no known cure for autism, the diagnosis is terrifying to parents. But in our case, were slow to think Walker even had a problem. Because he was precocious in his reading and numbers, emotionally close to us and extremely fond of hugs, fun-loving, happy, physically agile, and possessed of a good sense of humor, we weren’t too concerned about his lack of speech. He started saying words at a normal age, then later stopped.

But by the time he was three we were concerned enough about his delayed speech, his failure to point to things, and his lack of interest in toys to take him to a highly recommended pediatric neurologist. After examining him for ten minutes, he told Ellen, “I hold out no hope for this child.” The doctor’s utter lack of interest in what we regarded as the rich complexity in Walker’s behavior, and his casual misinterpretations of the ten minutes of behavior

he saw, kept us from taking his prognosis very seriously.

But form that point, worry began to grow into simmering anxiety.

Walker is jealous. This wintry Saturday afternoon his mom and his younger brother, Davy, are out at a birthday party, and Walker is stuck alone in the house with a father whose fantasy is to read three pages without being interrupted. I have just finished Shelby Foote’s three-volume The Civil War, which took me only slightly less time than the actual Civil War took the North and South, and I’m on to Foote’s novel Shiloh, which I dream of finishing before the turn of the century. Feeling guilty, I say to Walker, “Let’s watch a video.”

“No Willows today!” he explodes in response and dashes into the living room, sorts through our embarrassingly huge collection of children’s videos, and plucks out Disney’s The Wind in the Willows. I sigh in relief. Willows one I actually enjoy seeing again and again. Others, especially musical videos, like Rock Music with the Muppets, Disney’s Sing Along series, and The Brave Little Toaster, feel jackhammered permanently into my head.

But Wind in the Willows is a clever version of the classic story, and I think it mirrors my own situation. Here are Mr. Badger, Mr. Rat, and Mr. Mole—unassuming, average animals trying to live a safe, average life. Their world is thrown into disarray by their extraordinary friend, Mr. Toad, who wants to break out into a life of adventure but is hobbled by his obsessions, his “manias,” and continually gets into trouble. I identify most strongly with Mr. Badger, the old father figure who tries vainly to control the “completely mad” Mr. Toad. Ellen and I have repeated a line of the narrator before every long car trip with Walker: “What new and greater perils lay ahead, no one could say. But with Toad already getting out of hand, anything could happen.”

Today Walker is enjoying Mr. Toad’s adventures, and I am doing my usual running commentary on the action, sometimes reading the closed-captioning (which is always on in our house in hopes of promoting reading), and asking Walker questions that he never really answers. I know he loves and understands the characters and plot, for I have seen him laugh at the jokes, get excited at moments of tension, and even act out scenes. He particularly loves a speech by a blustery, fast-talking cross-examining prosecutor and has tried to imitate it.

This time, however, Walker burns out before the end of the tape. “Outside!” he suddenly yells and grins at me as only he can, his mouth a couple of inches from mine. “Outside! Shoes and socks!”

I know, I think I’ve known for hours, that Shelby Foote will have to wait.

The disparity between what we thought about Walker and what experts thought reached its peak when we started to cast around for help in getting him ready for preschool. When we took Walker at age four for an extensive psychological evaluation, we found the questioners weren’t interested in any of his habits or personality traits except for the ones they could call autistic. Everything else—his intelligence (they tested his IQ at 130), his physical agility, his love dancing, his clear desire to impress us, his love of being physically close—was of no interest to them. In any case, once he had been labeled autistic, most of these traits would be reinterpreted by teachers and evaluators as stemming from his condition, so broad is the scope of its manifestations.

Not long after this, Ellen took Walker to a screening for admission to the Chicago Public Schools. When Ellen got to the door of the school for the meeting, Walker went wild with fright, biting and screaming. As Ellen tried to speak to a psychologist, a speech evaluator walked by and said, “This one’s retarded; let’s see what else is wrong with him.” To us it seemed the doctors, psychologists, and teachers we met were more interested in determining what Walker couldn’t do and in establishing limits. But we assumed that if we set out to teach him something with the idea that a limiting wall would soon be hit, we wouldn’t have the heart to keep trying. If you toss a ball to an autistic kid and he doesn’t throw it back, how many times will you try it again? At what point do you check off “Can’t play ball” on the list of limitations?

Our policy was to throw the ball until we couldn’t stand it any longer, take a rest, and then try again. Sometimes this worked; sometimes it didn’t. But even when it didn’t Walker usually let us know he loved us for trying.

One morning I sat with him at the dining room table trying, with rising impatience, to teach addition and subtraction using a pile of pennies. As on the several previous morning, he didn’t show much understanding, but this day he whispered distinctly, “This is wonderful.” His little sentence, to say the least, was powerful motivator for me.

But we continued having difficulty matching our assumptions with those of the professionals. Since the most glaring problem Walker—and most autistic children—face is poor communication skills, the most important professional we commonly dealt with was the speech therapist. At the speech clinic a well-regarded hospital, I found myself sitting one day with the director of the program looking through a one-way mirror. I was there because Ellen wanted my opinion on how Walker’s speech therapy sessions were going. She was unhappy because the speech therapist (we would eventually have four in all) had done nothing in the two sessions she had seen but tell Walker to put various block into various holes in a toy mailbox,

So as I watched Walker take directions from the teacher and again do a bang-job with the mailbox, I pointed out to the friendly director, a gentle-voiced and kindly young woman, that since Walker could already read and spell more than 100 words, and had clearly mastered mailbox, maybe this constant repetitions was not very helpful?

“No, Mr. Hughes. This teaches him cooperation. He must learn to cooperate and follow directions before he learns to read.”

“But this is absurd!” I said, my blood beginning to boil. “Walker’s probably confused about why he must endlessly do this. It must seem like some kind of punishment to him!”

“Now, there, Mr. Hughes,” she purred quietly. “We know what we are doing. You should enroll Walker in our day program here at the hospital. You shouldn’t try to teach him. That’s our job. Your job is just to love him.”

Fortunately I’ve forgotten the specifics of where I took this conversation. But I do remember that the angrier and louder my voice became, the quieter, more patronizing, and more musically soothing hers did, and I blew the three weeks of friendly relations Ellen had managed to establish.

I’m sure she thought I was in denial about my son’s condition. But it seemed to Ellen and me that while a therapist could pronounce “Autism is incurable” and “I hold out no hope for this child,” a parent had no such luxury. A parent had to fight. We decided to try to reach him ourselves.

Walker has to get out of the house. It’s getting dark and the long run to Water Tower is out of the question, but a quick ride on the L to our new hangout, a downtown McDonald’s, is feasible.

Out of the house, down the stairs, and we’re off, Walker taking the lead, Dad a length behind. It’s a one-block run to the L station, and Walker makes the most of it. He is thrilled: thrilled to be running, thrilled to be going into the Loop, thrilled to see people on the street, And I, too, am very pleased. As a pair, we are most in sync when we are outside, moving and looking.

Walker is a notable pedestrian. He is a tall, vigorous, good-looking boy who is smiling, skipping, running, and shouting, “No Donald’s today!” Though he moves up and down almost as much as he goes forward, manages to travel fast. His progress, however, is interrupted by sudden, abrupt stops, even reversals in direction that cause me to sail past him before I’ve noticed what has happened. He can skip-run like this for hours, and I delight in bragging to anyone whose eyes don’t glaze over that a favorite route of ours is to go from our house in Lakeview down to Lincoln Park Zoo, run the length of the zoo, then out to the lake and south along the beach to Water Tower on North Michigan Avenue. (Then I get tired, so we take the L home.) He can do this marathon, go back home, and gleefully bounce on his trampoline for another hour.

Walker knows that lakefront route well. His favorite book for years was Above Chicago, the beautiful collection of aerial photographs of the city. Each night he would pore over the photographs of the lakefront, then go sleep with book under his pillow.

Today we are traveling along the one-block route at a good clip when Walker notices a pretty young woman on the sidewalk approaching us and talking on a cellular phone. Immediately his fingers go in his ears. When she is just a few feet away, he sings, “Daylight come and me wan’ go home!” jumps high, and comes down with his feet together precisely on a line on the sidewalk. The woman looks startled, her eyes widen, and as she passes she gives us a wide berth.

Then I brace myself, for now the tow of us, Mr. Toad and Mr. Badger, will ride the L.

“Home schooling,” Ellen and I would always say to anyone who asked, “is not our cup of tea.”

I love school—that is, “real” institutional school. All my childhood, pleasing the teacher was my constant study and staying in school as long as I could was my life’s goal. After getting a Ph.D. in English literature, I got a college teaching job that I hope to hold for years.

Ellen, too, recalls being such a good student that the teachers never even knew she was there. So as home schoolers we—and I more than Ellen—felt more like outlaws than many other parents would. After all, home schooling is legal in Illinois and increasingly popular.

We took a deep breath and threw ourselves into it. Home schooling, for us, meant getting Walker out of the home as much as possible. Out he went to dance classes, occupational therapy sessions, speech classes, swimming classes, reading tutorials. Out he went to museums and parks and malls while his parents chattered at him about everything they saw. Since as a toddler he never expressed any desire for toys, for a time I would put him in a cart and wheel him daily down the aisles of Toys ‘R’ Us, pointing out every bright plastic gizmo I thought should appeal to him. Since he turned away from looking at animals when we went to the zoo, we repeatedly pushed him in a stroller and pointed at every animal there. Eventually he stared and smiled at his favorites.

We even taught him. Ellen or I sat down each morning with him to do a lesson—math or reading or music or science—though always with mixed results.

Probably many more parents would do this if they could. We were lucky, for I was able to arrange my classes to be at night while Ellen, a freelance writer, worked in the mornings. Though it created a permanent black hole of debt, we tried in every way we could to expose him to life in active, engaged ways that he would never find in school.

Still, the pressure we felt was immense, since evaluators had told us that it was our duty to enroll Walker in special education. We knew that if we put Walker in special ed and he didn’t improve, they would blame his failure on his incurable condition. But if we schooled him and didn’t improve, they would blame his failure on us.

Wriggling out of this maddening logic was impossible and led to unpleasant confrontations.

Walker hops onto the train eagerly, but I am wary and a little tense, as I always am when riding with him.

My fantasy trip goes like this: We are sitting side by side and he is screaming and occasionally putting his elbow on the shoulder of the big sociopath sitting in front us. Jack Palance repeatedly turns around and gives me a look that means You better stop your kid from touching me. I look at him benignly, for I know that he is just a poor unimaginative fellow. He doesn’t understand that this is where an elbow needs to go when the index finger of each hand is in each ear and your face is plastered against the window to catch the full blur of the buildings going by.

After three long minutes of this, the big guy turns around and hisses, “Take your weird kid off my back or else!” All the passengers hold their breath, for they have been staring and waiting for the coming showdown.

What will the nice father do?

I look at him and say in the quiet, even tones of a man who is never at a loss for words, “My son has a disability, and he is doing his best. But answer me this, sir: Can you look me in the eye and say that you are doing your best?”

His thin lip quivers. His cheeks blush with shame. He stammers, “I…I see what you mean. I’m very sorry.” The passengers raise their fists and cheer.

Unfortunately, the guy in front of us today is, as usual, pleasant-looking, visibly irritated, but suffering silently. The around are tolerant but curious and stare as if they will face a quiz on what they saw at the end of the ride. Things never reach the point of verbal clash and triumph but rather stew in my head and cloud my face. I try not to hate them all, but deep down I know it: On these occasions, Jack Palance is me.

During the home schooling period,e were continually reminded boy others of how wrong we were. On one notable day when Walker was seven, speech therapist number three, who had been teaching him for two years, broke down and lectured me on our home schooling insanity. Walker had just bitten her (no skin broken) and only a home schooled autistic child would do such a thing. She emerged from her office shocked, tugging him by the hand.

“Oh, I’m sorry,” I said. (Apologizing for his behavior to everybody, even paid professionals, had become a reflex.) “He must be very frustrated. It’s what he does when he’s trying to tell you something.” I spoke cheerily, trying to mollify her. It was hard to talk, though, because during this exchange Walker was shouting words I couldn’t understand, grabbing at my mouth and clutching my coat and jumping up and down. He clearly had his own version of the biting, story, though the speech teacher wasn’t catching on.

“What are you trying to say, honey?” I asked him.

She would have none of this.

“He needs structure,” she loudly declared. “He needs discipline! He needs to be in special ed!”

I didn’t think it was a good time to tell her that the biting was far worse than she knew. Thought he seldom bit people, the plaster corners of the walls of the walls in our house and edges of dining room table resembled long sets of piano keys from his tooth marks. We were used to standing by helplessly, watching him scream through his teeth during angry performances. We saw this, in our panicky way, as a positive thing, another sign our boy wanted to communicate. “Good!” we’d nervously say to each other. “He’s not a zombie locked in his own world. He’s throwing himself against the wall of his private prison. He’s trying to reach us!” His outbursts of desperation, we told ourselves again and again, were signals that the boy we loved was still there, with us, insisting on his presence in the room.

This wasn’t much, of course, but it was something. It was more than the perpetual line, presented as a medical insight, precious to therapists and doctors: “Oh, that’s another thing autistics do.”

The speech therapist had finally decided that were nuts. We generously returned the opinion.

It was time for a change.

We disembark at State and Randolph, a place I have to see through Walker’s eyes as a colorful world of movement, loud noises, and vivid faces.

Walker is hungry. On State Street he shouts, “Fries!” which means we won’t be doing the usual tour of the elevators and escalators of Marshall Field’s but will go directly to McDonald’s.

It’s January and Christmas decorations are down, but a street corner guitarist is playing our song, “Winter Wonderland.” Walker and I had rehearsed this over and over and sung it together at our family Christmas party in December. So he stands close to the performer, and because he loves the song, he puts his fingers in his ears.

Why? Why are fingers in the ears the response to anything exciting, not just sounds but sights: a puppy, another kid his age, a steam locomotive? Ellen and I once went through a period of trying to train him to stop doing it, until we realized that for all we knew, he had to, like a person with a headache pressing fingers against the forehead. Maybe it’s the only way he can cope with the multitude of stimuli the world bombards him with. AS with so many aspects of his life, finding out why he does things is perpetual detective work—exhausting, frustrating, but fascinating, too.

Walker skips, I jog, around Field’s over to the McDonald’s on Wabash. This is a big opera house of a place, a vast stage for Walker with two floors, a large audience, and Muzak, a place where a boy can make a long, impressive entrance and exit. I think we both like it because we see such a wide cross section of the city there, people who don’t seem too shocked at a little zany boy behavior. After devouring three large orders of fries and lining up the empty red boxes in a neat row, Walker shouts, “Train!” So we head back the L and the ride home.

A graph of our hopes for Walker during the home schooling years would show a low-grade optimism punctuated by deep, horrific dips. One dip occurred just after the Bitten Speech Teacher Episode. We were fed up with doctors, therapists, and evaluators and referred to all of them as the Developmental Police—a narrow, rigid bunch who saw us as the child-rearing equivalent of bomb-throwing anarchists. But Walker had to have teachers, real ones, not just Mom and Dad. So with heavy hearts and lowered expectations, we called yet another recommended speech therapist, Walker’s fourth.

When Maureen Sweeney walked through our door for the first time on June 23, 1993, we knew our lives had just taken a quantum shift forward. If there were a Disney cartoon video of this scene, the storm clouds would lift, the sun would break through, and the birds would start chirping. Here was someone—the first professional—to really listen to us and tell us things that made sense. When we told our tale of educational woe, she said she was very familiar with it; when we explained how different Walker was, she listened with interest.

We talked for an hour while Walker watched quietly from the balcony over the living room with his fingers in his ears. Maureen then looked up and said, “Hi, Walker. Come over here.” He sat down on a chair next to her, leaning toward her. “I know other boys and girls like you,” she told him. “And I can help you.” Never had we seen Walker sit so still for anybody or pay so much attention. Here was a teacher acting like a friend and holding out real hope.

Maureen proceeded, in twice-a-week sessions at our house, to play hide-and-seek with him, shout and laugh with him, chase him down the hall, roll him up in a rug, sit on him and hug him, as she said, “to squeeze the words out.” She established trust and friendship before expecting him to sit at a table and do lessons. She was bitten—over and over—had her hair pulled, and was treated to Walker’s wildest stuff. She remained unfazed; could always see the boy inside. And ever since those days, she has based her teaching of Walker on who he is, not on presumptions based on a label.

But Maureen couldn’t clone herself to be with him all day, and this was what he needed. As time went by, and Walker saw his brother, Davy, two years younger, go off to school, too. We had another evaluation with the Chicago Public Schools, this one the sunny inverse of the first one. This time we were fortunate enough to be assigned a different team of evaluators. They were open-minded and reasonable. They praised our home schooling—even our parenting!—and sent Walker to the special needs school of our dreams, PACTT Learning Center, in Rogers Park. At PACTT (Parents Allied with Children and Teachers for Tomorrow), where he gets one-on-one attention all day, he is treated with respect, gentleness, and a sense of humor. For nearly two years now, Walker has jumped out of bed in the morning shouting “PACTT School!”

Hope for Walker has also emerged from a completely different quarter—medical science. We’ve recently found a new pediatric neurologist, Dr. Michael Chez at Lake Forest Hospital, who is doing research based on the discover that certain conditions in the autistic spectrum seem to be caused by malfunctions of the autoimmune system. Antibodies invade the brain and cause neurological problems that can be treated, in some cases with dramatic success. This is the fist time any medical hope at all has been held out for Walker.

Dr. Chez’s research is an example of some of the exciting new work being supported by a relatively new parents’ group called CAN, Cure Autism Now. The very name of this group shows how autism’s “incurable” image is changing. This image—that there is something innately mysterious about autism that is uniquely impenetrable to research—has stood in the way of real progress. As CAN points out, “Autism is more common than Down syndrome, multiple sclerosis, or cystic fibrosis, and yet autism research still receives less than five percent of the funding of these other diseases.” Next to the National Institutes of Health, CAN funds more research into autism than any other organization.

Walker is making progress. Now in the middle of his treatment program, he talks more, sleeps better, uses complete sentences from time to time, is able to listen better, and sings more songs aloud.  He not only repeats what we say to him—his usual practice—but to our delight, on occasion responds with a word we didn’t use, one we didn’t know he knew.

All in all, the current graph of our hopes for Walker would show a recent sharp, but shaky, upward turn.

Walker is restless. When we get off the L in our neighborhood, I want to turn toward our house—it’s cold and dark, I’m tired, and Ellen and Davy are probably home by now—but he wants to go to the small grocery store half a block in the opposite direction. The place is an old enemy of mine, a quiet little theater  where Walker has staged some of his wildest scenes.

As we walk in the door, Walker shouts “Oh, oh, oh!” and runs to the back of the store. I think nervously, With Toad already getting out of hand, anything could happen. I race-walk over to him and whisper sternly (a special disciplinary skill of mine of mine), “Don’t shout!”

“No shouting today!” he yells, grinning at the customers who have spun around to stare.

I grab some ice cream and a frozen pizza and steer him quickly to the checkout counter, where of course there is a line. As we wait, he yells, “Shout!” and “No shouting today!” over and over while I sternly whisper and avoid eye contact with everybody.

Fumbling with my wallet at the register, I’m surprised to notice Walker—fingers in his ears, elbows on counter—smiling at the cashier, a young Hispanic man. He and nearby customers are good-naturedly laughing and smiling at Walker, truly enjoying the show. “How are you, my man?” the cashier says to him and pats him on the head.

Walker grins and shouts: “No relax today!”

Relax? I think. I’ve never heard him use that word before. No relax today?

Sometimes Mr. Badger is the last to get the joke, and sometimes he forgets: Anything could happen.

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