Winning the War Within
updated 03/23/1992 AT 01:00 AM EST
•originally published 03/23/1992 AT 01:00 AM EST
But the diagnosis, it turned out, was wrong. After the operation, through a lingering haze of anesthesia, Barron, 52, heard her surgeon's voice. "There is no malignancy," he said. "It's an infection—you're going to be fine."
Sitting with her son, Sean, 30, in the comfortably cluttered Manhattan apartment she shares with her daughter, Megan, 28, and husband, Ron, 54, who works with her managing singer Maureen McGovern, Barron relates this story with remarkable calm. Then suddenly, just for a moment, she fights back tears. "The first thing I saw after the operation," she says, "was Sean's face. His eyes were filled with pain, and love, and all the things they never used to be filled with. They were always empty. And I thought, 'Who would have predicted?' "
In the Barron family, it seems, predictions—particularly by experts—should always be viewed with skepticism. There's a Boy in Here, Judy and Sean's just published account of Sean's near miraculous recovery from childhood autism, proves that point beyond doubt.
Sean Barron was born suffering from autism, a disorder characterized by psychiatrist Leo Kanner, who named it in 1943, as "children's inability from the beginning of life to relate themselves to people and situations in an ordinary way, and the anxiously obsessive desire for the preservation of sameness." Though autism varies in intensity—some children are retarded and never speak, while others have primitive social skills but can function in mainstream schools—significant recovery is extremely rare.
By the time Sean was a year old, he was impossible to control, squirmed away angrily when touched and would not make eye contact. "I remember thinking, 'Even our dog looks me in the eye,' " says Judy. Sean was 4 when a neurological pediatrician told his parents he was autistic, 5 when the same doctor brought his diagnosis into chilling focus. He said, " 'You'll wish your son had been born blind, deaf or retarded, because autism is the worst,' " writes Judy. " 'You have to face it—you may very well have to institutionalize him.' "
Refusing to accept that sentence, Ron and Judy kept Sean at home with them in Boardman, Ohio (near Youngstown), where Ron was a high school English teacher. They taught him what they could and sent him to struggle through public school. Then they watched in proud awe as Sean, then 13, began the slow blossoming he says felt like "waking up from an emotional coma." Today Sean is college-educated, works full-time as a rehabilitation aide in an Austintown, Ohio, nursing home and is coauthor with his mother of the book that is already causing a stir among autism professionals.
"The book is remarkable," says Dr. Ruth Sullivan, director of the Autism Services Center in Huntington, W.Va., and mother of Joseph Sullivan, one of the models for the Dustin Hoffman character in Rain Man. "Sean is very high-functioning. I would say less than 2 percent of autistics ever function at that level, and I've never run across one who could speak so clearly about his feelings. But in reading the book, I didn't think he sounded entirely autistic as he grew older."
Judy has heard that response before—from professionals who have never met Sean. "How can you say the disease might not be applicable to him just because he doesn't fit the usual ending?" she says. "He had all the symptoms for years and years."
Those symptoms began the moment he was born. A robust 8-lb. 13-oz. baby, Sean cried almost constantly for the first four months of his life. "The crying sounded terrified, and it didn't alter when I picked him up," says Judy. "I remember thinking there was something odd about it, but I denied it for a long time."
As the months passed, Sean's oddness grew more pronounced. "He would prop himself up on the carpet and pick at it for an hour at a time. I thought, 'This is so weird. What is he doing?' " Judy says. Many years later she found out. "It's one of the first things I remember," writes Sean in There's a Boy in Here. "I had to keep picking at it to be sure that the whole rug was the same, all of it."
His need for consistency was expressed in other repetitive acts as well: flipping light switches; throwing crayons down radiators. "I thought he didn't like me," says Judy, whose pediatrician kept assuring her Sean was simply developing at his own pace.
What Sean remembers from his early years is terror, pure and simple. "You know how children's parents give them a sense of security?" he says. "I for some reason never had that. I always felt anxious, almost like there was a force closing in on me that I couldn't define. And the only way to keep it at bay was to keep moving and doing repetitive things, which made me feel more in control. People were frightening to me because I didn't have control over them."
Judy sensed his fear and tried her best to fathom it. "I used to think, 'We all take so much for granted,' " she says. " 'We're born on a spinning planet, but we aren't afraid we'll be spurted off into the darkness of space someday. Maybe autistic people are born without that comfort—maybe they know, somehow, about the precariousness of life.' "
The books she and Ron read after Sean's condition was diagnosed in 1965 offered other theories about autism—theories that didn't strike the Barrons as much more plausible than Judy's. The prevailing wisdom at the time was that "refrigerator parents," mothers in particular, communicated an unconscious ambivalence that forced the children to withdraw. (Today, autism is almost universally believed to be biological in origin.)
"We never believed it was the mother's fault," says Ron. Worn ragged trying to control Sean's behavior, the Barrons consulted a number of professionals who prescribed behavior modification or drugs like Ritalin, usually prescribed for hyperactivity, neither of which seemed to help Sean in the least. Eventually, the Barrons decided to go it alone. There were fleeting moments—like the day 5-year-old Sean heard Judy crying and looked her in the eye, with seeming concern, for the first time—that gave them hope. "We'd say, 'He's in there, and we have to get to him,' " says Ron.
Spending time with Megan, who was born when Sean was nearly 2 and who adored him, seemed to help. "I was taught language and a lot of other things by my younger sibling," says Sean, whose first words, at 2, had been numbers his parents finally realized were the time of day—read off the clock to the second. By 5, he spoke in halting sentences, though he could not engage in meaningful conversation and rarely followed directions. Crossing their fingers, his parents sent him to kindergarten.
"He was out of control at home," says Judy. "I couldn't imagine him functioning in school." But function he did, passing to the next grade year after year and even doing well in such concrete subjects as math and spelling. "The structure of a school day was something I desperately needed," says Sean.
He made no friends, though, and his behavior at home remained bizarre and infuriating. There was always a new obsession, like running up to cars in the street and staring in at their speedometer needles. He went through one phase of asking visitors to his house if they listened to various radio and TV stations, whose call letters he had memorized. And he had countless arbitrary rules: For example, waitresses in restaurants (which the family patronized infrequently) couldn't serve water, or he would scream.
By the time Sean was 10, Judy—who had her hands full with a new elementary school teaching job—felt she could no longer cope. To his distress, Sean was sent to a residential treatment center an hour or so from Boardman. "I thought my parents hated me and this was their way of proving it," he says. He hated the school, his family missed him, and he returned home after nine months, seemingly unchanged.
Three years later, almost imperceptibly, the change began. "He started saying things to me like, 'I am not that kind of person. I am a nice person,' " remembers Judy. "I thought, 'What? Is this something he read, or a new repetition?' I slowly realized he was starting to see himself differently."
For Sean, change was a Sisyphean task. "I started having conversations with myself, like an inner person speaking to an outer person," he says. "I was trying to control my behavior. It didn't work, except maybe for a short time, and then the compulsions would take over again. It was the scariest feeling, like the flames of hell rising up again, consuming."
After years of being teased or ignored in school, he was growing more aware of the gulf that separated him from most of humanity and making valiant attempts to bridge it. "I decided I needed a sense of humor," he says. "It came from out of the blue—it was like, 'Mom, when you go to the store, could you pick up a dozen eggs, milk and a sense of humor for me?' " He watched Gilligan's Island religiously, memorizing and later repeating choice bits of dialogue, and he grew furious when his peers weren't amused. "I remember thinking, 'He'll never have a sense of humor,' " says Judy. " 'Whatever humor is, it's based on things he doesn't have.' "
Both Judy and Sean stress that his awakening was gradual and marked by setbacks. But there was a moment, not long after Ron and Judy had begun working for their old friend Maureen McGovern and had moved the family to Los Angeles, when Sean broke through as he never had before. A movie called Son-Rise, about an autistic boy and his family, was on television, and the Barrons gathered to watch it. Afterward, 17-year-old Sean turned to his mother. "I'm autistic too, aren't I?" he asked.
"That was the first time in my life that I was able to put a name to what I had," says Sean, who had been told about his condition before but had not comprehended. "For all those years, I had just felt that I was a bad, unlovable person." That night Sean and Judy talked for hours—about autism, about Sean's childhood. "It was the first real human conversation of our lives," says Judy. "I fell unable to move, or we'd break the spell."
Sean improved impressively after that. He made his first friends, dated several girls and graduated from Youngstown State University back in Ohio, where he majored in early childhood education. He was often discouraged about the things he had missed during his dark years. "I had no way of deciphering what is appropriate for someone of my age to know," he says. Adds Judy: "He got as furious with himself for not knowing how a car engine worked as he did at his ignorance of the word for 'baby dog.' "
Ron, Judy and Megan (now a photographer) moved to Manhattan in 1983, but Sean decided to make Ohio his home. He now lives in a one-bedroom apartment in Boardman, not far from his nursing-home job, which he has held for four years and which he enjoys. "I've built up a very positive life for myself," he says.
His parents couldn't be prouder. "He's come so far, especially since writing the book, which helped him get rid of a lot of the anger he felt toward himself," says Judy. "He's an incredible personality now: kind, thoughtful, funny, all those things you want your son to be." She hopes his story will give other autistic parents not false hope, but reason to persevere. "It shows that you can't set limits on the human spirit," she says.
Some remnants of Sean's autism do linger. Tall, with a sweet, shy smile and a slight air of adolescent unease, he speaks deliberately and somewhat formally. "I used to want to hide my ignorance," he says. "I guess to some degree I'm still like that."
It doesn't seem likely to hold him back. "People say to me all the time, 'Wow, I would never have known you were autistic if you didn't tell me,' " he says. "I take that as a compliment."