There's a Boy In Here: A Mother and Her Son Tell the Story of His Emergence from Autism
by Judy Barron and Sean Barron
Simon & Schuster, 264 pages, $20
Of all the many states of mind, disorders, and aberrations of man, autism is certainly among the most mysterious. Autistic people give one an uncanny feeling. They provide a vivid reminder that no person can ever fully fathom the mystery of another. Autistic people spend a good part of their energy keeping the world at bay, holding off intimacy in any form. Eye contact is rare. Those who speak usually do so in a monotone. They appear to be unaware of the world around them and either ignore or reject efforts to involve them socially. They tend to shrink from praise. Although they often have exceptionally acute hearing, many autistic children act as if they are deaf.
People meeting an autistic person almost invariably feel that within the strange creature they see there is a hidden person who is intelligent, who can recognize in another what he conceals in himself. I know of many autistic people who are not only selectively aware of their surroundings, but who show evidence of prescience that is unnerving. And in many cases there are islands of self-awareness that sharply illustrate the mystery of this condition.
When my autistic daughter Abby was three years old she grabbed my finger one day and, whining “cackee, cackee” in a high, distorted voice, pulled me along the hall toward the pantry. Halfway down the hall she stopped. She turned and looked me in the eyes, for perhaps the first time in her life, and said, in a normal tone of voice, “I used to say ‘cracker'.” Abby is now thirty-six. Nothing like that ever happened again. I have sometimes asked myself since whether it really could have happened. But it did. I can offer no interpretation of this event, nor even speculate on how or why it happened, nor do I believe that anyone else can explain this bizarre and mysterious incident.
Most people who write and talk about autism are reluctant simply to describe the odd behavior and mysterious qualities of autistic people. They feel they must offer an interpretation. Judy Barron, who with her son Sean Barron has written a book about Sean's autism, is someone who can present odd behavior without being compelled to explain it. Her account of the first twenty-five years of Sean's life is rich in detail and admirably free from speculation. The explanation—or I should say “explanation”—is left to Sean, who gives us reasons for his odd behavior, reasons that explain little. While Sean's account of events in his life from inside autism are fascinating, in the end the essential mystery of his condition remains untouched. This is especially tantalizing because Sean is one of the minority of autistic people who have emerged from the most disabling aspects of the disorder into a refined self-awareness and the capacity to love and trust other people.
Judy Barron's chronicle of Sean's life, his autism, and its impact on the entire family is based on journals she kept for years and describes as “a written account of a life we lived but never understood.” This is a record of a child, odd and difficult from birth, in the grip of senseless obsessions, controlling the family with rigid rules and prohibitions, tearing through the house as fast and destructive as a tornado, grunting instead of talking, unresponsive to his parents' loving concern, their urging, coaxing, their vain attempts at discipline, their anger and spanking. Although they make no claims to be heroes, it is also a record of the ceaseless and heroic efforts of Judy and Ron Barron on behalf of their son. The jacket copy asserts that “his family's indomitable and courageous resolve finally released him.” There is no direct evidence to support this. It may be that Sean is part of the one-third of autistic people who overcome the most disabling symptoms of their disorder—an improvement that cannot be attributed to any particular treatment. What counts is that his parents were there all along without any guarantee that their actions would ultimately be helpful, and they provided an environment in which Sean could flourish as he emerged from his autistic prison.
The parents of autistic children in the 1960s faced a world that was largely ignorant and uncaring. When Judy Barron described Sean's behavior to her mother the response was, “But all kids do things like that.” “I was making her uncomfortable,” Judy Barron writes. “I'd begun to feel as if I were building up a case . . . against my own child, an excuse . . . because I couldn't control him. It became clear that although I thought there was something wrong with Sean, my mother thought there was something wrong with me.”
That message followed the Barrons as they sought help from almost a score of professionals including their pediatrician, three psychologists, a speech therapist, a neurologist, and a nutritional therapist. From a psychologist: “How old was Sean when you had your second child?” “Just under two.” “You see, [that's] the worst age for the older child.” A neurological pediatrician: “ ‘Now, mother,' he began, ‘tell me about your son.' ‘Excuse me, but I'm not your mother-my name is Judy.' ‘I see we're having trouble accepting the role of motherhood.' “ From a psychiatrist “who was trying to ferret out what we had done to Sean and why. She knew we were the source of his problems, she just didn't know precisely how.” At this point, when Sean was twelve, the Barrons decided to put an end to this abuse by professionals and to rely on their own “love, rage, frustration, patience, inventiveness, violence, ignorance, and humor.” They also relied on each other for help and support that was always there, and on the belief that their son, flawed and difficult as he was, was a person worth making every effort to save, even when this effort became the center of their lives.
By the mid-seventies it was becoming established that autism is a disorder with a physiological basis. Today, although the jargon has proliferated and professionals still use it to assert their superiority, parents are no longer subjected to the cruel abuse that was almost invariably their lot in the days between the first identification of the disorder in the early forties through the late seventies.
Judy Barron writes with merciless honesty of the frustration and rage Sean's behavior called forth, and of the violence she and her husband were driven to. She also describes endless hours of patient attempts to train, to reason with, to teach, to reorient a child who sometimes seemed to her to have come from another planet. I wouldn't know where to look for an example of faithfulness more impressive than this, or a dedication to a task more openly and modestly undertaken. The Barrons were luckier than most parents of autistic children. Somewhere along the line Sean learned to talk. He went through normal schools with above-average grades, even while his behavior at home remained violent and tyrannical. He graduated from college, drives a car, goes out with girls, has plans to go to graduate school. It was his desire to help other families that made him decide at age twenty-five to write a book about what it is like to be autistic.
Judy Barron's narrative is interspersed with passages of varying length by Sean, who provides his version of many of the events his mother describes. He adds explanations of his numerous obsessions. As is frequently the case with autistic people, Sean has an unusually complete and accurate memory of his past, and he has analyzed his childhood memories in an attempt to explain behavior that was incomprehensible to other people. Here he “explains” his obsession with light switches:
I loved repetition. Every time I turned on a light I knew what would happen. When I flipped the switch, the light went on. It gave me a wonderful feeling of security because it was exactly the same each time. Sometimes there were two switches on one plate, and I liked those even better; I really liked wondering which light would go on from which switch. Even when I knew, it was thrilling to do it over and over. It was always the same.
People bothered me. I didn't know what they were for or what they would do to me. They were not always the same and I had no security with them at all. Even a person who was always nice to me might be different sometimes. Things didn't fit together to me with people. Even when I saw them a lot, they were still in pieces, and I couldn't connect them to anything.
And another “explanation”:
There was a staff person at Beechbrook named Sue Laine whom I absolutely refused to speak to. I pretended that she did not exist. The reason for this was that she was twenty-four years old, and I hated the number twenty-four—that was the number of the school bus at Boardman that was always late. It made me furious! Therefore, I ignored Sue Laine.
Here and elsewhere Sean emphasizes the desire for sameness that gave him feelings of security and safety. But that repetition and sameness brought security to Sean is something we could figure out for ourselves. What remains unexplained is why the particulars are the same for so many autistic children who, like Sean, are obsessed with dropping things down holes, with light switches and heat registers, with spinning objects, with license plate numbers and the call letters for radio and TV stations, to name a few. Writing of himself as an eighth grader Sean says, “I was also experiencing a resurgence of my desire to drop things on the floor.” The elevated language does nothing to resolve the mystery of why he wanted to drop things on the floor in the first place.
It is moving to follow the progress of Sean's growing self-awareness, the path by which he gradually comes out of his autistic isolation. In an incident eerily similar to the one I related about my daughter, Sean, age nine, looked fixedly at his mother and said, “What kind of job am I ever going to get?” At age twelve, the burden of surviving and learning to conform among the normal teenagers in school was almost intolerable: “I suffered tremendously at school. I was tormented, teased, and jeered at. . . . Since the pressure to conform . . . was so intense—and I could not get myself to follow the norms—I developed my own defenses. One of these was pretending to be a bus.”
Nevertheless, Sean started having “corrective conversations” with himself to bolster his awakening desire to change his behavior. When Sean was fourteen his father “reached the end of the road with him.” In his extreme frustration and anger, he stopped talking to Sean for eight days. This had a devastating effect on Sean, but it also brought about a new awareness: “I knew I had to change my behavior somehow, no matter how hard it would be.”
Apart from this one incident, the changes in Sean seem to have been part of a maturation process, not the result of anything specific that was done to him, for him, or by him. When he was fifteen he became aware that people use language to communicate with one another, and he read the entire Random House Dictionary. When Sean was seventeen, he saw a television film about an autistic child and recognized that this was a person like himself. “Could it be that what made me like this was a disease of some kind and that I was not a horrible person after all? . . . ‘Mom,' I said, ‘I'm autistic too, aren't I?' . . . All at once I knew that I could ask Mom anything. . . . Inside me a dam burst open. I knew I could use words like everybody else.”
As is so often the case in books that trace a person's development from childhood through young adulthood, the earlier sections ring truer, seem more accurate than later ones that are suffused with a warmth at least partially reflected from the glow of a happy ending, what Sean refers to as “living some sort of miracle.” A slight tinge of sentimentality colors the end of the book. Judy Barron writes, “I was overwhelmed by the logic of his mystifying behavior; so much of it had simply been a desperate attempt to communicate.” This may in fact be clear to her, but it is not self-evident. Most of Sean's mystifying behavior still seems to have been directed inward, to comfort himself through repetition or to lend order to a world beyond his comprehension.
Missing from the end sections of the book are the telling details that were so plentiful in the accounts of Sean's childhood. We want to know what Sean is like now, how he acts, how he appears. When Sean tells us of his difficulties in school we sympathize, but it is only when he adds in a matter-of-fact tone that he helped solve his problems by pretending to be a bus that we realize the extent of his difference from the people around him and the distance he has yet to go.
In the sections of the book describing the “cured” Sean, Judy Barron talks in generalities. While she states that autism does not go away, she tells us little about the part it plays in Sean's life. I study the photo on the book jacket forclues, but it is just a snapshot, not a portrait. I have known a number of people who have emerged to some degree from autism, but none to the extent claimed for Sean. If I met Sean, would I recognize him as autistic?
When I read Sean's passages, especially those in the last third of the book, I am struck by the unmistakable similarity between his style and his mother's. What was the nature of their collaboration? How much “editing” did she do? Does the similarity stem from the autistic person's uncommon talent for imitation?
Answers to these questions, offered in the honest spirit of the rest of the book, would have made even more impressive this portrait of a person—no, a family—we have come to know intimately.
Writing of the desolation she experienced on the day Sean left home for a brief stay in a residential school, Judy Barron says, “I remember his birth, our son so full of promise, of unlimited potential.” It's what we all feel when our children are born, and in infinitely varied ways we watch them fulfill or not fulfill that promise and we reconcile ourselves to the inevitable limitations on their potential. We learn that they are mysterious even as we are. Amazingly, the experience is essentially the same whether our children are Mozarts, Einsteins, Seans, or Abbys. Equally amazing, no matter who they are we couldn't do much better for them than Ron and Judy Barron did for Sean. He says, “. . . my parents gave me the greatest gift I could ever receive—they stuck by me and they never gave up on me.”
And Judy Barron knows why they did it. Without any assurance that their efforts would ever be rewarded, love impelled them to do what they could to rescue their child. As she says, “No one knows the limits of the human heart and spirit.”
Molly Finn is a writer living in New York City.