Photo by Robert Burroughs
Classes for autistic children are located at Lafayette and Stevenson Elementary Schools in Clairemont, and Horace Mann Junior High School in East San Diego.
Brad’s birth was the best thing that had ever happened to them. Tom Carter presented his wife Betsy with a dozen red roses and watched in awe as the newborn infant screamed with life. The Carters brought him home from the hospital soon after. They had become a family at last.
Some parents in San Diego “hide” their kids.
The baby seemed a healthy one: awake at ail hours of the night, sleeping soundly when his mother wished he would smile and coo for admiring visitors — predictably unpredictable. His doting parents answered his every call, lifting his tiny form from the crib, holding him warmly, gently.
When Brad was one year old. he stopped calling. When Tom and Betsy hugged him, he recoiled. He no longer giggled delightedly when they tickled his plump belly. He abhorred being touched. They wondered what they had done wrong. Betsy searched her memory for clues. Maybe it was the kidney infection she had during her pregnancy, or her poor diet.
“What day is today?” Fonseca asks her students. “Friday!” Jimmy announces. “Good!” she exclaims. “Mark,” she addresses another child, staring into his eyes, “what did he say?” “Friday!”
But no, assured her doctor, other women had the same things, and their babies turned out fine. Then maybe — she cringed at the possibility — it was her breastfeeding, when her nipples became hard and cracked for lack of adequate milk, and feeding time became a painful ordeal rather than a loving exchange. She had heard about such cases, when babies were emotionally damaged by cruel, rejecting mothers. Her doctor scoffed at her fears. Brad was just slow , he told her. He would grow out of it. Clearly, he remarked after each physical examination. Brad was a very healthy child.
But Brad was growing older and not changing At three years of age he still wasn’t talking. He refused to eat solid foods. Awake almost twenty-four hours a day, slamming doors, throwing toys, he was nearly driving his parents mad with his constant motion.
Betsy was grateful, then, to get him out of the house for a few hours a day when he started kindergarten at a San Diego elementary school. He lasted there less than one semester. Brad climbed on top of the piano while the other children sang nursery rhymes. He was uncontrollable, unteachable. His teacher sent him home, and no other school would have him.
The Carters took their son to other doctors, specialists Each one had a different test, a different diagnosis, a different treatment. One doctor concluded he was hyperactive, and prescribed a tranquilizer which only made him worse. Other drugs brought similar results. Another doctor said Brad's problems stemmed from the fact that he was lefthanded. And one doctor simply lamented that Brad was just a plain, rotten kid; he should be taken home and given a stiff beating.
Betsy begged school administrators for a special class. She wrote letters to her congressmen. Nothing came of her pleading.
When Brad was seven years old, he was diagnosed as mentally retarded and was enrolled in a San Diego program for all children rejected from normal classrooms. For the first time he was able to dress himself. He began to calm down, to behave himself. The Carters were relieved to have the problem contained at last. It was not easy for them to accept that their son was mentally retarded, but at least he was finally receiving help.
Then the school psychologist called them for a conference. Recalling the horrors of the past eight years, they attended with understandable trepidation. Brad, said the psychologist, did not belong in this program, for he was not mentally retarded.
“Your son is autistic,” she said,
“What’s that?” they asked.
Autism does not occur very often — estimates run at no more than six times every 10,000 births — but when it does, it can bring in its wake lifelong tragedy for the child and his family. The disorder is one of the most devastating known to man. Although autistic children are usually physically well-developed, they are grossly handicapped in virtually all aspects of thought, behavior, and language.
The term “autism” was first used in 1943 by Dr. Leo Kanner, an American psychiatrist, in describing children in mental institutions who exhibited bizarre characteristics never before combined under a single heading. Most of these children were institutionalized as being mentally retarded, but Kanner found among them common characteristics which he felt warranted a separate diagnosis. Kanner’s autism encompassed children displaying an inability to interact with people from the beginning of life, an inability to communicate through language, an obsession with sameness and resistance to any form of change, and a preoccupation with objects rather than with people. Because Kanner's insights overlapped with other diagnoses, they remained recognized by only a very few professionals until the early 1960s. But increased acceptance only brought with it added confusion — a situation unchanged to this day. More recent descriptions of autism include such varied behaviors as incessant screaming or crying, hyperactivity, head-banging, hand-biting, toe-walking, staring into space, and general psychological inaccessibility. But as researchers note, an autistic child may show these behaviors, and may even show some others.
Adding to the confusion is the wide range of theories as to autism’s cause. Archrivals in the psychiatric community have carried on heated debates regarding psychological versus physiological theories. Kanner believed the syndrome was an emotional one, comparable to psychosis. He postulated that its onset, which usually occurs before the child is three years old, resulted from early emotional deprivation. Observing the parents of several autistic children, he noted that they were emotionally cold, and placed the full blame for autism on “refrigerator parents.”
Dr. Bruno Bettleheim, child psychiatrist at the University of Chicago who has written several books on the subject, and who founded a specialized treatment program for autistic children, continued Kanner’s thought. He theorized that autism results when the child is forced to retreat into himself in order to escape the hostile emotional environment created by his parents. Pointing an accusing finger at the children’s mothers, he charged that unsatisfactory breastfeeding caused rage and inner tension in the child. His treatment program consisted of loving handling of the children by therapists, and play therapy in which the children were encouraged to take out their aggressions on a twice-lifesize statue of a woman which represented a mother figure. Parents of autistic children were, to say the least, outraged by Bettelheim’s theories.
In the early 1960s, research was conducted to investigate the child’s total environment, including his siblings, his parents’ educational level, socio-economic class, race, and religion. No differences were found between the families of autistic children and the families of normal children. No scientific basis was found for parent-as-culprit theories. In fact, one study ironically suggested that having an autistic child in the family may result in emotional disorders in the parents.
Scientists began searching for the cause in nonpsychological areas. One such researcher was Dr. Bernard Rimland, a psychologist who currently heads the Institute for Child Behavior Research in San Diego. Dr. Rimland, who became interested in the subject more than ten years ago when he learned his own son was autistic, postulated that autism results from a chemical imbalance in the brain. His theories, although still the subject of some controversy, at last provided some relief to parents overwhelmed with guilt.
“Imagine being told,” he suggested to a group of parents in 1967, “that your personality is so horrible, so rotten, so intolerable, that your child becomes psychotic rather than relate to you.” He also threw to the winds the belief that psychotherapy could help to overcome autism, noting studies that showed autistic children undergoing therapy improved no more than autistic children not in therapy. Therapy was not only useless, he maintained, but doubly tragic for parents who often met financial ruin in order to pay for it.
Rimland recommended a program including massive dosages of vitamins to counteract the hypothesized chemical imbalance, and a highly disciplined program of behavior modification to correct the atypical behaviors. He exhibited the greatest optimism in stating, “These kids can become mathematicians or musicians or whatever — if they’re given the chance .... If not, they’ll end up as vegetables.” Vitamin therapy has since shown inconclusive results, and although special education continues as one of the most popular treatment approaches, very few mathematicians or musicians have emerged.
Rimland’s outrage at the expense of psychotherapy was not allayed, however. For the most part, special education has been available only in expensive private schools. It was not until three years ago that the San Diego city schools instituted a pilot program for autistic children. It was there that Tom and Betsy Carter were referred by Brad's school psychologist. Following a week of intensive psychological and physiological testing. Brad was diagnosed as autistic and enrolled in the program. He is now the oldest of its thirty students.
Carol Fonseca, a teacher in one of San Diego’s six classes for autistic children, is sitting at arm's length from her four students lined up in a neat row before her. She is pointing to a large calendar on the wall, in the back of the room, her teaching assistant is arranging materials for the next activity. The schedule is clock work-tight, purposely so. There is little chance for things to go wrong.
“What day is today?” Fonseca asks her students.
“Friday!” Jimmy announces.
“Good!” she exclaims. “Mark,” she addresses another child, staring into his eyes, “what did he say?”
“Is that okay?”
“Yeah!” he proclaims.
“And Bobby,” she asks another, “what month is this?”
“Dan, can you say that?”
“Very good! And Jimmy, what is today's date?”
"Very good, Jimmy! Dan, can you say the whole thing?”
“Friday, January fifteen!”
“Very good, Dan.”
Fonseca smiles and pats their heads and hugs them with every response. She is a cheerleader to their slightest accomplishment. Her children, consisting of those at the highest developmental levels (they are placed according to level rather than age), can draw pictures, play with puppets, and do elementary reading and writing. The program's least-developed children are being toilet-trained, play with block puzzles to develop concentration skills, and are just learning to name objects.
The procedure basic to all classroom activities is the use of behavior modification to regulate inappropriate behaviors and instill appropriate ones. It is an impressive success. Children who once bit their hands to the bone, who kicked others with brutish force, who threw raging temper tantrums, are now sitting quietly, their hands folded, paying attention to their teachers, learning. The teachers are quick, to point out that theirs is a “positive-oriented approach” In contrast to forms of behavior modification which use punishment as a means to change. Fonseca and her colleagues offer raisins and cookies, prizes, and for the more sophisticated children, simply words of praise and pats on the head as rewards for good behavior.
The program's structure, explain the teachers in an early-morning discussion, consists of four basic parts, The first, play socialization, seeks to teach the children to relate to others, to accept and give affection; this is accomplished by means of countless group games and activities. Learning proper behavior, which primarily means learning to calm down, is the second part. Third are physical activities which teach the children to sit, walk, and move properly. Last is language development. (The children exhibit a wide range of language skills, from those who are still learning to talk, to one eleven-year-old boy who reads at a tenth-grade level.)
The classes are all calm, pleasant, playful, reminding one of idyllic pre-school or kindergarten years. It is only when one notices a child walking awkwardly on his toes, or another giggling uncontrollably, or the strange sideways glance on a little girl's face, that one is reminded these children are different.
The teachers are enthusiastic about their work, an attitude attested to by the fact that they have chosen to teach the classes in the first place. There are very few training programs for teachers of autistic children, and thus, most of them are largely self-taught, beyond their special education backgrounds, in this new field. When questioned as to a theoretical basis for their program, the teachers quote a currently popular theory which suggests sensory impairment, that autistic children use “proximal" receptors (touch, smell, and taste), rather than "distal" receptors (hearing and vision). Theories, however, make little difference to them. The important thing is that the program seems to be working — the children are being educated rather than institutionalized. The smallest gain is the greatest accomplishment. They most likely will never become great mathematicians, but at least, say the teachers, they can now express affection.
Jack Fleck, supervisor of San Diego’s Special Education Programs for Learning - Handicapped Pupils, is ebullient about the autistic program, and about the special education programs in general.
"Special Education was always the dumping ground," he recalls in his paperwork-laden office in the Education Center in North Park. “In the past three years, we have totally revamped the program. Instead of following the old babysitting philosophy, we are now pushing the kids to the limit."
The impetus for this reorganization is Public Law 94142, a federal mandate which requires that all handicapped individuals, from three through twenty-one years of age, have appropriate and free public education. A secondary requisite is that the child’s education take place in the least restrictive environment possible, which means an end to segregation of handicapped children in special schools, and placement with normal children as much as possible. More commonly known as "mainstreaming.” this movement has been received with some skepticism by school administrators, teachers, and the public.
"The general public is still sometimes afraid they're going to catch it,” says Fleck. Kids are still occasionally cruel to their handicapped peers, but due largely to efforts by principals and teachers to increase understanding between these groups, the transition has been fairly smooth. Classes for autistic children are located at Lafayette and Stevenson Elementary Schools in Clairemont, and Horace Mann Junior High School in East San Diego, and the most positive sign of their mainstreaming success is the fact that children from regular classrooms at those schools have begun to volunteer to help their autistic classmates.
High school classes for the autistic are in the planning stages, as they must be available by this September, in accordance with federal law. An interesting aside to San Diego's rush to obey Public Law 94142 is that in order to do so, it must violate state law. While federal estimates on the numbers of handicapped children range from five to twelve percent of the total school-age population, California law has placed a two percent limit on classes for the handicapped. (Local officials hope the discrepancy will be resolved this year.)
Although this mandate is of major significance for the handicapped, when Fleck’s office instituted the first classes for the autistic, parents did not flock to them with their children. On the contrary, the first students were culled from other special education classes already within the school system, particularly from classes for the mentally retarded when it was discovered that they had been diagnosed incorrectly. In addition, a state-supported program called Search and Serve was established to locate individuals in need of special education programs.
Though difficult to believe in these psychologically enlightened times. Bob Casey of Search and Serve believes that some parents in San Diego “hide” their kids; that is, keep their children out of school. The reasons are many; guilt, over-protectiveness, embarrassment. But most often, Casey explains, many parents just don’t know there are programs available for their children. Or, like the Carters, they have made countless attempts to have their children properly diagnosed and fought their way through miles of red tape, and finally have become weary of the battle. But once they are found and their children accurately diagnosed (still a difficult and controversial procedure), they are generally pleased to get their kids into school.
As enthusiastic as everyone seems about San Diego’s special classes for autistic children, one bit of sobering information must be added: behavior modification works with these children only when constantly applied; it does not generalize to other situations. Thus, the child who sits calmly in the classroom may regress to screaming tantrums when he returns home. Many parents have learned the techniques of behavior modification in order to alleviate this regression, but never does the autism go away. It can be contained, but at this time it cannot be cured.
A comprehensive review of all the work done on autism offers this: "The many different approaches which have been attempted have included family therapy and counseling, psychotherapy for the autistic child himself, various forms of special education, day treatment centers, residential treatment, medication with almost every conceivable form of psychotropic drug (including LSD), vitamins, electroconvulsive therapy, sensory stimulation and sensory isolation. No single treatment has stood the test of time. The children, though improved in a specific respect, remain definitely autistic."
In light of this, many people are now expressing concern that there must be services available to autistic adults. One of the roost vociferous of these is Bob Kuhn, a retired businessman who currently presides over the San Diego chapter of the thirteen-year-old Society for Autistic Children. The Society has been instrumental in the passage of legislation establishing programs, funds, and specialized university training programs in the service of the autistic. Backed by recent federal legislation guaranteeing the civil rights of all handicapped. Kuhn is involved in a number of projects to that effect.
For one, says Kuhn, no programs exist for vocational training of autistic adults, and special housing is virtually unavailable. Currently, autistic children who reach adult age must be cared for by relatives or institutionalized, the very fates which the city’s programs are designed to end. Kuhn wants to see legislation for the autistic similar to that which supports housing for low-income senior citizens. He is also adamant in his belief that countless autistic adults, as well as many children, are still locked away in institutions or vegetating in inappropriate school programs for lack of proper diagnosis. Under the auspices of the Society, Kuhn has proposed that some children now in other special programs be reevaluated.
His suspicions are supported by personal experience. His own son, after all, is the eleven-year-old autistic child who reads at a tenth-grade level and was diagnosed as mentally retarded several years ago. His proposals, he says, met with a "professional gasp" by administrators who are worried about money and manpower. In the meantime, he laments, some children are not receiving the services they need, deserve, and have legal rights to.
The administrators, he continues, tell him that the parents of children who may be undiagnosed autistics are pleased with the programs they already have. But, says Kuhn, perhaps they don’t know any better. Perhaps they don’t realize that their children, misplaced in the wrong setting, could be making better progress in the autistic program. He demands that they be given the information and a choice.
As if that weren’t bad enough, he continues, he believes that Governor Brown’s office would like to slow him down. Kuhn serves on the Protection and Advocacy Panel (PNA), created through federal legislation to protect the rights of and act as advocate to the developmentally disabled. It is organized as a corporate entity separate from any government jurisdiction. However, says Kuhn, the governor’s office recently decided that PNA should be placed under the aegis of the State Health Department, which, he claims, would interfere with PNA’s ability to act freely.
“You can’t very well sue the Health Department if you are the Health Department.’’ explains Kuhn. However, the move to the Health Department was recently determined to be illegal by state legal advisors. Now, says Kuhn, the governor’s office is attempting to place PNA under the jurisdiction of the Office of Public Defenders, which would give that office full veto power on all PNA actions. Kuhn believes that the motivation behind these political machinations is a desire to avoid repetition of recent upheavals in the state mental hospitals, coupled with a wish to prevent further complications in the state’s involvement with private housing issues. But Kuhn says he refuses to be bullied. He has organized a representative body from PNA and one other federally organized advocacy group, and he is currently seeking an audience with the Governor. “If we don't get our way,” he warns, “we will obtain an injunction and file a class action suit.”
Tom and Betsy Carter share Kuhn's concern for autistic children's future. Betsy volunteers her efforts toward the creation of a residential facility currently being organized by the San Diego Association for the Retarded. Recognizing that such a facility would be only partially appropriate for her son, Brad, she concedes that is the best thing that's being done right now.
At the same time, the Carters don't want to look too far to the future. Time has brought them both hope and despair. Betsy recalls the early years when they believed Brad was still young enough to get the right kind of help, the kind of help which would enable him to gain full, adult independence. She remembers his tenth birthday when she cried for three days because his age had advanced to two digits, a milestone, she felt, and he still hadn't caught up with his peers. And as to the future. Brad is advancing toward adolescence, and they don't know what that will bring.
In the meantime, though. Brad is finally happy. From a childhood spent avoiding contact with all others, he is now openly affectionate. And for the first time in his life, he enjoyed Christmas just like his two younger siblings.