Emory Medicine, Spring 1994

Inside a Private World

by Susan Carini

In "Bartleby the Scrivener," a short story by Herman Melville, a man who does a "snug business" in rich men's bonds, mortgages, and title deeds hires a young man to help him with some copying. As the narrator describes, "In answer to my advertisement, a motionless young man one morning stood upon my office threshold. ... It was Bartleby."

Once hired, Bartleby takes his place behind a screen and plies his repetitive task - silently, even in the face of his employer's questions. Even when these questions reach a nagging pitch, Bartleby remains unresponsive.

Although Bartleby does not have autism, his behavior does mimic some of the signal characteristics of the disorder: limited language capacity, obsessiveness, remoteness, abnormal ways of relating to people. And in his employer's consternation, frustration, and even rage, there is the face of our own all-too-typical reaction to autism - our inability, sometimes, to grant that although the behavior of persons with autism is at times vexing, it is certainly not willed.

Emory's Autism Resource Center serves both children and adults with this disorder. Left to right: Dr. Joel Bregman is medical director of the center; Dr. Gail McGee heads its early intervention programs; and Dr. John Gerdtz directs family and community education programs.

At Emory's Autism Resource Center, which opened in June 1992, the scene is very different from that depicted in "Bartleby." Here, persons with autism from around the state can find resources to help them function in a world where social interchange is at the heart of almost all endeavors. For preschoolers, an early intervention program integrates kids with autism with their typical counterparts, to the advantage of both groups. For school-age children, the center's staff helps place and keep kids in a mainstream educational environment. And for adults with autism, the center provides services to help them hold down jobs and live peaceably with their families.

The Emory center, a component of the Department of Psychiatry and Behavioral Sciences, came into being as a result of the combined efforts of parents of children with autism, who have worked during the past five years with the state's Department of Human Resources, the Georgia chapter of the Autism Society of America, and the Childhood Autism Diagnostic and Educational Foundation. Thanks to their labors, Georgia now has one of only a few comprehensive autism centers in the nation. "We hope to expand our resources and thereby expand our programs to serve the more than 6,000 people in the state who have this disorder," says Dr. Joel Bregman, medical director of the Emory center.

One-way glass

To understand how persons with autism can benefit from a center like Emory's, one must understand the complex roots of autism itself. The tragedy of this disorder is that it has the effect of one-way glass: Persons with autism can see out, but we cannot see in; and language as a medium for our mutual understanding is lacking or absent. Autism remains mysterious because social and language deficits are at its core and because no two cases are alike. To one degree or another, however, the disorder assaults the normal development of three critical human powers: the ability to form relationships (even with oneself in the form of self-reflection), to communicate, and to explore the environment.

The goal for people with autism is productive, peaceful lives - in other words, the same goal that is basic to us all. To achieve it with autism is trickier, assuredly; however, since persons with autism live normal life spans, life must be as fulfilling as possible, both for the affected individual and that person's caretakers. In the view of Dr. Bregman, who directs the autism center's diagnostic and assessment program and who handles treatment for children 6 and older and for adults, the best treatments tend to be educational and behavioral. "Also, medication can play a supportive or adjunctive role in the treatment of children and adults with autism," he says. "Although medications don't change the core social and communicative deficits of autism, they can help reduce associated behavioral problems, such as agitation, self-injury, and compulsiveness."

In the realm of nonpharmacologic treatment, early intervention, social skills training, and behavior modification therapy are key elements in the development of persons with autism. This therapy is most effective when a child is rewarded for reasonable attempts at a task or prosocial behavior. By following the child's lead and giving him or her a degree of control over the learning situation - including the reinforcements to be received - parents and therapists may succeed in increasing adaptive behaviors and altering undesirable ones.

Benefits of incidental teaching

There is a finite amount of time when a child is young, and it has to be used wisely," says Dr. Gail McGee, a PhD who co-directs the autism center along with Dr. Bregman and who heads its early intervention programs. An experience that Dr. McGee had early in her career formed her ideas about how to make the best use of a child's most impressionable years. She once was asked to consult on the community placements of a group of developmentally disabled children who had been raised in an institution. As she describes, many of the children couldn't even recognize utilitarian objects such as knives and forks. They seemed to have no trouble, however, with such ultrautilitarian objects as brownies. And therein lies the sweet secret of incidental teaching, an innovative treatment approach that Dr. McGee's research team has developed for children with autism.

Incidental teaching surrounds kids with objects they have interest in - an interest strong enough to spark their use of language in order to manipulate that object. Thus, the programs at Emory use fun and a child's own choices as opportunities for learning language and social skills. If a child reaches for a truck, the teacher asks, "What color is it?" and suddenly play becomes a lesson.

"The incidental approach stands in stark contrast to traditional behavioral treatment of children with autism," says Dr. McGee. "With traditional methods, a child might be drilled to identify a ball, say, on a flash card. However, that same child could encounter a ball during recess and not recognize it."

The autism center's preschool and toddler programs - known as Walden and Little Walden, respectively - lack none of the usual hallmarks: construction-paper art; colorful mats on the floor; tot-high shelves and tables; baskets of toys; and teachers with the bendable nature of Gumby everywhere in attendance. (Indeed, they exist in a 1:3 ratio to the children.) The students are a mixture of typical kids and those with autism, learning together. In establishing these schools, Dr. McGee set a tautological goal: to create a "preschool that looked like a preschool" - that is, one where kids with autism can have fun and build the same good memories of their childhoods as typical kids have. The teachers at the Walden schools take a considerate approach to their student body, refusing to identify kids as either typical or with autism because, as Dr. McGee says, "the children themselves make no distinction."

The desire for an inclusive approach is evident in the social-sensory games they play there. Designed to boost the children's social interactions and responses to stimuli, these games always have an extra something in them to attract the children with autism - whether that element is something so simple as spinning in a chair. The ideal mix of children in these classrooms is 12 typical kids to six with autism. Teaching approaches in the classroom are augmented by family programs that prepare parents to do incidental teaching at home and in the community.

P.S., they're P.S. bound

When children graduate from the Walden school, Dr. McGee and her staff assist them in the transition to their next destination, which happily, in most cases, is a public school. Program Coordinator Sheila Wagner, who works with school-age children, tries to steer them clear of behavior disorder classrooms, where negative role models can be reinforced and socialization is damagingly intermittent. According to Ms. Wagner, "socialization is crucial because children with autism need role models." And in the historic movement of children with autism away from institutions - where they were ten years ago - to special education groups to mainstream classrooms, that need for socialization is being increasingly fulfilled.

For normal development children, communication and socialization have that same primacy, which is why the peer-tutor programs that Ms. Wagner sets up in classrooms are so successful. Before a child with autism is introduced into a classroom, Ms. Wagner explains to the kids that the child is 100% school-age kid, with just a few exceptions. She then inaugurates a Friends Club, which involves drawing names from a hat to determine partners for the child with autism when he or she needs them - at recess, show-and-tell, and for special activities. Participation in these clubs is "absolute; no one wants to be left out."

The main point Ms. Wagner stresses is that the elaborate support system - consisting of parents, teachers, classmates - for children with autism can never be even partially dismantled without adverse consequence. While such supports are in place, some children truly do make the grade in regular education classrooms, taking and passing tests, doing art projects and, not least, passing plastic army men around at show-and-tell.

The toughest transition of all

When the age of plastic army men ends and the age of independence dawns, that transition can be a taxing one for the roughly 3,800 adults with autism in Georgia. Opportunities for placement in one of the state's residential or day treatment programs are limited, and an adult with autism could languish on a waiting list for one of these programs for years.

Even for those adults who work, the majority of time is still spent in the home setting, so it is crucial that they be well integrated into their families. For Dr. John Gerdtz, a PhD who directs the family and community education consultation programs at Emory, that goal is achieved by identifying the adult's interests and strengths and then learning how to crowd out negative acts in order to achieve constructive behavior. Stable, predictable schedules help immensely, as does teaching a caretaker that - as when dealing with children with autism - he or she should look for and reward incremental gains.

License to thrive

The same incremental progress desired for persons with autism is being made in the field itself. Vogue treatments, for instance, come but mostly go. "Dramatic claims require dramatic data," warns Dr. Gerdtz.

At the Emory center, parents can count on their children being exposed to interventions that are known to be effective and to promising new treatments that are being assessed by scientific study. "The bottom line," says Dr. McGee, "is that parents want their kids to talk, and we know how to make that happen."

Parent Trisha Staros certainly can give poignant affirmation to that claim. When she brought her daughter to the center, the little girl had completely stopped talking. Now, according to Ms. Staros, "Christina knows that if she wants a cookie, she can say 'cookie' and get one. She can change her world with a word."

As Dr. McGee acknowledges, the ultimate question is, Where do these kids end up? Of the Walden graduates, 17 out of 19 are still in mainstream schools, which is a point of understandable pride for Dr. McGee. She speaks honestly about what early intervention has yielded thus far: Children with autism have made unprecedented strides with language and academics, but they still have social deficits. One of several federal grants Dr. McGee has received of late funds research in this area. "One of the principal future challenges for the Walden staff," she says, "is how to teach kids with autism to be interested in other kids. Overall, we would like to know that we have pushed these kids as far as they can go."


Life Under the Sickle | The Shape of Things To Come
Inside a Private World | A Leader in Good Time

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Web version by Jaime Henriquez.