Lynn W. Adams

Autism: A Brief History

This paper discusses how the understanding of autism has changed in the 60 years since Leo Kanner first described the syndrome. Originally identified as an emotional disorder caused by parental ambivalence and rejection, autism today is universally seen as a neurohiological difficulty, whose cause is organic and related to atypical brain development. Evidence for the organic and genetic causes is presented, along with a discussion of how the understanding of autism has evolved during the past half century. The current understanding of autism as a developmental disorder has dramatically improved the quality of care and effectiveness of interventions for these youngsters and their families.

Definition of the Syndrome

Mario is a second grader who loves school. He knows how to read, enjoys math, and looks forward every day to art class. He creates pictures that are covered with thick layers of paint and stickers. These cover his refrigerator at home. His teacher has trouble getting him to stop his schoolwork and go outside for recess. Once outside, he prefers to play alone instead of joining the other children’s games. His classmates admire him for his artwork and his sticker collection, but wonder why he has difficulty taking turns and sharing. Sometimes Mario has trouble switching activities in class and can be very slow or tearful when starting a new project. He still hasn’t found a best friend.

The Theoretical Context of Structured Teaching

Structured Teaching, TEACCH’s intervention approach for people with autism spectrum disorders (ASD), shares principles and techniques with other psychoeducational interventions for this population. For example, during TEACCH’s earlier days in the 1970’s when behaviorism was the predominant educational intervention approach for students with developmental handicaps, most of the TEACCH intervention efforts emphasized reward and punishment contingencies. This approach is similar to many programs based on Applied Behavior Analysis (ABA) today. Structured Teaching continues to share with ABA a highly structured learning environment that facilitates development in people with ASD. Unlike many ABA approaches, however, TEACCH does not create structure by relying on repeated trials that begin with a prompt and are followed by material reinforcements, because of concerns that doing so would likely lead to strong attachment to this routine (sometimes called “prompt dependence”) and would compound already severe problems with generalization. Instead, structure is provided by the physical environment, organizational strategies, and the presentation of materials, which is also similar to the Montessori approach with typically-developing children. Materials are organized systematically in visual ways that are meaningful to individuals with ASD and are also tailored to individuals’ strengths and interests.

Providing Diagnostic Information to Parents

When parents understand their child’s developmental problems and special needs, they can obtain services, they can connect with other parents for support and mutual assistance, and they can form coalitions to advocate for more and better services and for research into treatment and prevention. However, initially learning about their child’s significant developmental problems is very distressing for most parents. First hearing the words “autism” and “mental retardation” is one of their worst nightmares come true, with fear, pain, grief, disbelief, rage, and heartache flooding them as the professional talks. Although professionals in psychology, education, medicine, etc. chose their careers in order to help people, not to cause them distress, the very nature of telling parents that their child has a developmental disability involves inflicting extraordinary pain. So the process of explaining developmental test results to parents can be difficult for professionals as well as for parents (Abrams & Goodman, 1998; Lipton & Svarstad, 1977; Nissenbaum, Tollefson, & Reese, 2002).

The Origins and History of the TEACCH Program

The TEACCH Program as it exists at the time of this publication has served thousands of individuals and families involved with the challenges and problems of the autism spectrum It now employs hundreds of staff with multi-disciplinary training. The program’s mission, priorities, services, and practices are the product of the thoughtful, dedicated work and contributions of many faculty and staff. This chapter is intended to trace the motivating factors shaping the development and history of the program.

Core Values of the TEACCH Program

Several years ago at our University of North Carolina-Chapel Hill University Day observance, the keynote speaker, Dr. Robert Allen, described a Stanford University Business School study designed to identify shared elements of excellent and visionary companies. The authors of this study had assumed that the important variables would be factors such as exceptional leadership, strategic planning, mission statements, profit margins, or some combination of these. Instead, they found that what distinguished excellent companies was a shared core ideology: a set of values and sense of purpose beyond just making money. Moreover, those values were clearly articulated and well-understood among the workers of the companies. The core values were not the same from company to company, although they did have some important factors in common, but they all resulted in progressive growth and excellence.

The Culture of Autism

Culture refers to shared patterns of human behavior. Cultural norms affect the ways people think, eat, dress, work, spend leisure time, understand natural phenomena, and communicate, in addition to other fundamental aspects of human interactions. Cultures vary widely in these respects, so that people in one cultural group might at times find those from another group to be difficult to understand or unusual. They might also evaluate their differences negatively, seeing them only as deficits.

Current Biological Theories of Causation

Today it is commonly accepted that autism is a neurobiological disorder that is present at birth or develops within the first 30 months of life. After almost two decades of research, the precise causes of autism remain unclear. The research on biological causes of autism has been fraught with contradictory and disappointing results; findings are rarely replicated and often do not add up to a coherent explanation. There are several clues concerning the underlying brain dysfunctions in people with autism, however, and the methods by which these brain dysfunctions may be transmitted. These clues will be discussed in this chapter.

Controversial Treatment Issues

Janet lives in a group home with five other women with developmental disabilities. The women sleep two to a room, and they have round-the-clock staff supervision. Each night, one of the women helps the staff cook dinner for the group. A staff member drives the women to work at a sheltered workshop each day, where they assemble gift boxes for a mail order company.