The study of Down syndrome, the most frequent genetic disorder affecting development, has led to a rich body of interdisciplinary research in genetics, neuroscience, psychology, and education. These collaborations have not only promoted a better understanding of the condition itself, but also favored an increasing recognition that many neurodevelopmental disorders have strong genetic components even though their genetic underpinnings still need to be better understood and the characteristics of their neurocognitive developments better specified. Fifty years of intensive research on Down syndrome following the discovery of the genetic basis of the syndrome have lead to a reasonable understanding of many of its major developmental aspects. On this basis, it has become possible to define an interdisciplinary framework for locating, justifying, and assessing early rehabilitative intervention.

The purpose of this book is to represent some of the major ways in which a comprehensive neurocognitive rehabilitation program may be conceptualized and carried out, taking into account the spectrum of specific knowledge available from the genotype, brain development, and the behavioral phenotype. By comprehensive, we mean a neurocognitive approach connected transactionally with the major therapeutic endeavors in neighboring fields such as neurogenetics, experimental environmental enrichment in animal models, molecular and genic therapies (viewed as synergistic with neurocognitive rehabilitation), pharmacology, pediatrics, and cardiology for infants with Down syndrome.

Fifty years ago, early intervention (EI) for infants and young children with Down syndrome (DS) did not exist in any formalized or universal way. Beginning with a few experimental programs instigated by the advocacy of parents and the forward thinking of researchers, the field of EI for infants and young children with disabilities was born. Since then, steady progress and significant changes have occurred in the practice of EI. Many factors are influencing what we know and how we think about EI – changes in our understanding of and research about the development of infants and young children with DS, research on early development and learning more generally, and significant policy developments and changes in expectations about participation of persons with disabilities, including those with DS, in education and the community.

This chapter presents an overview of the history of EI, with a particular emphasis on EI for infants and young children with DS. The history includes summaries of: (1) the goals of EI for both the children and their families and how they have changed over the past 50 years; (2) research on the efficacy of EI as well as its actual implementation in practice; (3) how research in early childhood and early learning has in the past and will in the future affect the practice of EI; and (4) how research and policy developments concerning older children and adults with disabilities, including those with DS, are influencing the practice of EI. Conclusions about where we have been with research and policy developments are used to discuss implications for the future directions of the EI field.

More states and governments are promulgating laws and regulations ensuring that early education and care for the child with a congenital handicap and her/his family is readily available on an equal basis for everybody. Conceptually and technically, major progress has been made in the last decades particularly in the industrialized countries. What is still missing, however, is a fully fledged translational science of neurocognitive rehabilitation. We have been concerned with the various facets of early rehabilitation directed particularly toward the infants and children with Down syndrome (DS). The basic methodological principles and recommendations are likely to be valid for other congenital genetic syndromes of intellectual disabilities, however, pending further research on development in these syndromes. One of the objectives of this book has been to reunite, in a single opus, technical contributions from a variety of fields bearing on the general problem; that is, given the present biological limitations, how to improve the abilities of the child with DS to a maximal extent in a variety of aspects relevant to her/his place as an active member of society. As stressed in the various chapters, it has become clear that the best chances to achieve such a goal are through early (even very early), intensive, and systematic intervention, conducted by competent operators in close collaboration with the parents and the schools.

Introduction

Strictly speaking, the notion of a developmental perspective in the field of mental retardation applies to the developmental–difference controversy associated with Zigler (Zigler & Balla, 1982). Its major emphasis is on understanding the development of nonorganically impaired individuals with mental retardation. Cicchetti & Pogge-Hesse (1982) have adopted a more “liberal” developmental perspective to explicate the early development of infants and preschoolers with Down syndrome. Rather than summarize their excellent reviews of the issues in this area, this chapter will draw upon their work to provide the definitional framework for approaching the topic of intervention strategies for individuals with Down syndrome from a developmental perspective.

After a summary of some of the definitional issues, a brief history of early intervention programs will be presented. This history will show that social, political, and child development research factors influenced the emergence and proliferation of early intervention programs for infants and preschoolers with Down syndrome. A review of early intervention programs for infants and preschoolers with Down syndrome will follow and will include discussion of basic developmental research findings on Down syndrome that have influenced the design of these programs (or might be considered more seriously in the future). The links between the goals of early intervention programs and the goals for the later development of children with Down syndrome are summarized in the conclusion.

For purposes of this chapter, a developmental perspective toward intervention refers to an approach toward programming decisions based on developmental theory and research. Every intervention program must adopt a set of working assumptions to make decisions about the “who, what, why, when, where, and how” of the program's objectives and its strategies to accomplish them.