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International Handbook of Applied Research in Intellectual Disabilities

John Wiley & Sons

Chapter One

Trevor R. Parmenter University of Sydney, Australia

INTRODUCTION

In 1958, Jack Tizard, one of the pioneer giants in the field of the study of intellectual disabilities, wrote:

What are most needed today are properly controlled experimental studies and surveys designed to answer particular questions about the social costs of various types of administrative arrangements for dealing with mentally subnormal individuals. On the psychological side, we need to discover the most efficient methods of teaching or training those who are grossly subnormal in intelligence, or handicapped in other ways. The efficacy of different forms of treatment, including the psychological effects of medical treatments, must be studied, and new methods developed. How to teach social skills to dull, badly educated people has hardly been studied at all as yet, nor has the treatment of emotional maladjustment or psychopathic instability. (Tizard, 1958, p. 448)

While we would now use more acceptable terminology when referring to people with an intellectual disability, Tizard's injunction remains relevant. Indeed, the following chapters of this book represent a timely response to contemporary challenges that are not at all dissimilar to the core issues identified by Tizard almost half a century ago. In the same year, other pioneers in our field, Ann and Alan Clarke from the UK and later Norman Ellis from the USA, highlighted the need for applied research that recognises "the intimate reciprocal and enriching relationship between theory and practice and the use of experimental method in both cases" (Clarke & Clarke, 1958, p. xiv). Ellis (1963c, p. xi) commented: "Since mental retardation is a social problem, it would seem that the main thrust... would have only applied significance. Such is not the case... research findings and the related theories usually have implications for training or educating the retarded." Clarke and Clarke (1958, p. xiv) further suggested that "mental deficiency is a social-administrative rather than a scientific concept, varying in different countries and within a given country at different times".

This chapter will touch upon these issues in the context of the main historical research developments in the field of intellectual disabilities in the period from the late 1950s to the late 1980s. It will trace events that saw applied behavioural research challenge the exclusivity of the medical research that had dominated the field in the first half of the twentieth century. Later chapters, however, demonstrate the present situation, where multidisciplinary research teams are characterised by their interweaving of biomedical, psychological, social, and educational theories and practices. While the emphasis will be upon applied research developments, one needs to be reminded that all research sits within social, philosophical, ideological, economic, and political contexts. This is especially the case in the field of intellectual disability, given the long history of discrimination this population has experienced (Parmenter, 1991, 2001).

Origins of the International Association for the Scientific Study of Intellectual Disability

This review will draw heavily upon a small number of resources that are representative of research activities in essentially English-speaking industrialised countries. A rich source of the trends in the field is the Proceedings of the regular congresses of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) that was formally constituted in 1964. This association was born out of three international congresses held in Europe in the period 1960-63. The first, held in London in 1960 in observation of World Mental Health Year, was sponsored by the Royal Medico-Psychological Association, the Royal Society of Medicine, and the British Psychological Society, in cooperation with the National Association on Mental Health and the American Association on Mental Deficiency. A second congress was held in Vienna in 1961 and a third in Copenhagen in 1964, at which the International Association was duly formalised with a constitution that was published in the American Journal of Mental Deficiency (1965, vol. 69, p. 599) and the Journal of Mental Deficiency Research (1965, vol. 9, p. 150). The inaugural president was Harvey A. Stevens, the then president of the American Association on Mental Deficiency and Director of the Waisman Center, Wisconsin, USA; he was followed by Alexander Shapiro of Harperbury Hospital, Hertfordshire, UK. In honour of these outstanding leaders, the IASSID awards Stevens-Shapiro Fellowships to enable young researchers to present papers at its regular congresses. These were held every three years subsequent to the Copenhagen meeting until 1988, when the cycle went to every fourth year to coordinate with the quadrennial congresses of Inclusion International. The first official congress of the Association was held in Montpellier, France, in 1967. The Twelfth Congress returns to Montpellier in 2004.

Major Reviews in the Field

A second important resource is the several editions of Mental Deficiency. The Changing Outlook, first edited by Ann and Alan Clarke in 1958, with further editions in 1965, 1974, and 1985. While the majority of contributors are from the UK, Ann and Alan Clarke's international perspective is strongly evident in each of the editions.

Across the Atlantic, Norman Ellis's editorial contributions, such as the Handbook of Mental Deficiency, Psychological Theory and Research (1963c, 1979) and the International Review of Research in Mental Retardation, are relevant. Other publications have been accessed to a lesser extent. For instance, detailed analyses of significant, long-standing journals, such as the American Journal of Mental Retardation, Mental Retardation, the British Journal of Mental Subnormality, the Journal of Applied Behaviour Analysis, and the Journal of Intellectual Disability Research, have not been made. The regular Gatlinburg Conferences held in the USA, and the symposia of the American Academy on Mental Retardation that coincide with the annual conferences of the American Association on Mental Retardation, are also indicative of applied research trends in this field. Wherever possible, primary resources have been accessed.

Development of University Research Centres in Intellectual Disability

A significant feature of the last 50 years has been the increase in the sharing of research efforts across the world, stimulated in large part by the growth of scientific journals, international conferences, and the sophistication of information technology. The field has also benefited enormously from the establishment of major university-affiliated research centres dedicated to the study of intellectual disabilities in Europe, North America, and Australasia. Arguably, two of the most significant developments that have bolstered the research output in the area of intellectual disability in the English-speaking world were the establishment of the Hester Adrian Research Centre at the University of Manchester in 1967 and the establishment of the National Institute of Child Health and Human Development (NICHD) through the energies of President John Kennedy and Dr John Cooke in the USA in the early 1960s (Alexander, 1988).

A Period of Optimism

The significant initiatives of the Kennedy Administration in the field of intellectual disability resulted from the appointment of a special President's Panel on Mental Retardation on 11 October 1961. The Panel's first report, submitted in 1962, made 112 recommendations under eight headings, the first of which called for a vigorous research effort into the causes of intellectual disability and in methods of care, rehabilitation, and learning. The Panel's report also resulted in the passing of far-reaching legislation by the US Congress that authorised significant Federal funds for research, training, and services in the field of intellectual disability. These developments have had a profound impact on our field, especially in the way they focused attention not only on the research and training of researchers, but also upon the place of people with intellectual disabilities in a civil society.

In a sense, at this time, there was a recapturing of the optimism of the mid-1800s for the improvement of the functioning of people with intellectual disabilities, exemplified by figures such as Guggenbuhl, Seguin, and H.B. Wilbur, that was replaced by the darker days of institutionalisation and the eugenics movement of the late 1800s and early 1900s. Lest we are carried away by a sense of triumphalism for the advances we have seen, it is salutary to be reminded that the demise of the nineteenth-century optimism was possibly brought about because, in the words of Murray (1988, p. 101), "they attempted to do too much with too few in the face of too much need".

Despite the exponential growth of research in recent decades, the gap between research and practice remains a significant problem to be tackled. Obviously, the ecological validity of the various research outputs is a key issue. For instance, the research conducted in controlled environments has not always been translated into applied settings. As indicated above, political and economic forces have a direct bearing upon the takeup of evidence-based practices in the service sectors. A further moderating factor relates to the waxing and waning of what Ellis (1963c) termed the "public conscience" (p. ix) and its impact upon the social and political scene.

Subsequent sections of the chapter trace in greater detail the historical development of applied research that laid the foundations for the rich variety of research initiatives described in later chapters.

DEVELOPMENTS IN THE LATE 1950S AND THE 1960S

Prior to this period, the dissemination of knowledge of intellectual disability had been relatively meagre when compared to advances in knowledge of other disabilities. In the USA in particular, the 1950s saw a quickening of resolve to tackle the gaps in knowledge covering this disability (Stevens & Heber, 1964). A significant imperative that was recognised early in this period, and one that would continue throughout the rest of the century, was the importance and interrelationship of research in the biological, psychological, educational, and sociocultural aspects of intellectual disability. However, it is only in recent years that the biopsychosocial approach to disability has gained stronger focus (WHO, 2001).

This principle was highlighted by the grant made by the National Institute for Mental Health in 1955 to the American Association on Mental Deficiency for a project entitled "Technical Planning in Mental Retardation". The brief of this project was as follows:

The basic purpose of this project was seen as the delineation of current needs, the stimulation of creative thinking, integration and organization of work which had already been done, the improvement of liaison between interested groups and individuals-professional, government, lay and parents. For functional and organizational structure the broad general problems were thought to fall into three categories: research, training of personnel, and programming. (US Department of Health, Education, and Welfare, 1955, p. 20)

One of the outcomes of this project was the publication Mental Retardation. A Review of Research (Stevens & Heber, 1964), which brought together, in the US context, the knowledge obtained from research in all the major scientific disciplines that had contributed to a better understanding of the complexities of intellectual disability.

In the 1950s and 1960s, a distinguishing feature between the triennial conferences of IASSMD and the editorial work of Clarke and Clarke (1958) and Ellis (1963c) was that the former covered both the broad areas of medical and behavioural research, while the latter was essentially behavioural in focus. In the case of Clarke and Clarke, later editions acknowledged the need for a more integrated approach. However, Ellis, in both the Handbook of Mental Deficiency and The International Review of Research in Mental Retardation, maintained a heavy emphasis upon behavioural/psychological research issues. As Table 1.1 indicates, over the period of the 11 world congresses of IASSMD/IASSID, the relative percentage of biomedical presentations fell significantly, with a concomitant increase in the percentage of applied research presentations. The percentages of subsections such as epidemiology/classification, philosophy/policy/service models, early intervention, and vocational remained fairly stable.

Both Clarke and Clarke (1958) and Ellis (1963c) observed that until the mid-1950s intellectual disability was a relatively neglected field of study except for some outstanding work in neuropathology and genetics. There had been little change in approaches to support this population since the turn of the century. Basically, the teaching techniques, vocational training, psychological treatments, and socialisation programmes employed were the same as those used with the non-disabled population. Behavioural science was essentially employed in the area of psychometric testing and diagnosis, where the emphasis was upon documenting the nature of the defect. These processes were generally used to exclude disabled persons from a service rather than to provide a programme that might enhance their competence and lifestyle.

Clarke and Clarke (1958) contended that the legacy of the eugenics movement, and the depression and resultant high unemployment between the two world wars, produced a social climate that was not conducive to positive alternatives for these people. In the introductory chapter of Clarke and Clarke (1958), Tizard (1958) supported this assessment of the relative neglect of intellectual disability as a field of study. He observed that

physicians have tended to neglect it as a field because of the seeming hopelessness of effecting specific cures; educationists and psychologists have been primarily concerned with problems of normal children; society as a whole has viewed the social problem of mental defect with a mixture of alarm and embarrassment. (p.

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