EDITORIAL

THE STATE OF THE SCIENCE Developmental Medicine and Child Neurology is nothing if not an eclectic journal, encompassing as it does a great many specialities as they relate to the development and well-being of children suffering from disabilities associated directly or indirectly with the nervous system. From a scientific standpoint, our central focus is on understanding the nature of developmental change so that we may plan interventions designed to prevent, cure or alleviate pathological states. Problems associated with the health and development of children involve interrelated sets of variables, which act in concert in a variety of ways to produce a great range of outcomes, and it is largely different outcomes which have absorbed our attention. At the heart of our concern is a set of assumptions which it is well to acknowledge now and again. The first and fundamental assumption is that an individual’s developmental trajectory can be modified by manipulating environmental variables, and perhaps soon by genetic manipulation also. Developmental outcomes, and by implication processes, are not regarded as predetermined, interventions can affect process and thus change outcomes. Another general assumption is that not only the nature of the intervention but also its timing is important. For the most part it is presumed that the earlier an intervention takes place the better, though this does not imply that later interventions will have no effect.

The purpose of an intervention (whether it be supplementary feeding to deal with undernutrition, a surgical procedure designed to prevent contractures, or removing a child from an abusing family) is to effect a change in’ present state or an anticipated future state. The goal is to change the projected trajectory of development from one leading to an anticipated negative state to one in which the outcome is regarded as more positive. A moment’s reflection reveals what an ambitious and important undertaking this is. How can we link the state of an individual now with a desired outcome at some future time? What is the theory of developmental process which drives our interventions? In fact what we often do is acknowledge that thepresent state is undesirable and set about changing that in the belief that the developmental consequences will be positive. The desirability of intervening with the intention of correcting an evident problem may be plain enough, but there are potential limitations and consequences for the cascade of controlled change that we call development. Any failure to appreciate the complex interdependence and intricate interaction of various processes and variables is likely to have far-reaching consequences for our scientific under- standing of development. Both from research and from clinical experience, we

00 d 00

P

2 m m

2 P U

847

- .- 0

W 3 c

know that a useful rule of thumb is that intervention programmes cannot succeed by working in isolation. We need to understand the organic whole and find ways of working with it; therapeutic and educational programmes need to be set in the complex social network which individuals occupy.

One obvious feature of this position is that an interdisciplinary perspective on development is essential. Problems associated with the aetiology and treatment of developmental impairments are not likely to yield to simple unidimensional explanatory models. Many factors affect the growth and development of individual children, and different sets of these factors are likely to be important with different children and different families. Moreover, these sets will change in various ways with the passage of time. An appreciation of these subtleties leads to two conclusions. First, in the absence of any general and useful theory of development, we need a guiding orientation. An important undertaking is the search for a set of general principles with which to describe the emergence of organised and dynamically interrelated systems. These general principles must allow us to deal with variables that range from the molecular to the societal level. A deep conceptual problem for developmental science concerns how we are to envision the integration of different systems and different levels of analysis and explanation. The second and not unrelated conclusion is that we need to make some adjustments in our scientific goals. Specifically, we should move away from an overriding preoccupation with outcome measures and place greater emphasis on understanding process. We need to ask how and by what routes developmental changes can take place. A better understanding of process and an appreciation that there are almost certainly several routes to a specified end-state has important implications both for research and as a starting point for clinical intervention.

The lot of disabled children in the richer developed countries of the world has probably improved over the past 25 years. In support of this view, we could point to the appearance of new diagnostic methods, to refinements in therapeutic procedures, to a greater awareness of the needs of disabled persons in our society and even to significant new legislation. However, if the belief were challenged, or if we were asked to say by how much and in what ways the state of disabled children had improved, how might we answer? We could cite developments of the kind mentioned above, but beyond this what can be said? The fact is we have no satisfactory and sensitive means of measuring the state of the nation’s disabled members, especially the children who are probably the most vulnerable. To be blunt about it, we know relatively little about these children as a group. The problem is neither trivial nor simple; there are conceptual and methodological issues to be tackled. However, the history of science makes it plain that the availability of reliable and sensitive means of measuring things has important, often dramatic, effects. A task for our science, therefore, is to identify dimensions on which to assess the state of disabled children and to devise satisfactory means of measuring these. Such a tool, a set of generally agreed indicators, would be of value not only scientifically but also in a wide clinical and administrative context. So what are the dimensions which should be incorporated into a measure of the state of disabled children? We would be glad to have suggestions.

KEVIN CONNOLLY

848