What Is Mental Retardation? Ideas for an Evolving Disability in the 21st Century

This book is both an elaboration of and debate about the 2002 update of the criteria for "diagnosing" mental retardation published by the American Association on Mental Retardation. Facing 358 pages of arguments, explanations, historical review, and references on the subject is truly daunting but fascinating, both because of the passion and erudition of the contributors and because naming and diagnosing are at the heart of how we work throughout the health and mental health fields.

The condition now referred to as mental retardation has been called idiocy, feeblemindedness, and mental deficiency. In fact the previous name of the American Association on Mental Retardation used to be the American Association on Mental Deficiency. And the name, itself, is still in evolution: the term "intellectual disabilities" has recently come into common usage among professionals.

The 1992 update of criteria claimed "a new paradigm," a focus on the adaptation of the individual in society rather than on "absolute" measures, such as IQ. The essence of changes in definition in the most recent publications is the increasing focus on functionality and service needs and decreasing reliance on IQ test measurements as determining the diagnosis. Some of the authors disdain this relativism as ignoring science and ultimately degrading the definition.

As the many polemics in the book elucidate in one way or another, there is a significant tension between a definition that provides a platform for research—based on measurable parameters—and a definition that supports the individual's qualifications for services. An example that has always been frustrating for those of us who work in schools is that a child whose IQ is above 75 does not qualify for special education services, unless the child is identified as having a specific learning disability. If there were a proper classification for "mental retardation" with appropriate educational interventions associated with it, then such children might receive a more effective and relevant education.

David Coulter, in his chapter on neighbors and friends, states, "Families are looking for help so that their child can become a valued, productive, and responsible member of the community." A definition that focuses on the interaction between the individual and society as the object of assessment and intervention seems most appropriate for furthering this objective. At the end of his chapter, Coulter describes a dream trip through his community populated with individuals with intellectual disability working along with others as students, teammates, waitresses, condominium owners, and even representatives in local government.

DSM-III introduced five axes for diagnosis to identify general medical and psychosocial factors in psychiatric functioning, as well as to try to distinguish state and trait. A major problem in practice has been the emphasis on axis I and sometimes on axis II and a relative failure to use the information from axes III, IV, and V significantly in treatment planning. As for research, axes IV and V seem to be problematic. This has led to procrustean distortions of axis I diagnostic categories, forcing developmental, historical, and traumatic outcomes into disease states.

The 2002 American Association on Mental Retardation classification is nowhere near perfect. But as this book illustrates, the effort to get minds around these challenges is heroic.