Origins, Changing Concepts, and Legal Safeguards
When a health care professional becomes engaged in diagnosing and treating or supporting a person with intellectual disability, the complexities of the disorder become apparent. To provide the best care and the best support, knowledge about neurogenetic syndromes, management of biomedical and behavior features, psychosocial interventions, and the natural history of the disorder are critical. Background knowledge and sensitivity to the needs and life challenges of the affected person are especially important. With new knowledge in genetics, the neurosciences, and social sciences, and the utilization of the richness of family, school, and community resources for these individuals as they develop, the historical stigma of the diagnosis can be reduced and hopefully eliminated. Professionals, families, and community support personnel must join forces so that all available resources are fully utilized, thus allowing the person with intellectual disability to be appropriately treated for his condition and to begin to make choices and become a self-advocate to the extent possible.
This chapter will review changing concepts of intellectual disability over the centuries to provide a context for current diagnostic and treatment approaches. An awareness of this history provides perspective on the centuries-long struggle to recognize the needs of and to provide support to persons with intellectual disability. Legal safeguards are now in effect and are continuing to emerge as services are established that use a developmental model and emphasize a developmental perspective. This model emphasizes how comprehensive evaluation and positive supports at home and in the community can make a difference in the lives of persons with disabilities. The starting point is a definition of the term “intellectual disability.” This will be followed by a brief historical survey of origins and attitudes that are changing after centuries of stigmatization and separation. National and international efforts, which began in the 1970s, are