This volume is the American Association of Intellectual and Developmental Disabilities updated reference manual of definitions, which was assembled by a committee of 18 practicing experts and is grounded in research spanning the past 7 years. “The construct of intellectual disability (ID) emphasize(s) an ecological perspective that focuses on the interaction of the person with his or her environment and the recognition that the systematic application of individualized supports can enhance human functioning.” (p. viii) This statement summarizes the goals of the American Association of Intellectual and Developmental Disabilities Ad Hoc Committee on Terminology and Classification in publishing this book. In the same way that physical supports have been accepted for individuals with motor impairments (e.g., ramps in public buildings) and have gradually reduced the stigma of having a physical disability, adaptation for individuals with intellectual disabilities can help them function productively and contribute to their well-being and that of their community. We no longer accept the derogatory terms “crippled” and thus should no longer accept the equally derogatory label “mentally retarded.”
As is now commonly accepted, a diagnosis of ID requires assessment of adaptive skills (communication, self help, community living, and social) and intellectual functioning 2 standard deviations below the mean for age. The first part of the book discusses classification, the tests available, and the vagaries of testing and classification. The authors emphasize the importance of clinical judgment and the synthesis of a multidisciplinary evaluation in making the diagnosis particularly when individuals are at the margins of meeting criteria. They also emphasize the importance of a medical evaluation when ID is suspected. A later chapter focuses on the struggles faced by individuals at the margins with mild or borderline ID and argues for mechanisms to include them in our societal support system.
The latter half of this book is devoted to the discussion of systems of supports needed by individuals with ID, defining ID as a “state of functioning instead of an inherent trait.” Supports are ideally designed to promote individual functioning and personal development to allow an individual to do things that are “normative” for other same-aged individuals within their community, e.g., working, enjoying leisure time, or learning. Support needs will likely be ongoing across the life span, but not unchanging. A careful assessment of an individual's needs is the first step in developing and implementing an individualized supports plan, similar to an individualized educational plan, extending into adulthood. This is far from the reality faced by most families today.
Such disparity between needs and the available supports leads to the final chapters on implications for public policy, education, and support provider organizations. We have pushed supports, in most cases rightfully so, from institutions into communities. Individuals with intellectual and other disabilities are full members of our community, and it is up to us as family, friends, and society members to support making their place integral within our communities. This step will benefit everyone.
Disclosure: The author declares no conflict of interest.
Mary Pipan, MD
Division of Developmental Behavioral Pediatrics
The Children's Hospital of Philadelphia