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 Dr. Tassé is Assistant Professor of Psychiatry at the University of North Carolina at Chapel Hill.
Neela Sakaria: Please provide our readers with some background on the American Association on Mental Retardation. What are some of the primary functions of AAMR?
Dr. Marc Tassé: The American Association on Mental Retardation (AAMR) is a professional membership organization that promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities. AAMR is the oldest and largest interdisciplinary organization of professionals concerned with mental retardation and related disabilities. Through its member activities in 50 states and over 50 countries, including seminars, publications, and amicus briefs to the U.S. Supreme Court, AAMR creates opportunities for self-determination, fosters research to prevent intellectual disabilities, and enhances skills of professionals working in the field. AAMR is located in Washington, DC.
Neela: Tell us about the series of books published by AAMR. Who are they meant for?
MT: AAMR publishes books and monographs that report on current and timely issues in intellectual disabilities-from education, management, and employment, to human rights, quality of life, and self-determination. AAMR books range from practical "how to" guides and handbooks for practitioners, to technical manuals and research reports. The Association also publishes a mental retardation classification manual, where it provides a scientific and clinical definition of mental retardation widely used by groups in the U.S. and abroad. Since 1876, AAMR has published 10 editions of the classification manual. The most recent manual titled Mental Retardation: Definition, Classification, and Systems of Supports was published in June 2002 and was written by a panel of 11 international experts.
AAMR publications can be purchased through www.aamr.org/Bookstore (print copies only) and soon, through www.disabilitybooksonline.com in a variety of electronic formats such as PDF, HTML, and E-monocle. To receive a copy of our publications catalog, email books@aamr.org. AAMR books have been translated into several languages. Queries on international rights and translations can be sent to books@erols.com. In addition to books, AAMR also publishes two highly ranked journals-the American Journal on Mental Retardation (AJMR) and Mental Retardation (MR) both of which contain current research and perspectives of interest to the disability, special education, and rehabilitation fields.
Neela: Who composes the Ad Hoc Committee on Mental Retardation and Classification? How are members selected?
MT: The AAMR Ad Hoc Terminology and Classification (T & C) Committee consists of an interdisciplinary group of professionals appointed by the president of AAMR. The T&C Committee wrote the 10th edition of Mental Retardation: Definition, Classification, and Systems of Supports. There are a total of 11 members on the T & C Committee, including one European member. Members are appointed based on their knowledge and area of expertise (e.g., special education, adult services, legal aspects, supports, adaptive skills, intelligence, health issues, etc.). Assuring an accurate definition of mental retardation requires an analysis and understanding of an array of domains. Once the T & C Committee was assembled, the Committee members meet at least once a year for a face-to-face meeting at the AAMR annual conference, and in addition, several meetings were conducted via conference calls. Preparing the 10th Edition of Mental Retardation took approximately five years of collaborative effort on literature reviews, discussions, and consultations.
Neela: Who are the authors of these texts, and on whose research is the information based?
MT: The authors of the AAMR 10th Edition of Mental Retardation include a group of 11 international researchers, psychologists, educators, lawyers, physicians, and administrators. The authors together form the AAMR Ad Hoc Terminology and Classification (T & C) committee. This Committee is entrusted with the responsibility of providing the most up-to-date definition of mental retardation to the world based upon clinical and scientific evidence. The authors of Mental Retardation work in a variety of settings, including universities, hospitals, state government, and service provider agencies. The content of the 10th Edition of Mental Retardation is based on the most current research found in the scientific journals. Several of the T & C committee members and other AAMR members have contributed to some of this research. Overall, the research upon which the definition, classification, and systems of supports was based comes from a wide range of disciplines, areas, and sources.
AAMR authors in general include the top researchers and professionals working in the field of developmental disabilities.
Neela: Tell us a little bit about the debate surrounding the term "mental retardation." Why did AAMR choose to retain this term, despite the debate?
MT: After reviewing scientific, legislative, and policy implications of a name change for more than three years with all of the sister organizations of AAMR, members of the association decided in a recent vote to retain the name American Association on Mental Retardation for the foreseeable future. To read the arguments for and against the name change, visit the AAMR Reading Room at www.aamr.org/rr/ and look under the subject category "History."
Neela: What kinds of factors are taken into consideration when diagnosing someone as having mental retardation?
MT: There are essentially three diagnostic conditions that need to be present to meet the definition of mental retardation. It is important to note that we diagnose mental retardation exclusively upon the individual's functioning. To meet the diagnostic conditions for mental retardation, an individual must present the following: (1) significant limitations in both (a) their intellectual functioning and (b) their conceptual, social, and practical adaptive skills, and (2) these significant limitations must be present before the person's 18th birthday. Professionals must evaluate these areas of functioning on an individual basis when determining whether or not a person meets the diagnostic criteria for mental retardation.
In addition to the diagnostic criteria, there are also essential assumptions that must be met during the process of diagnostic determination. These assumptions include: (1) the individual's functioning is evaluated within the context that is typical for his or her age and culture; (2) the evaluation is conducted with appropriate consideration for the individual's level of communication, behavior, and motor and sensory limitations; (3) the individual 's strengths and behavioral assets are identified; and (4) needed supports recommended that will favor the individual's functioning in his or her age/cultural group and community.
Neela: What kind of progress has occurred in the field in the last ten years?
MT: There has been tremendous progress in the field of mental retardation in the last ten years. Our knowledge and understanding of causes of mental retardation continues to grow. We have better assessment instruments for intellectual functioning, adaptive behavior, and, more recently, the assessment of support needs. Supports are resources and individual strategies necessary to promote the development, education, interests, and personal well being of a person with a disability. More individuals are living in the community as opposed to psychiatric institutions, and with this has come a certain degree of added challenge to ensuring that appropriate services and supports are available in the community. Internationally, the World Health Organization (WHO) has made great strides in refining the International Classification of Functioning, which provides a universal platform upon which we can communicate about different disabilities. The AAMR 10th Edition of Mental Retardation worked hard to develop a definition and classification system that is compatible with the ICF. Over the past decade we have made gains in certain areas of mental retardation, but we have failed to make gains in other areas. There continues to be disparities in health care services for individuals with mental retardation. Another area of concern relates to the large proportion of the general public that continues to erroneously view individuals with mental retardation as being incapable and to assign negative stereotypes to them based solely upon this diagnosis. Hopefully, in this next decade we can make strides towards redressing public misperceptions and negative stereotypes of individuals with mental retardation.
Neela: Is there anything else you would like to share with our readers?
MT: The AAMR 10th Edition of Mental Retardation is a "must have" book for any clinician, administrator, parent, or researcher who has an interest in mental retardation. In addition to the chapter on the current definition of mental retardation, it contains several comprehensive chapters on topics related to mental retardation, such as etiology, supports, intelligence, adaptive skills, physical and mental health, and more. This book was written by a diverse committee of individuals with extensive experience and knowledge of mental retardation. These are professionals who conducted comprehensive reviews of the most up-to-date scientific literature in the field. It is a useful resource book and an authoritative reference on mental retardation.
Neela: Thanks very much for your time.
AAMR contacts:
For reviews/interviews: Anna Prabhala, (202) 387-1968, ext. 212 or annap@aamr.org
To order book: Call 301-604-1340 or email aamr@pmds.com
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