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Revolution in MentalRetardation ResearchH. Carl Haywood aa Vanderbilt University , Nashville, TNPublished online: 11 Jan 2010.

To cite this article: H. Carl Haywood (1996) Revolution in Mental RetardationResearch, Peabody Journal of Education, 71:4, 33-38

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PEABODYJOURNAL OF EDUCATION, 71(4),33-38Cop yright © 1996, Lawrence Erlbaurn Associates, Inc.

Revolution in Mental RetardationResearch

H. Carl Haywood

Research on mental retardation in the 1st two thirds of the 20th centurywas sparse indeed.Those few scientists who devoted their work to this areawere regarded with some suspicion that they were not really capable ofexcellent scientific work in respectable areas. There were , to be sure, someoutstanding names (e.g., Goddard, Doll, Folling, Barr, Lejeune, and Tarjan)whose work seemed all the more outstanding by virtue of the limitedavailability of research on the subject. University students were taught (ifit were mentioned at all) that mental retardation is a hopeless condition,and its victims should be treated humanely while living out their (usuallybrief) lives in custodial care environments. The most frequent diagnosticcategory was Mental Retardation: Idiopathic type, which meant "cause un­known."

When I accepted the editorship of the American Journal of Mental Defi­ciency in 1969 it was the world's leading research journal in this field,challenged, if at all, only by the British publication Journal of Mental Defi­ciency Research. Even so, the volume of manuscripts representing scientifi­cally acceptable research was so low that it was necessary to solicit articles

H. CARL HAYWOOD is Professor of Psychology, Emeritus, Vanderbilt University, Nashtnlle, TN,and Professor of Psychology and Education and Dean of the Graduate School of Education andPsychology, Touro College. Dr. Haywood was Directorof theKennedy Centerfrom 1971to 1983.

Requests for reprints should be sent to H. Carl Haywood, Dean, Graduate School ofEducation and Psychology, Touro College, 350 Fifth Avenue, Suite 1700, New York, NY10118.

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from colleagues, to construct special issues devoted to particular researchtopics, and to work long and hard with authors whose science was goodbut whose reporting left a great deal to be desired just in order to fill thejournal without publishing bad research. Only 10 years later, the volumeof scientifically useful manuscripts had increased to such a number that theeditors were able to select fewer than 15%of them for publication, and therewas a considerable backlog of good articles. In addition-and perhaps evenmore important-good research on topics related to mental retardation wasbeing published in primary-discipline journals, reflecting a quantum leapin the general respectability of work in this field . What had happened in theinterim was truly a revolution in mental retardation research.

During essentially that same period, the actual prevalence (number ofdiagnosed cases) of mental retardation in the United States had actuallydeclined by roughly 1 million persons! I was able to report the following toa committee of the U.S. Congress in April 1982:

If the prevalence of mental retardation in the population of the UnitedStates were the same today as it was in 1970, there would be 7,619,000mentally retarded persons in our current population of approximately233,000,000 ... [but] there are at least 6,600,000 retarded persons in theUnited States today. While that is a very large number of persons, thedifference of 1 million retarded persons between the prevalence rates of1970 and the estimated prevalence rate today represents enormousprogress both in the scientific sense and in the social sense. Even manycases that have not been prevented altogether have, through develop­ments in technology of education and training and in improved healthcare, been moved up functionally from lower to higher categories, forexample from severe mental retardation to moderate mental retardation.[The point was made further that persons in less severe categories ofmental retardation are generally less dependent and require fewer sup­port services.] (Testimony of H. Carl Haywood, 1982)

The conditions that brought about such a dramatic improvement can becharacterized as social, political, fiscal, and scientific-perhaps even in thatorder of importance. At the social level, the dramatic public declaration byMrs . Rose Kennedy-"I have a mentally retarded daughter"-helped be­yond measure to open the closet door on the problem of mental retardation.President Kennedy's determination to place a high public priority on theunderstanding, prevention, and treatment of this group of disorders wasinstrumental in achieving the momentum necessary for an area of greatneed to become one of public enthusiasm. Creation of the National Institute

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Revolution in Mental Retardation Research

of Child Health and Human Development (NICHD), and of its mentalretardation branch, provided a major instrument of public policy, as didPresident Kennedy's Panel on Mental Retardation (which later became thePresident's Committee on Mental Retardation). Funding mechanisms de­veloped within the NICHD, and the combination of small amounts of"seed" money and persistent urging by the Joseph P. Kennedy, Jr. Founda­tion provided essential fuel for the revolution. None of those developmentscould have been effective had the scientific Zeitgeist not been receptive andprepared. Let us, in fact, examine that vital factor first.

Research in mental retardation had been roughly divided into biologicaland behavioral domains, with very little work devoted to social concerns.Conventional wisdom held that biological research was to be focused onprevention-that is, on reducing the incidence of retardation-and thatbehavioral research was to be concerned with treatment (in the broadestsense, education, training, psychological treatment, some social-environ­mental manipulation)-that is, with the reduction of the prevalence ofretardation. Dramatic examples of breakthroughs in the first of these areasinclude the following: FoIling's discovery of inborn errors of metabolismthat might be managed by intervening in metabolism itself; Barr's identifi­cation of sex chromatin bodies, which led directly to karyotyping andamniocentesis and ultimately to identification of the genetic etiology ofalmost one half of the idiopathic conditions associated with mental retar­dation; and Lejeune's dramatic discoveries in both inborn errors of meta­bolism and in the chromosomal identification of Down syndrome. In 1965,about 60% of cases of mental retardation were of unknown etiology,according to a report to the Canadian government. By 1978, this numberhad fallen to 28% (and it has fallen even more since). Of the remaining cases,33% were thought in 1978 to be the result of early influences on embryonicdevelopment and dysgenesis (sporadic chromosomal abnormalities, mul­tiple congenital anomalies, prenatal infectious processes), suggestingstrongly that primary emphases on maternal health and on very earlyprenatal diagnosis would pay very handsome rewards in prevention.

Breakthroughs in behavior science are more difficult to identify, butthere have certainly been some. Sidney Bijou pioneered the systematicapplication of operant conditioning technology to the behavioral trainingof severely and profoundly retarded persons, which had the dual effects ofimproving the subjects' competence and of serving as an indication thatsubstantially greater behavioral competence was possible. Norman Ellis'sinitial application of this technology to the toilet training of severely andprofoundly mentally retarded persons at a Sunland Center in Floridaliterally opened the world both to those persons themselves and to thosewhose job was to look after them. Cognitive science, developmental psy-

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chology, and special education have combined to produce dramatic im­provement in the thinking, learning, and behavior effectiveness of retardedpersons. Given systematic cognitive education, moderately to severelyretarded persons may now accede to Piaget's stage of concrete operations(symbolic, representational thinking), which they are not, by definition,supposed to be able to do, and then learn to read and to do mathematicalreasoning. Research in the communication sciences has produced technol­ogy through which profoundly mentally retarded persons can, for the firsttime, engage in truly social interaction, communicate their needs andwishes, and join the world through language.

The difficulty with the formula that biology equals prevention andpsychology equals treatment is that the two domains would not remainseparate. Prevention of psychosocial retardation, associated with minimalor inappropriate conditions of social stimulation early in the developmentalperiod and with inadequate education later, has become possible throughtechnology developed in the behavioral and social sciences and in educa­tion. Bio-behavioral research (e.g., in teratology) has led to the ability bothto prevent and to offset the development-retarding effects of some, but notyet all, environmental toxins. Nowhere is this refusal to be separate moreevident or more rewarding than in the neurosciences. This area of concen­tration was begun in the Kennedy Center as early as 1979 (late for others,early for a center that was uniquely behavioral, social, and educational inits mission), when it became not only possible but essential that the Ken­nedy Center take advantage of its new familial relation with the School ofMedicine and with other components of Vanderbilt University.

Both President Kennedy and the Congress of the United States had inmind a multiple mission for NICHD. Of course, the new institute withinthe National Institutes of Health (NIH) was to look after the health ofmothers and babies. Coming at a time when the infectious diseases ofchildhood had been substantially conquered, NICHD was to constituteboth a national instrument for research on mental retardation and a com­fortable home within NIH for excellent work in behavior science. In itsimplementation, NICHD has both far exceeded what would have beenpossible without its creation and fallen far short of what President Kennedyand the Ll.S. Congress had in mind with respect to mental retardation andbehavior science. The single administrative instrument of the (originally)12 national Mental Retardation Research Centers (MRRCs) has produced auniquely hospitable environment for research on mental retardation andrelated aspects of human development. Major breakthroughs (e.g., fragileXsyndrome, fetal alcohol syndrome, monitoring during delivery of infants'oxygen and glucose levels, advances in language and communication forretarded persons, advances in cognitive development and cognitive edu-

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Revolution in Mental Retardation Research

cation, and understanding of the processes of social integration of retardedpersons) have been associated with the work of the MRRCs, and there isevery reason to believe that discovery and development will continue, evenat an accelerated rate . On the other hand, investment in behavioral andsocial research has never reached an appropriately high level, mentalretardation has been held administratively at the "branch" level of organi­zation at NICHD, and funding levels-relative to other research pro­grams-have declined in recent years . Clearly, there is room for improve­ment in this vital aspect.

Public Law 88-164, the Mental Retardation Facilities and CommunityMental Health Centers Construction Act of 1964, provided for both theMRRCs and the University Affiliated Clinical Training and Services Facili­ties. This act was the other major instrument of public policy for fosteringresearch and improved services in mental retardation. Both programs havebeen threatened regularly-in fact in every period of fiscal "crisis" that thegovernment has experienced since their passage-but both survive todaybecause they have demonstrated their enormous value to the welfare of somany of our citizens.

Change in the very questions that propel research in mental retardationattests to the success of the mental retardation revolution of the last 30 years.When the Kennedy Center opened, the predominant questions were: (a)What causes mental retardation, (b) How can we identify mentally retardedpersons, (c) How can mental retardation be prevented, and (d) Whatcharacteristics of mentally retarded persons can be modified, and how?Unbelievable progress has been made in answering all these questions(although there remain many other unanswered questions). The largestnew questions-that is, ones that have appeared on the scene only in thelast 30 years-are questions of social ecology, essentially the "where"questions: Where should mentally retarded persons live? Where shouldthey go to school? Where and under what conditions should they work?Where and how should they spend their leisure time? Too often thesequestions have been answered without being asked; that is, assumptionsuninformed by research have shaped public policy. Nevertheless, theyremain the vital questions of the day.

As the Kennedy Center celebrates its 30th birthday, it can do so in theassurance that its primary mission-research in mental retardation andrelated aspects of human development-has a secure place in the scientificcommunity. It can also take pride in its own substantial achievements andin its own role in moving the field of mental retardation to a new level wherea smaller percentage of the population may be characterized as mentallyretarded and where those who are so characterized can look forward to amuch higher development of their human capacities than even the most

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optimistic of 1960futurists dared hope. As we approach a new millennium,the great challenge will be to maintain and extend that rate of progress.

References

Mental Retardation Facilities and Community Mental Health Centers Construction Act of1963, Pub . L. No. 88-164, § 77, Stal. 282 (October 31, 1963).

Statement on Appropriations to the National Institute of ChildHealth and Human Development toSupport Research on Mental Retardation and Other Developmental Disabilities on Behalfof theTwelveNational MentalRetardationResearch Centers.Hearings beforetheSubcommitteeon Labor,Health,andHumanServices andRelated Agencies,HouseAppropriations Committee,97th Cong.,2nd Sess. (April 1, 1992; testimony of H. Carl Haywood).

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