As a rule, parents of children with cognitive impairments prefer the label "Learning Disabilities" (LD) to the label "Mental Retardation" (MR). The reason is obvious: the LD label implies hope for future "normality" and independence while the MR label implies a future of "abnormality" and dependence. This resistance to the MR label has caused the numbers of children given the designation EMR ("Educable Mental Retardation") by schools to drop off dramatically.

In the recent past, many of these children would instead be given the LD label. This created a problem for LD professionals, as LD programs began, increasingly, to contain a mix of children with classical LD and children who better fit the profile of someone with mild MR. As state and federal education authorities began to crack down on the excessive numbers of children given the LD label, by enforcing the official criterion of a sufficient discrepancy between IQ and achievement scores, creative educators began to search for other labels with greater flexibility to use when the EMR label was functionally appropriate but legally inappropriate. Before going into this issue further you’ll need to know the definitions of the terms Mental Retardation (MR) and Learning Disabilities (LD). LD refers to a severe discrepancy between intelligence and educational performance - in one or more subjects - that reflects a problem in an underlying neuropsychological process that is not attributable to low intelligence, sensory impairments or cultural disadvantage.

MR refers to significantly sub-average intellectual functioning (IQ below 70) existing concurrently with a significant deficiency in "adaptive behavior" (self-help skills and social functioning).*

The practice of label shopping by schools is driven by four factors: 1) the requirement that a child must have a special education label if he/she is to be declared eligible for special education services, 2) the use in state education guidelines of rigid IQ or IQ-achievement discrepancy scores for declaring a child eligible for the MR and LD categories, 3) the judgment by caring educators and parents that a child may need special education services even though he/she may not quite meet existing eligibility criteria, and 4) the existence of other categories such as Language Impairment, which have looser eligibility criteria that are less tied to specific test scores. Added to this mix is the fact that parents now have some degree of influence over the recommendations of an interdisciplinary team, including the assignment of a label, and, as mentioned above, many parents have a problem with the term MR, even when a child clearly qualifies for that label.

Ironically, parents who insist that their children be labeled LD - or anything other than MR - when they enter the special education system, some-times aggressively seek application of the MR label when their children "age out" of the education system. By that time, parents are likely to have achieved a fuller understanding and acceptance of their child’s limitations and need for long-term supports and services, and they may also realize that Department of Mental Retardation (DMR) is one of the better agencies around in terms of the vocational, residential and other services which they are able to offer to eligible clients.

The assumption that LD is a better label for a child to have than MR is based on another assumption: that people with the MR label have limitations which are more severe and global in nature than do people with the LD label. But that is not always the case. For example, there are many people with LD who lack adequate social skills, have few same-age friends, have difficulty finding or keeping a job, and who cannot live independently. The term "Severe Learning Disabilities" is coming into increasing use to refer to people with LD who need services which are similar in nature to those offered people with MR. In fact, it is a safe bet that one can find many people with LD who have more intense and pervasive needs than some of those who are currently being served by DMR.

A fact which is quite relevant here, and which is often overlooked, is that MR, LD and other educational and psychiatric categories are not natural biological categories, but are socially constructed categories devised (and often revised) by committees. Thus, to say that a child "has" MR is very different from saying he has pneumonia or a broken leg. Medical diagnosis is "etiological" in that it seeks to identify and treat the cause - e.g., a specific micro-organism or lesion, underlying a particular set of symptoms. Diagnoses such as MR and LD, on the other hand, are "functional" in that the cause of the retardation or learning disabilities may not be known, nor is it necessarily relevant to treatment, and external behaviors or limitations become the basis for diagnosis.

Devising adequate definitions of educational and psychiatric categories has proven very difficult, as reflected in continuing efforts in scientific and professional literature to come up with better conceptualizations of MR and LD. Much of the difficulty stems from the fact that these categories serve a bureaucratic function like determining eligibility for educational or adult services. And there is no reason to think that any explicit criterion which is chosen, such as an IQ cutoff, will be fully adequate or fair. In the past, concern about the artificial and arbitrary nature of IQ cutoffs mainly focused on the excessive numbers of people who were wrongly placed in "Educable Mental Retardation" classes or wrongly institutionalized. This resulted, in the 1970’s, in the elimination of the former "borderline" category of mental retardation and in the expansion of the newly-invented LD category.

Today, there is concern that the pendulum may have swung too far the other way, and that many individuals who really "have" MR (i.e., are believed by knowledgeable people to fit the MR prototype) are being denied educational or adult services because their IQ scores are too high. This problem of "false negatives" is exacerbated by the fact that early educational and medical interventions, like shunts for hydrocephalus, have caused a rise in IQ scores for many people who "deserve" MR services but who are no longer eligible. This problem caused the American Association of Mental Retardation (AAMR) to suggest in 1992 that the upper IQ boundary of MR be raised by five points, from 70 to 75 in order to consider errors in measurement. This is not as modest a rise as it might seem, as it would more than double the numbers of people eligible, from 2% to 5% of the population.

Another suggestion that has been made, primarily by Professor Donald MacMillan of the University of California at Riverside, is to invent a third disability category, "General Learning Disabilities" to fall at the intersection of MR and LD (technically known as "Specific Learning Disabilities"). The idea behind this suggestion is to address the inequity caused by eliminating the borderline category of MR while also bringing about greater clarity of definition. This would be accomplished by replacing the two currently overlapping categories of MR and LD with the following three, more narrowly-defined categories: a) people with mental retardation would be those with more severe and global limitations and often, a known physical etiology, b) people with general learning disabilities would be those who might previously have been termed slow learners as well as many who today are considered to have mild MR (i.e., people whose difficulties in educational or community settings are due to mild limitations in intelligence rather than to a discrepancy between intelligence and achievement), and c) people with specific learning disabilities would be those who have normal, or above-average intelligence, but who have significant problems in a particular functional area, such as reading, due to difficulties in some underlying cognitive process.

As you may have suspected, most of the difficulties which professionals have had when attempting to devise an adequate definition of MR, and which family members have in accepting a diagnosis of MR, involve people who fall in the mild or borderline area of intelligence. This is because in more severe cases there is a clearer and more obvious link between external behaviors or competence patterns and known genetic or other biological causes. When dealing with people in the mild range of MR, one has only the external behaviors to go by, and one can never be fully certain that they provide an adequate guide to diagnosis.

It has even been suggested, by Robert Trent (in Inventing the Feeble Mind), J. David Smith (in Minds Made Feeble) and Stephen Jay Gould (in The Mismeasure of Man) that mild MR, was a fiction invented by eugenicists such as Henry Goddard and Lewis Terman, the two main American inventors of the IQ test, to ferret out and protect the country’s racial stock from contamination by hidden "mental defectives. "

Today, there are few who believe that MR is a fiction, but there are many, such as Louise Spear-Swerling and Robert Sternberg (in Off-Track), Kenneth Kavale and Steven Forness (in The Science of Learning Disabilities) and Gerald Coles (in The Learning Mystique) who argue that LD is in many respects a fiction. Their arguments are based on several factors, including: the lack of clear differences between those who are viewed as LD and those who are low achievers for other reasons (such as poverty, poor teaching or lack of motivation), the lack of scientific support for the use of the IQ-achievement discrepancy formula, and the absence of evidence for many of the assumptions held by LD specialists.

Parents who have a son or daughter with a significant disability, whether that disability is described with the LD label or the MR label, will probably object strongly to any assertion that their child’s disability is a myth. Family members know all too well the failures, rejections and risks that their sons and daughters have experienced in educational and social settings when caring professionals and family members were not around to provide gentle guidance and to look out for their well-being. This brings me to my main point, one which I have been making in various articles and book chapters for the past 20 years.

What causes someone to be seen as having MR (or, if one prefers, "severe LD") is not their IQ score, or their poor academic performance, but rather their inability to understand or deal with demands of complex social situations. A consumer’s difficulties in the area of "social intelligence," far more than his or her test score or even his or her ability to cook and do other daily chores, is what causes him or her to be viewed as needing long-term supports from an agency like HARC.

Currently to be eligible for services from Connecticut’s DMR, which funds services provided through HARC and other private MR service agencies, one needs to have an IQ score of 70 or less. Although one must also show deficits in "adaptive behavior" (i.e., have poor independent living skills), there is currently very little leeway allowed in accepting that one can have MR with an IQ score over 70, even when one presents a profile of needs and vulnerabilities in the area of social intelligence which is equal, if not greater, than that of others who because of their IQ score are deemed eligible. Needless to say, this has motivated many disappointed parents and advocates to seek administrative and legislative relief.

An example of this a few years ago was shown by parents of people who have Prader-Willi syndrome, a rare chromosomal disorder associated with compulsive eating, social intelligence and adaptive behavior deficits, and IQs which are usually, but not always, below 70. Advocates were successful in getting the state legislature to pass a bill which made anyone with Prader-Willi syndrome automatically eligible for DMR funded services, regardless of their IQ score. Following this example, parents of children with autism (another neurologically-based disorder where many, but not all, consumers have IQs below 70) sought similar legislative relief. This effort was not as successful, mainly because there are many more people who have autism than who have Prader-Willi syndrome (thus creating the possibility of great strains on the already over-burdened DMR budget) but also because the diagnosis of autism (which is becoming increasingly used, even for young children) is not nearly as clear-cut or reliable as the diagnosis of a chromosomal disorder such as Prader-Willi syndrome.

As we can see, the "classification game" is in a rather messy state these days. Parents and professionals often assume that MR, LD and other categories, such as autism and attention deficit hyperactive disorder, are clear-cut, widely-supported and easy to diagnose, while the opposite is often the case. Some have argued, especially those espousing full inclusion, that labels are unnecessary, perhaps even harmful, and that everyone should receive the services and supports they need, preferably in the mainstream, without having to be treated as if he or she is part of a group which is qualitatively distinct both from "normals" and from people who are placed in other equally arbitrary categories. But we live in a society where resources for disability services are finite, and where one must clear major bureaucratic hurdles, based on the existence of an appropriate diagnosis, before becoming eligible for public resources.

The label of LD is preferable than MR to parents and self-advocates because it is less pathological, pessimistic and stigmatizing. The problem, for those who do have LD is that the LD label implies a minor variant on normality, thus limiting one’s access to resources which are reserved for people with more pervasive and intense support needs. Several trends are occurring however, which may reduce the extent of this dilemma. Currently, labels are not needed for accessing early childhood special education services, and one can see such a moratorium on labeling being extended upward to older ages. Also, the United States is currently the only Western nation which still uses the term "mental retardation" (the most popular alternative is "intellectual disability") and the likely adoption in the next 10-15 years of a less disparaging term may reduce some of the resistance to use of the MR category. Service options, for both children and adults, are becoming less linked to labels than in the past, thus opening up the possibility that interventions, and eventually categorization, will be based more on one’s needs and less on a particular label. And lastly, the LD field is in an even more chaotic state than the MR field, and there is a strong possibility that the two fields will come together to carve out a joint "General LD" category, as suggested by MacMillan, to deal with those individuals who fall between the cracks of the two categories.

It is understandable that an agency like HARC might feel that the "DMR pie" is already too small, and any radical expansion of DMR’s mandate might make its clients’ share of that pie even smaller than it already is.

As the brother of a man (with Pervasive Developmental Disabilities) who does not qualify for the MR label, but who has very significant needs and quite limited social intelligence, I know first-hand the heartaches which family members face in fighting bureaucracies which show limited willingness to modify their rigid formulas to accommodate the complex needs of individual human beings. Hopefully, a more rational and humane system will evolve, and the current obsession with labels and categories (along with the underlying fixation on IQ and test scores) will become a thing of the past.