The diagnostic link between lack of speech (in the absence of deafness or obvious structural impairment) and mental retardation depends on the premise that behaviour is in general an accurate reflection of internal mental processes, and that nothing is inhibiting the overt production of communication and "masking" more sophisticated language. This premise is not always valid, and the methods for determining whether it is valid may not be the ones now practised in the field of mental retardation psychology. This target article reviews several cases in which people with deafness, physical handicap, and learning disabilities were reclassified out of the category of mental retardation. The recent debate over "facilitated communication" suggests that the burden of proof may lie with those who hold that the actual expressive communication of people diagnosed as mentally retarded does adequately represent their internal language.
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1. There has always been a strong link between the absence of speech, a perceived lack of mental capacity, and the status of civic and legal incapacity. In 1838, at the beginning of the modern era of classification, Esquirol divided people with intellectual impairment into categories based on speech:
Imbecile level 1: speech is free and easy Imbecile level 2: speech is less easy and vocabulary more circumscribed Idiocy level 1: uses merely words and short phrases Idiocy level 2: uses only monosyllables and certain cries Idiocy level 3: no speech (Esquirol, 1838, quoted in Scheerenberger, 1984: 81)
2. In the early twentieth century Binet complemented his test results with judgements based on speech and language measures:
An idiot is any child who never learns to communicate with his kind by speech-that is to say, one who can neither express his thoughts verbally nor understand the verbally expressed thoughts of others, this inability being due solely to defective intelligence, and not to any disturbance of hearing. An imbecile is any child who fails to learn how to communicate with his kind by means of writing-that is to say, one who can neither express his thoughts in writing, nor read writing or print, or correctly understand what he reads, this failure being due to defective intelligence, and not to any defect of vision or any paralysis of the arms which would explain his inability. A moron is one who can communicate with his kind by speech and writing, but who shows a retardation of two or three years in his school studies... (Binet, 1909, quoted in Scheerenberger, 1984: 142).
3. Binet's three-part division surfaced again when the presumptive relationship between overt language production and cognitive ability was built into the modern definition of mental retardation.
4. The American Psychiatric Association (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-IV, 1994) defines mental retardation in the first instance in terms of IQ -- "significantly subaverage general intellectual functioning (defined as an intelligence quotient of 70 or below on an individually administered general intelligence test) resulting in or associated with deficits or impairments in adaptive behavior ...with onset before the age of 18". In the Diagnostic Features section, however, the degrees of severity are also differentiated in part by language skills. Mildly retarded people "can learn academic skills up to approximately sixth-grade level" including, presumably, literacy. Moderately retarded people "... can acquire communication skills ... [but] are unlikely to progress beyond the second-grade level in academic subjects". Severely retarded people "During the early childhood years ... acquire little or no communicative speech ... During the school-age period, they may learn to talk". With profoundly retarded people "communication skills may improve [from an unspecified base to an unspecified ceiling] if appropriate training is provided" (American Psychiatric Association, 1994: 41). Speech is referred to as if it were identical with language - despite the advances in non-speech communication during the eighties, no mention is made of alternative communication strategies. It is assumed that someone who cannot speak will not be able to spell.
5. It is of course true that speech or language status does not constitute the whole of the concept of mental retardation; there are instances of people who are diagnosed as retarded who speak relatively normally, and people who do not speak but are not regarded as retarded (e.g., those with motor neurone disease). Intellectual insufficiency is also associated with foolish behaviour -- as with Simple Simon, or Grimm's Clever Hans -- and with the physical properties that used to be known as the "stigmata of degeneracy" (Alpern, 1967: 73).
6. It is also, of course, true that most people diagnosed as severely or profoundly intellectually impaired have severe speech problems. One question is, however, whether their expressive language problems can be explained by the diagnosed cognitive impairment (as in DSM-IV, where, for example, Developmental Writing Disorder is defined as "marked impairment in the development of word recognition skills that is not explainable by Mental Retardation") or vice versa, with the language problems masking otherwise functional cognitive skills and thus giving rise to a misdiagnosis of overall cognitive impairment.
7. The diagnostic link between lack of speech (in the absence of deafness or structural impairment) and mental retardation depends on the premise that behaviour is in general an accurate reflection of internal mental processes (and the acknowledged exceptions to this rule only strengthen the force of its application in the majority of cases). This premise has been so much taken for granted in this area that it has seldom been specifically mentioned. Indeed, only the emergence of a school of practice based on different principles (in the course of the debate on facilitated communication training: see below) has made it visible at all.
8. The assumption that behaviours reflect understanding has recently been given an expansive formulation by Jacobson, Mulick, and Schwartz (1995). In an article on facilitated communication and science they describe "the scientist-practitioner standpoint" as resting on, inter alia, the following principles: general delays or deficits in language function are closely related to general delays or deficits in intellectual development; the everyday facility with which people with autism or mental retardation use a language (e.g., spoken, written, or pictorial) is an accurate depiction of their ability to do so, and there is no clinically significant phenomenon that inhibits the overt production of communication and "masks" normal communication skills (i.e., actual production is representative of "internal" speech skill). That there is a strong presumptive relationship, in general, between overt production and actual ability is a cornerstone of psychological assessment methodology, statistics, and psychometrics (Jacobson et al., 1995: 755).
9. The entire enterprise of care for people with intellectual disabilities, and the system of power relations that prevails in this area, rests on this putative relationship between overt production and actual ability. This assumption is capable of being rebutted by case-specific evidence in any particular case (and incapable of being conclusively refuted by any single nonconforming case, or by several). It is nonetheless of considerable conceptual significance, providing diagnostic guidance, explanatory support, and what passes in this area for a theoretical framework. It also has considerable practical consequences.
10. Once the validity of the assumption has been questioned, however, the matter is not easy to dismiss. By definition, poor overt language production is consistent with poor actual abilities: it is equally consistent, however, with greater-than-displayed abilities masked by expressive impairments. Indeed, the putative relationship between overt production and actual ability set out by Jacobson et al. has frequently been falsified in relation to particular areas of the field in the past.
11. Historically, the development of non-speech communication over the past two hundred years has in fact been exactly the story of the successive identification of, and provision for, different clinically significant phenomena that have been found to mask communication skills, and hence cognitive skills. Our present conception of intellectual disability represents what remains after these previous re-evaluations have been subtracted from the original classification. The concept of 'intellectual disability' accordingly becomes something of a disembodied abstraction.
12. Deaf sign developed independently in many groups of deaf people across the centuries; nonetheless, deaf people were generally classified legally and socially with idiots until the formalisation and standardisation of deaf sign by the pupils of de l'Epee in late 18th-century France induced a cultural shift (Lane, 1984). Before the development of alternative communication strategies after the second world war, people with physical impairments such as severe cerebral palsy were generally classified with the feeble-minded (Crossley, 1997). The introduction of alternative explanatory systems provided a means of removing the cognitive stigma from these groups, and permitted them to engage in their long struggle for public acceptance and recognition.
13. The association of deafness with feeble-mindedness did not end, of course, with l'Epee. The struggle of the deaf community over the next two centuries to obtain legitimacy for its modes of communication, and the interaction of language modes, evolutionary theory, and professional power relations in this field, has been documented in detail by Lane (1984). Throughout this period, beliefs about the capacity of deaf people shifted up or down in response to the beliefs held in the general culture on evolution, race, and disability rather than in response to any reliable epidemiological data.
14. The development of alternative modes of communication for people with neuromotor handicap -- the creation of a specialism of alternative and augmentative communication (AAC) -- has been even more complicated (Zangari et al., 1994). The use of such methods as communication boards, artificial symbolic languages, and manual sign diffused from a number of directions into the area where physical handicap overlapped with mental retardation (McNaughton, 1990: McNaughton, 1975). Sign and gesture systems originally developed for the deaf were eventually adapted for use with people with motor speech impairment and then with people diagnosed as having aphasia or autism, many of whom had been assessed as mentally handicapped (Creedon, 1973: Vanderheiden & Yoder, 1986). Some encouragement in the use of non-speech communication with people diagnosed as retarded even came from research into primate language (Romski, Sevcik, & Pate, 1988). In light of apes' acquired proficiency in symbolic communication, it became more difficult to argue that the mental capacity of even severely intellectually handicapped children would be insufficient to the task (Deich & Hodges, 1977). Other input came from the rehabilitation and therapy professions and computer science. As various methods were tried with people with increasingly severe handicaps, it became clear that alternative communication modalities often provided opportunities to display hitherto invisible language and cognitive skills.
15. However, AAC is no panacea. People who cannot speak generally have other handicaps. In some cases the same forms of brain damage that prevent workable expressive speech also affect motor planning or the co-ordination of hand use; one form of damage is sometimes associated with another, unrelated form, and in some cases neurologically based specific language disorders such as word-finding problems can affect communication in several modalities, as can problems with perseveration, muscle tone, impulsivity, initiation, and proprioception (Crossley, 1994: 23).
16. The pattern of development over the last several decades has nevertheless been for people with communication impairments to be offered devices that would expand their communication in comparison to its observed base, rather than devices attempting to bring their communication as close as possible to the societal norm -- communication worked up from the bottom, not down from the top. People with defective speech were offered computer-based speech devices; those with only a few spoken words were offered larger but still limited signing vocabularies, and people with no speech were offered yes/no or multiple choice boards. In most cases, failure to succeed with a limited communication strategy was taken to show that the person was cognitively unable to operate even at that level, while success was taken to show that in mastering it they had reached the limits of their capacity.
17. If one ignored both the limited power of the communication methods generally used and the neurological difficulties of the users, then the communication problems experienced by many people diagnosed as severely mentally retarded seemed to confirm the assumption that there was a link between mental retardation and language impairment. The all-encompassing construct 'mental retardation' was sufficient explanation for any incapacity, making any differential diagnosis of specific sub-impairments unnecessary. In Binet's day, for example, the knowledge that such non-cognitive factors as deafness and paralysis could affect communication led not to the search for other such factors that might also affect communication but only to the conclusion that any communication handicaps unaccompanied by deafness or paralysis must be due to mental retardation. Every extension of non-speech communication now appears to be taken as evidence that the noncommunicating residue -- those who cannot use the currently available technology and techniques -- have been correctly classified.
18. The re-evaluations of deafness and physical handicap proceeded on the basis of group classifications, not individual diagnoses. The changes involved the removal of successive groups from the category of idiocy (or mental retardation or intellectual impairment) rather than any questioning of the bases of that concept. No general conclusions have been drawn from the historical process (indeed, the legitimacy of introducing historical, social or cultural processes to aid in understanding current psychological practice is not universally accepted). It would have been possible to deduce from the work of de l'Epee the general principle that people without speech should not necessarily be presumed to be stupid: they may lack a means of acquiring information rather than the ability to process and use it. The acquisition of language in non-speech modalities such as sign or written language can be divorced from the acquisition of speech. These conclusions were not extracted at the time, nor has their absence been commented on until recently.
19. In the absence of such general principles, other discoveries relating to alternative communication modalities have led to no comparable re-evaluation of mental capacity. Some children diagnosed as autistic have reading skills well above those expected for children of their 'mental age'. Instead of revising the children's intellectual status, a new term, 'hyperlexic', has been coined to cover overachievement in reading. The term has been used pejoratively, in the same way as the term dyslexic (Silberberg & Silberberg, 1967: Whitehouse & Harris, 1984). Similarly, when children with autism demonstrate unexpected writing abilities these are termed 'hypergraphia' (Whitehouse & Harris, 1984). Again, Rondal (1995) dealt with the discovery of superior language skills in a person with Down Syndrome, not by raising his estimate of the cognitive capacity of that person (still less of people with Down Syndrome in general) but by lowering his estimate of the capacity necessary to produce superior language skills. As people with disabilities have revealed new skills, the significance of these skills has been redefined to make them compatible with the previous diagnosis of mental incapacity. Intelligence tests based largely on language skills have thus been used to establish a concept of the retarded mind. This concept has been embodied in a diagnosis: once that has been applied to a person it can then override the contradictory evidence of language skills in that person.
20. Facilitated communication training (Crossley, 1994), a more recent attempt to reconceptualise communication handicap, poses a more profound challenge to the position exemplified by the statement by Jacobson et al. (above, paragraph 8). Its negative reception (see, for example, Shane, 1993) illustrates the strength of professional commitment to that position.
21. Facilitated communication may perhaps have made greater headway if instead of challenging the basic concepts of 'mental retardation' it had confined itself to removing another group from under the umbrella of that classification. An example of such differentiation may be seen in the separation in the American education system of learning disabilities from mental retardation. The concept of learning disability has since the 'forties evolved to cover the cases of people who 'cannot speak, write, read or calculate normally even though they had normal intelligence' (Johnson & Blalock, 1987). Such people were distinguishable from those who were considered properly diagnosed as mentally retarded because there was a discrepancy in different aspects of their abilities.
22. The definition of learning disability (in its United States meaning; confusingly, in America 'learning disability' is a diagnosis that excludes 'mental retardation', while in England it is the most common term for 'mental retardation') involved a movement away from purely IQ based views, under which these people scored (by definition) well below the average, to conceptualising a cognitive function as separate from but expressed through performance. It was thus possible to have average intelligence and below-average performance in one or a number of areas. This view has many internal difficulties. It is not clear, in particular, why a separation of 'intelligence' from function would require discrepancy to enter the definition. If there is in the mind a separate 'intelligence' that is consistent with a deficiency in verbal skills, or a deficiency in mathematical skills, or a deficiency in perception and memory, then such an intelligence should logically be compatible with a deficiency in all skills and thus with a test performance showing no discrepancy.
23. In any case, the significance of the area in this context is twofold:
(i) It is apparently possible for performance to be separated from cognition -- "Prior to the recognition of specific learning disabilities, many of these people were misplaced with the deaf, the mentally ill, or retarded. Others remained in the regular classroom with little or no assistance. Gradually, however, their unique needs were recognised and differential diagnosis was emphasised..." (Johnson & Blalock, 1987, p. 2).
(ii) A successful partial differentiation from the remaining body of 'mental retardation' that did not cast doubt on the central (or Jacobsonian) postulate aroused little professional opposition.
24. The fourth and most recent historical instance covered here is that of facilitated communication. The episode is particularly significant because, unlike the previous three episodes cited, no consensus has yet been reached regarding the status of the intervention, and the assumptions involved in the debate are thus brought into higher relief.
25. Facilitated communication training (FCT) is a strategy for teaching or enabling people with severe expressive communication impairments (SCI) to use communication aids with their hands. Initially, a communication facilitator makes it easier for a non-speaker to make selections from a communication aid by providing physical support to compensate for the specific hand function problems of the non-speaker. The stated aim of the technique is to reduce support as pointing and selection skills improve. Users include people with autism and Down syndrome. Initial publications on the use of the technique (Biklen et al 1992, Crossley 1992) reported the establishment of communication by this means with a large number of non-speaking people diagnosed as mentally retarded, and thus suggested that a high proportion of people with SCI diagnosed as intellectually impaired were in fact capable of more sophisticated language use in alternative modalities. It was suggested that internal language skills could not be expressed because of such supervening impairments as problems with physical control (low muscle tone, for example, or tremor), executive problems (difficulties with initiation, for example, or perseveration), problems related to the aphasias (word-finding problems, for example), and the learnt helplessness that arose from the long-term experience of these barriers to communication (Crossley, 1997b). These problems, while real and robust, were multiple rather than unitary, individual rather than necessarily common to the entire group, and at least potentially remediable.
26. The implications of the FCT position were wide-ranging, and, as might have been expected, the movement encountered strong opposition on both practical and conceptual grounds. Howard Shane, a prominent American speech pathologist, described FCT as "an inappropriate challenge to professional belief systems" (Shane, 1993c: p.x). Certainly, some of the tensions between advocates and critics of FCT have been carried over from previous disputes within the disability care professions, with regard to issues such as the value of community living. Advocates of FCT are drawn disproportionately from the deinstitutionalization movement, and critics disproportionately from its opponents.
"The people who wrought such harm on the institutionalized mentally ill are still at work. Now they are destroying the institutions needed for the most severely retarded and autistic people ... The PC people are trying to brainwash us into believing, as they seem to, that there is no real difference between the mentally handicapped and the rest of us, but there is ... How do we combat these seductive but pernicious ideas?" (Rimland, 1993: 3)
27. Many speech-language pathologists and special educators took FCT up with enthusiasm. Critics complained that "the ideologues promoting 'Facilitated Communication' use an especially pernicious form of sales technique ... even at some of our university education departments" (Schopler, 1992: 337). Jacobson et al. state that "The growing deprofessionalisation of direct service provision in 'communitized' and 'integrated' settings has resulted in few voices at the level of program planning and direct service delivery who can evaluate treatment alternatives according to scientific criteria" (Jacobson et al., 1992: 27). They suggest therefore that there is a "growing vulnerability of consumers and paraprofessionals to pseudoscientific intervention strategies" (Jacobson et al., 1992: 27).
[Normalisation and deinstitutionalisation] have been paralleled by transformations in the credentialing of relevant service professions. Criteria for ... [Mental Retardation Professionals] varied, but generally required far less training and experience than did community standards for most recognized professions. As time went on, lax ... qualifications and the expansion of the interdisciplinary team to include members not typically recognized under noninstitutional professional regulation as professionals in any other sense led to marked variation in the quality of service planning and implementation ... We believe that these trends made the developmental disabilities service system ripe for early adoption of a technique like FC. (Jacobson et al, 1995)
28. The popularity of community integration for people with disabilities is linked by these critics with the advocacy of FCT, and the various explanations they advance for the popularity of FCT are also said to be applicable to the perceived vogue for changes in intellectual disability care. The attack on FCT is in fact seen by both advocates and critics as a lever that might throw into reverse the trends towards community integration. For this reason, disability advocacy groups such as The Syracuse Centre for Human Policy are not yet prepared to endorse the FCT method (Taylor, 1995). The unsettled status of the mental retardation care area, and its internal professional conflicts, may perhaps have contributed to the vigour of the debate. Johnson (1972) suggests that
"Charlatanism and quackery are ... a creature of professionalism and not the cause of it. That is to say that periods in which it is claimed that charlatanism is rife and needs to be stamped out are just those periods when an occupation is attempting to establish or struggling to maintain a monopolistic position." (Johnson, 1972: 57)
29. Shane's use of the phrase "an unacceptable challenge to professional belief systems" suggests the extent to which much of the opposition to facilitated communication training relates directly to its refusal to work within the limitations of the Jacobsonian paradigm.
30. In the face of this opposition, the brief vogue for FCT has largely passed. After the initial release of positive findings came a series of reports suggesting that the purported communication was in fact the invention of the non-handicapped partner in the interaction (Wheeler et al, 1993: Klewe, 1993: Hudson, Melita & Arnold, 1993). The American Psychological Association and the American Speech and Hearing Association both issued condemnations of the process based on that evidence. Other evidence (Cardinal, Hanson & Wakeham, 1996: Weiss, Wagner & Bauman, 1996: Crossley, 1997a) supports the contrary proposition that the specific procedures of the negative studies, rather than any inherent problem with the validity of facilitated communication, may have been responsible for their subjects' apparent lack of communicative success. The balance of the evidence is by no means fatal to FCT, and articles reporting the establishment of successful and unexpected communication with people through the method continue to appear (Marcus & Shevin, 1997: Crossley, 1997b). This work, however, has not yet proved sufficient to return the method to general respectability in the United States, although more official support is now forthcoming in Europe.
31. Even the fact that people have achieved communicative independence following several years of facilitated communication training (Crossley, 1997a: Biklen & Cardinal, 1997) has been insufficient to establish either the validity of the method (even for Shane's limiting case, as below, of 'one alleged competent user') or of the existence of any condition remediable by its processes. Beukelman & Mirenda, authors of a leading textbook in the field of AAC, have strong reservations about the use of facilitated communication but nonetheless note the existence of
"a small group of people around the world who began communicating through FC and are now able to type either independently or with minimal, hand-on-shoulder support. There can be no doubt that, for them, FC "worked," in that it opened the door to communication for the first time. ... We include FC here because of Sharisa Kochmeister, Lucy Blackman, Larry Bissonnette, and others who now communicate fluently and independently, thanks to FC. For them, the controversy has ended." (Beukelman & Mirenda, 1998)
32. Beukelman and Mirenda seem, however, to have misunderstood the nature of the dispute in this area. It might be thought that the physical presence of such students with newly developed independent communication, and the communication of their testimony as to the nature of their previous difficulties, would retrospectively establish the existence of a phenomenon, 'clinically significant' or no, that had evidently until this time inhibited their overt production of communication and 'masked' their normative communication skills. It might also be thought that the existence of people displaying a hitherto unrecognised communication-inhibiting phenomenon would at least establish that such an effect was not impossible.
33. Shane, for example, put forward as a basis for his disbelief in the validity of FCT the argument that "Not one alleged competent user of the technique has come forward to prove the technique is genuine." (Shane, 1993a: 13) The next issue of the same journal contained an article by Anne McDonald, a purported FCT user, entitled "I only have one life and I don't want to use it all proving I exist", giving details of validation tests she had undertaken (McDonald, 1993:21-22). In his response, Shane did not comment on the material McDonald had adduced as evidence for the validity of her communication.
34. An alternative means of dismissing the significance of such cases is to regard them as rare individual exceptions to a general rule, in which a very strong but defeasible assumption has been for once refuted. Any falsification of the relationship between expressive language and intellectual disability, it is suggested, can refer only to individual cases, which are not ruled out by, for example, Jacobson's claim of a relationship "in general". It is not clear what evidence would, under this approach, suffice to cast doubt on the proposition in general.
35. Those who are sceptical about FCT reject historical analogies on the grounds that the changing boundaries of intellectual disability represent not conceptual shifts, but the progressive improvement of diagnostic processes. They argue that the mistakes of the past are conspicuous only because they have now been recognised as mistakes, and thus in fact represent successes. No analogy is recognised between, say, the establishment of communication with deaf people in the 18th century and the possibility of establishing communication with 'mentally retarded' people without speech today; the deaf were linguistically capable but without a means of communication, while contemporary cases appear to be incapable of language. In contrast, advocates see culturally based misdiagnosis in the past as raising the possibility of culturally based misdiagnosis today, with analogous social assumptions concealing the linguistic abilities in both instances.
36. Whatever one's belief regarding the utility of FCT as a method of communication with people with disabilities, the episode has certainly clarified the extent of the commitment among the core professions in this field to Jacobson's "presumptive relationship... between overt production and actual ability"; their opposition to the hypothesis of intact internal language in a proportion of people diagnosed as intellectually disabled, and the obstacles that would need to be overcome before a re-evaluation of the kind involved in FCT could and would be acceptable.
37. The evidence nonetheless continues to accumulate that intellectual disability is what in legal contexts is referred to as a suspect category. Prevalence rates differ threefold between different periods across the lifespan (Borthwick, 1994a), eightfold across American states (Massey & McDermott, 1996), and thirtyfold between nations. People with intellectual disabilities have shared in the general rise of approximately one standard deviation in unadjusted intelligence scores known as the Flynn effect (Flynn, 1994); if scales had not been renormed, the category would be almost deserted. The elements of the diagnosis are in some respects internally contradictory (Borthwick, 1994b).
38. Similarly, evidence accumulates that language is deeply rooted in the structures of the mind -- in Pinker's words, a language instinct (Pinker, 1994). It is now accepted on the basis of the work with apraxia and aphasia covered by such writers as Sacks (1985) that language is both easier to damage and harder to exterminate than had been thought. The time may be approaching when the burden of proof will, as previously in the areas of deafness and physical disability, shift from those who cast doubt on the explanatory power of the concept of intellectual disability to those who wish to justify it. Those who believe in the Jacobson formulation -- that there is a strong presumptive relationship between overt production and underlying ability -- could perhaps set out the reasons for their belief.
39. While the key professions in the area of mental retardation care may be unable to contemplate any questioning of the current model, others studying disability are bound by no such self-denying ordinance. Any person dealing with a person diagnosed as mentally retarded (or intellectually impaired, or learning disabled) should specifically consider the possibility that the observed disability could be accounted for not by an all-encompassing general difference but by a more parsimonious assembly of particular symptoms -- that 'mental retardation' may be, both in any given case and in its wider conceptualisation, inadequate as an explanatory concept, undefinable as a scientific entity, and unhelpful as a clinical diagnosis.
40. Wittgenstein asked why people had ever thought the sun went round the earth. Because, his straight man replied, it looks as if the sun went round the earth. "Really?" said Wittgenstein. "And what would it look like if the earth went round the sun?" [FOOTNOTE 1]. Existing observations are similarly compatible with two directly contrary hypotheses -- global mental-retardation-based language deficiency, and various combinations of specific and limited speech and executional impairments masking relatively intact language understanding or cognitive processing. We believe that the latter hypothesis involves fewer problems and offers the prospect of greater educational gains.
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