International Journal of Mental Health

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Problems of Applying Behavioral Measures in

Assessing the Incidence and Prevalence of Severe
Mental Retardation in Developing Countries

Ann M. Clarke & A. D. B. Clarke

To cite this article: Ann M. Clarke & A. D. B. Clarke (1981) Problems of Applying Behavioral
Measures in Assessing the Incidence and Prevalence of Severe Mental Retardation
in Developing Countries, International Journal of Mental Health, 10:1, 76-84, DOI:
10.1080/00207411.1981.11448878

To link to this article: https://doi.org/10.1080/00207411.1981.11448878

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 Int. J. Ment. Health, Vol. 10, No.1, pp. 76-84
M. E. Sharpe, Inc., 1981

PROBLEMS OF APPLYING BEHAVIORAL MEASURES

IN ASSESSING THE INCIDENCE AND PREVALENCE
OF SEVERE MENTAL RETARDATION IN DEVELOPING
COUNTRIES

ANN M. CLARKE and A. D. B. CLARKE

Early identification of the more severe forms of retardation has

been perceived as important for four reasons: (1) to provide a base-
line aga~nst which changes in incidence and prevalence can be com-
pared; (2) for cross-cultural comparisons; (3) for purposes of plan-
ning necessary services; (4) for commencing remedial measures
(whether general or specific) as soon as possible and for evaluating
their effects, if any, and the cost-effectiveness of different measures.
It is probably useful to differentiate cross-national from cross-
cultural studies, reserving the latter term for areas where there
is a very wide gap in relative development across the populations,
leading to both qualitative and quantitative differences in a con-
stellation of psychosocial and economic processes. Thus, a com-
parison of the greatly differing incidence of phenylketonuria (PKU)
between Ireland and Canada would be seen as a cross-national com-
parison. Here the only problems might be accuracy of sampling
and the standardization of methods of measurement; it is assumed
that the costly business of training personnel and the availability
of laboratories are roughly constant in both countries.
There are, of course, a number of possible comparisons that
hypothetically can be made in cross-cultural studies. For example,
the prevalence of ten-year-old children with Down's syndrome in

Dr. Ann M. Clarke is a reader in the Department of Educational

Studies, the University of Hull, 173 Cottingham Rd., Hull HU5 2EH,
England; Dr. A. D. B Clarke is a professor in the Department of
Psychology, University of Hull, HU6 7RX, England.

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 PROBLEMS IN ASSESSING INCIDENCE AND PREVALENCE

Calcutta could presumably be compared with their counterparts in

Copenhagen. Such investigations might illuminate important mat-
ters such as the ease and accuracy of case finding, selective mor-
tality, demographic trends, and the quality of public health.
This workshop is concerned with the very difficult problem of
considering how to evaluate the incidence and prevalence of severe
retardation in countries where health services are relatively prim-
itive and where there are more pressing calls on such facilities as
are available. We are going to assume that any attempt to establish
an epidemiological survey of this kind must have as a prime focus
of concern the welfare of children developing in cultural contexts
entirely different from our own. In other words, we shall regard it
as both pointless and unseemly to advocate that scarce resources
be applied to the pursuit of a purely scientific goal.
We also assume that in countries such as India, Pakistan, Sri
Lanka, and many of the new African states there are relatively
small populations of wealthy, educated, urban families for whom
something approximating the health services more widely available
in Europe and America are within easy reach. The incidence of
severe retardation among such families is unlikely to be much
higher than in their Western counterparts, depending to some ex-
tent on religious custom (in relation to abortion) and on variations
in the gene pool. These families are likely to ensure that privately
funded educational provision is available for their offspring. These
services will not, however, be available to the vast majority of citi-
zens in these countries, among whom high rates of infant mortality
will presumably result in a relatively low prevalence of the more
severe forms of mental handicap of known or as-yet-unidentified
etiology.

Incidence

Severe mental retardation in developed countries arises almost

without exception from pathological factors, both genetic and en-
vironmental. Moreover, as is well recognized, the prognosis for
improved levels of functioning in the people thus afflicted is not at
all good except in the area of training for specific skills. There is,
however, some evidence that average IQ levels in children with
Down's syndrome have increased (presumably for social reasons)

77
 ANN M. CLARKE & A. D. B. CLARKE

over the last decades (Connolly, 1978). Even so, one must obvi-
ously be aware that potentials are very limited in comparison with
those of even the mildly retarded.
There is another problem to which attention should be drawn,
namely, that of children who present as severely retarded, but
who have in fact no primary pathology. Cases of this kind are
probably exceedingly rare in developed countries, though a few have
been documented, including the Czech twins whose recovery from
severe rickets, dwarfism, mental retardation, and emotional dis-
turbance at the age of seven has recently been recorded by Kolu-
chova (1972, 1976). An earlier somewhat similar case was de-
scribed by Mason (1942) and Davis (1947). These case histories
have, among other things, served the seminally useful purpose
of demonstrating that in certain cases of severe retardation diag-
nosed at a fairly late age, owing entirely to exceptional degrees of
deprivation and isolation, recovery is possible. It is tempting
under the circumstances to speak of complete recovery, so dra-
matic have the changes been; but there are those who might sug-
gest that this has not (and by definition cannot) be proven.
Because of our association with the publication of the history of
the Czech twins and our position regarding the influence of early
environmental events, we have had the privilege of access to as-
yet-unpublished material collected by Angela Roberts, a research
nursing sister in the Department of Child Health at the University
of Manchester. She spent a period in Bogota, Colombia, associated
with a missionary orphanage that catered for a small group of
abandoned, illegitimate babies or infants given up because their
parents could not cope. The illegitimate were often the babies of
young teen-age servants and sometimes were literally foundlings.
The case of Adam may illustrate our argument for the possibility
of a greater prevalence of such children among the retarded in
Third World countries.

Abandoned by his mother at four months, Adam was "cared for" in a girls' re-
form school. His main diet was a watery vegetable soup and porridge, and he re-
mained in a bleak, bare, windowless room, in perpetual darkness, unless the door
was open.
On admission to the mission orphanage, Adam, aged 16 months, weighed only
12 lbs, 12 oz. He had the physical signs of nutritional marasmus, his head was
infested, and he had scabies, a fungal rash, and numerous sores. His abdomen

78
 PROBLEMS IN ASSESSING INCIDENCE AND PREVA LENCE

was grossly distended. Emotionally he was completely withdrawn; he could not

sit, crawl, or walk. His development appeared similar to that of a three-month
infant. A local doctor diagnosed him as an extremely malnourished, mentally
retarded spastic.
By 23 months of age Adam's weight was 23 lbs, he could sit up from a prone
position, could stand holding furniture, could imitate two words together, and
could feed himself with a spoon. A month later he could stand without support for
a few seconds, and could walk around his cot holding on with one hand. At 26
months, 10 months after admission, he weighed 26 lbs, took his first independent
steps, and had improved emotionally and in other ways. At 32 months he was
adopted by a North American family. There were, of course, problems, but by
the age of five Adam was essentially average both mentally and physically. At
the age of seven years, nine months, Adam is in the second grade and is evaluated
by his teacher as an average seven-year-old, who is showing signs of specific
talents.

Probably analogous developmental delays have been shown by

groups of children reared under conditions of great adversity in
institutions in the Middle East (e.g., Dennis, 1960; Dennis & Najar-
ian, 1957). In research in Teheran, foundlings were, as a result of
restrictive handling and neglect, so severely retarded in motor de-
velopment that only 15% between the ages of 3 and 4 could walk
alone, compared with a control group selected from the same
foundling population and transferred to a new, model institution,
where the comparable figure for walking alone was 94%. Dennis
was able to study only motor development, but it is likely that the
former groups were as severely retarded in all other spheres.
Such studies indicate that the combined results of malnutrition
and/or lack of social stimulation can give a true picture of grossly
retarded development, which can resemble that of children who
prove to be permanently severely retarded. Obviously, the sophis-
ticated research worker will always look at a developmental score
or rating in its social context; even so, the likelihood of prognostic
errors is ever present, and this problem is presumably a signifi-
cant one in epidemiological research in developing countries.
In the case of the Colombian child, and of-others from the same
orphanage who had experienced less severe deprivation, the happy
outcome appears to have been due to the presence of voluntary
workers in a local orphanage and to later adoption into an above-
average home. It is unlikely that such provisions will be available
to the countless children who might benefit from such an ameliora-
tion of their environment. We assume that if luck had taken a dif-

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 ANN M. CLARKE & A. D. B. CLARKE

ferent course, Adam would have prematurely died.

In the present context Adam's history serves to illustrate a de-
velopmental principle rather than a potential model for rehabilita-
tion. The principle is the reversibility of early severe deprivation.
This may be important in view of the evidence suggesting that it is
not only among the general population that developmental scales in
infancy have virtually no predictive power but also, to some ex-
tent, in the problem area of early screeningfor mental retardation.
lllingworth (e.g., 1961, 1966, 1971) is well known for opposing
the pessimism of those who argue that neonatal or infant examina-
tions have poor predictive power. In particular, he believes that
the absence of physical and neurological examinations has limited
the predictive capacity of other approaches and that there have been
insufficient follow-ups of retarded children.
Reviewing lllingworth's 1961 paper, Kushlick & Blunden (1974)
point out that 75% of a group of retarded children were identified
correctly from initial examination in the first year, having on fol-
low-up an IQ below 70. Fifty-nine percent were severely retarded
(IQ below 50), and 21% were not intellectually subnormal by any
standard. Cases of Down's syndrome, hydrocephalus, etc., were
excluded from the follow-up. Hence, Illingworth's margin of error
is one in five for the remainder.
lllingworth's 1966 paper indicates, among other things, that one
cannot be sure that certain early abnormal neurological signs will
be permanent, nor can one be sure that a baby's poor status is not
due to deprivation; on this we agree.
Obviously, clearly recognizable clinical conditions can be studied
cross-culturally, for purely biological attributes (e.g., the 47th
chromosome) are, by definition, culture free. But the majority of
the severely retarded do not present clinically distinct disorders.
Moreover, Stein & Susser (1980) present evidence that persuades
us that the necessary facilities for accurate biomedical assess-
ment at early ages may well be unavailable to the vast majority in
Third World countries. Assuming, further, that high rates of in-
fant mortality will take their toll, there seems little purpose, for
the time being, in attempting to establish early incidence of
severe retardation. Still another consideration is that diseases
such as meningitis may render a number of children severely
retarded well after infancy.

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 PROBLEMS IN ASSESSING INCIDENCE AND PREVALENCE

Prevalence

The assessment of prevalence by means of behavioral measures

at later ages seems far more feasible, though all the scientists who
have devised experiments or gathered observational data in the
field of culture and cognition have at some point obtained evidence
of culture-specific behavior. This applies to research conducted
with normal or above-average members of child, adolescent, and
adult populations and embraces behaviors as disparate as suscepti-
bility to visual illusions, spatial perceptual development, Piagetian
operations, and classificatory behavior. It would not, in our view,
be possible at this time to produce a cross-national culture-
fair test of intelligence, for the simple reason that tests cannot be
culture free. It should, theoretically at least, be possible to devise
tests that would have concurrent and predictive validity within
populations in such countries as Thailand, although whether one
standardized test for the Indian subcontinent, with its variety of
cultures, would be more than a misleading absurdity is another
matter.
The search for behavioral measures that are cross-culturally
prognostic of severe retardation at an early age must, therefore,
be carried out in areas of evident natural biosocial adaptation. At
present the most promising possibility seems to be in the area of
language development. Lenneberg (1967) was among the first to
present evidence that under a very wide range of social and cul-
tural conditions, the emergence of language is maturationally con-
trolled. Certain important milestones are reached in a fixed se-
quence and at relatively constant ages. They are also synchronized
with motor-developmental milestones, although the onset of lan-
guage is not simply the consequence of motor control. The age at
which language is acquired seems to be cross -culturally constant.
A language acquisition device appears to be part of the biological
equipment of all humans, with the exception of those presenting
relatively severe problems - congenital deafness, autism, or very
severe or profound mental retardation. Serious delay in acquiring lan-
guage was a feature of the isolated Czech twins; of Isabelle (Davis,
1947), brought up in isolation with a deaf-mute mother; of Adam, in
Colombia; and of school-age twins in Birmingham who also had a
background of exceptional social pathology (Douglas & Sutton, 1978).

81
 ANN M. CLARKE & A. D. B. CLARKE

In all these cases normal language functioning was acquired during

the course of special educational programs.
It is suggested that a screening examination should take place
routinely on entry into primary school in countries that have uni-
versal education from an early age or, in other circumstances, dur-
ing the fifth year of life. We have not thought it necessary to re-
search the details of a possible cross-cultural language disability
assessment procedure since this is a very technical matter that
should be the responsibility of a small team of experts in develop-
mental psycholinguistics. Indeed, such an endeavor might well be
a highly viable international research project. It is possible that
some relatively simple device designed to assess a five-year-old
child's ability or inability to formulate simple sentences (within
his linguistic context), in conjunction with age-appropriate motor
measures, would suffice as a valid diagnostic method.
Our concern has been to offer (1) some of the evidence that per-
suades us that screening in early infancy, when predictive power is
poor, is unnecessary and unprofitable, and (2) that screening for
severe language disability at the age of four to five years should
ensure that children who are either permanent or temporary vic-
tims of mental retardation will be identified and, hopefully, given
the necessary support. Where educational support is available,
one would expect that during the first year, children who are po-
tentially normal for their population will display the rapid spurts
characteristic of those whose maturation has been delayed for
psychosocial reasons; it is hoped that those with an as-yet-un-
identified serious hearing problem will receive appropriate help.
The remainder, who in some contexts are likely to be the majority,
will almost certainly consist of permanently severely retarded
children. Social attitudes toward and provision for them will pre-
sumably vary from culture to culture, but identification of their
problems should surely represent a step toward helping their
social adaptation.

Summary and Conclusions

1. Cross-national studies should be distinguished from cross-

cultural ones.
2. We assume that in Third World countries the minority of

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 PROBLEMS IN ASSESSING INCIDENCE AND PREVALENCE

well-educated, affluent families are to be differentiated from the

vast majority in their access to sophisticated services.
3. Biomedical screening to establish early incidence seems in-
appropriate in view of lack of Third World resources in the fore-
seeable future. Behavioral screening cannot be done with precision
in early infancy. Furthermore, there are dropouts because of high
infant mortality and "drop-ins" because of the neurological sequelae
of infectious diseases such as measles and meningitis.
4. Severe retardation without primary pathology in cases of ex-
ceptional physical and social deprivation may present similarly to
the permanent condition, but appears to be reversible at least up to
age seven. We do not really see children who have suffered severe
malnutrition and grossly deviant social rearing as potential false
positives, but the point is debatable.
5. Behavioral assessment based on the known facts concerning
maturation of language in conjunction with motor skills offers a
highly viable method of assessing prevalence at around the age of
five, and could be undertaken by relatively unsophisticated but spe-
cifically trained personnel (e.g., health workers or schoolteachers).
Screening at this age should identify children whose deafness has
escaped detection, leaving the autistic, the spastic, and the severely
retarded, including those without primary pathology. So far as the
latter are concerned, a nonprofessional assessor should probably
be able to discover whether any of these severely retarded children
has experienced a grossly deviant pattern of deprivation within his
own social context.
Whether or not the special medical and psychosocial provisions
necessary to overcome severe retardation might be available is a
problem. If not, the differentiation between grossly deprived and
potentially recoverable forms of severe retardation and the bio-
logically caused permanent conditions becomes little more than
academic.

REFERENCES

Connolly, J. A. (1978) Intelligence levels of Down's syndrome chil-

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Davis, K. (1947) Final note on a case of extreme isolation. Amer.
J. Sociol., 52, 432.

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 ANN M. CLARKE & A. D. B. CLARKE

Dennis, W. (1960) Causes of retardation among institutional chil-

dren. J. Genet. Psychol., 96, 47.
Dennis, W., & Najarian, P. (1957) Infant development under en-
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Douglas, J. E., & Sutton, A. (1978) The development of speech and
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illingworth, R. S. (1961) The predictive value of developmental
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