0891.4222/92 $5.00 + .OO Research in Developmental Disabilities, Vol. 13. pp. 145-156. 1992 Copyright 0 1992 Pngmon Press Ltd. Printed in the USA. All rights reserved.
Plastic Surgery on Children With Down Syndrome: Parents’ Perceptions of Physical, Personal, and Social Functioning Shlomo Kravetz, Aron Weller, and Rivka Tennenbaum Department ofPsyho/ogy,
Bar-l/an University
David Tzuriel School
of Education,Bar-l/an
University
and Hadassah-Wizo-Canada
Research
Institute
Yael Mintzker tfadassah-Wizo-Canada Research institute
Plasfic facial surgery is being carried out on children with Down syndrome with the objective of improving these children’s physical, personal, and social functioning. This study investigated the effect of such surgery on parents’ perceptions, both of the current stalus of their children’s functioning and of changes in this functioning. Perceptions of parents of children who had undergone this surgery in Israel in the years 1982 and 1983 were compared with perceptions of parents of children who had not undergone the operation. This comparison produced liftle evidence for rhe positive impact of the surgery on parents’ perceptions of fheir children’s physical, personal, and social functioning.
Approximately most cases, this facial and body dren with these
1 out of every 800 babies is syndrome can be recognized features (Lemperle & Radu, features may be perceived
born with Down syndrome. In immediately by characteristic 1980). The appearance of chilas deviant. Individuals whose
The authors wish to thank Professor Reuven Feucrstein of the Hadassah-Wizo-Canada Rescarch Institute for his assistance. They also thank all the families who participated in this study and the “Yatcd” parents’ organization for their help and cooperation. Requests for reprints should be sent to Shlomo Kravew., Department of Psychology, Bar-km University, Ramat-Gan 52900, Israel.
145
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appearance is deviant are generally perceived as unattractive. In turn, this perception usually leads to negative expectations in areas of life not necessarily related to appearance. Richardson, Koller, and Katz (198.5) claim that “Atypical appearance can be a barrier to social intercourse, causing isolation, and maladaptive behavior, which may tip the judgement toward classifying a borderline child as retarded” (p. 476). Furthermore, Siperstein and Gottlieb (1977) report a study that showed that the less attractive individual was perceived and expected by other children to behave in a less desirable manner. When pictures of a child with Down syndrome were rated together with pictures of other children, the Down syndrome child was always rated as the least attractive. In two other studies, adults were asked to rate photographs of normal and atypical children. A severely mentally retarded child elicited more negative responses on a semantic differential than did a mildly mentally retarded child (English & Pallo, 1971), and children with various types of physical deformities or stigmata, including at least one with Down syndrome, were labeled mentally subnormal more often than were normalappearing children (Aloia, 1975). Since the mid-19th century, when Down (cited by Payne, 1965) described children with Down syndrome as “imitative humorous idiots,” a Down syndrome stereotype has existed (e.g., Rynders, 1982). The deviant appearance associated with Down syndrome, especially the facial appearance, may have contributed to this stereotype. Due to the central role that appearance may play in social relations, a German team of surgeons attempted to use facial plastic surgery to enhance the overall functioning of children with Down syndrome. This intervention was based on Longacre’s (1973) claim that the social relations of most people with facial transfigurement improve dramatically following surgical correction of the problem. The team also viewed the operation as a way to assist parents in promoting their children’s social and mental development and as a means of directly improving the children’s speech and eating behavior. The surgery, performed in keeping with each child’s specific needs, consists of the following corrections: (1) reduction of the tongue, (2) lifting of the sunken bridge of the nose, (3) effacing the epicanthal fold, (4) correction of the oblique lid axis, (5) augmentation of the chin, (6) repairing the hanging lower lip, and (7) augmentation of the flat jaw bones. The surgeons, Lemperle and Radu (1980) reported that all parents questioned expressed satisfaction with the results of the operation. The parents added that they repeatedly received compliments on the improvement in their children’s appearance and speech. This form of surgical intervention was first carried out in Israel in 1982 on 11 children. An initial follow-up study consisting of clinical interviews indicated that both the children and their parents were satisfied with the results of
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the surgery (Mintzker, 1982). No support was found for the psychoanalytic hypothesis offered by Belfer (1980) that the operation would be interpreted as an “attack” on the child, and no signs of “loss of identity” were discerned. Between 1982 and 1985, more than SO individuals underwent the operation (Mearig, 1985). Mearig (1985) has reviewed the empirical and ethical questions related to this kind of radical intervention. An extensive follow-up study of 50 individuals who underwent the operation was also carried out. In this follow-up study, parents, physicians, and teachers were asked to evaluate the quality of the specific and general structural and functional changes produced by the operation (Wexler, Peled, Rand, Mintzker, & Feuerstein, 1986). Although there was some disagreement between the parents and physicians regarding the specific impact of the surgery, parents, physicians, and teachers appeared to be highly satisfied with its results. However, the latter follow-up did not investigate the implications of the surgery for broad areas of the operated individuals’ personal and interpersonal functioning. It also did not control for the influence of expectations on evaluations. Although the operation is still being performed in Israel, few systematic controlled evaluations of its effectiveness have been undertaken. As Mearig (1985) points out, such evaluations are important because of the cost of the surgery and the emotional and physical strain that it imposes on the families involved. The purpose of the present study was to investigate parents’ perceptions of the physical, personal, and social functioning of their children with Down syndrome who had undergone plastic surgery in Israel. To control partially for parent expectations and aspirations, these perceptions were compared to those of a group of parents of similar children with Down syndrome who had not undergone surgery. Both groups of parents were also asked to evaluate the quality and quantity of any changes that might have occurred in these areas of functioning over the preceding year. This study tested the hypothesis that the functioning of the children who had undergone the operation would be perceived more positively than the functioning of the children who had not. Furthermore, it examined the hypothesis that the former children would be perceived as having improved their functioning to a greater degree than the latter. Feuerstein (1970) argues that people differ with regard to their attitudes to performance of persons who are mentally retarded. According to this argument, these attitudes can be placed along a continuum stretching from “passive accepting” to “active modifying.” Since parents who arrange for the operation may be characterized as “active modifying,” the present study also examined the parents’ attitudes toward the performance of mentally retarded children to determine whether differences in attitude confound any differences that might be uncovered between the children who had undergone the operation and those who had not.
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METHOD Subjects Forty-one Israeli Jewish families participated in this study. In each of the families, there was a child with Down syndrome. Subsequently, data collected from two of these families were not included in the present study’s analyses since they were incomplete. For the purpose of data analysis, the remaining 39 families were divided into two groups on the basis of whether their child had undergone plastic facial surgery. The children in 19 of the families had undergone this surgery between the Fall of 1982 and the Spring of 1983, and the other 20 had not. This study was conducted less than a year after surgery for all subjects. The following is a description of the control and operated groups. The average age of the children was 10.4 (SD = 3.85) and 8.9 (SD = 4.0) years, respectively. There were eight males in each group. For both groups the average number of children per family was approximately four. When birth order is categorized as first or second, third, and fourth or later, approximately a third of the children in both groups appeared in each category. Eleven (55%) of the parents in the control group and twelve (63%) in the operation group held high-status occupations. Eleven (55%) of the former families and eight (42%) of the latter had received professional counseling regarding their child. The 19 families with operated children were compared with the 20 families with children who had not undergone the operation on all of the above-mentioned variables. No statistically significant differences were uncovered between these groups on any of these variables. The above analyses indicated that the two groups of families were comparable on relevant demographic variables. The performance of the operation was contingent upon parental consent and the surgeon’s discretion, The majority of the operated children were referred by the HadassahWizo-Canada Research Institute. No data are currently available to account for the motivation underlying the referral of a family for the operation and for the decision to perform the operation. However, professional workers who work with both the families of the operated children and the families of the nonoperated children reported that these two groups of families and children did not significantly differ from each other.
Instruments Demographic questionnaire. This questionnaire was constructed to collect information pertaining to the families who participated in the study. It included questions concerning the number of children in the family, the children’s age, gender, place of birth, and birth order, and the parents’ age,
Surgery-Down
occupation, and education, sional counseling.
and whether
I49
Syndrome
the parents
had received
profes-
Adaptive Behavior Scale CABS). This scale was a modified version of the AAMD-Adaptive Behavior Scale (Nihira, Foster, Shellhaas, & Leland, 1974). It consists of items related to the various areas of functioning of individuals who are mentally retarded, emotionally maladjusted, or developmentally disabled. The ABS has two parts: Part A refers to the person’s skills and habits in 10 behavior domains; Part B refers to personality and behavior disorders in 14 behavior domains. In a number of studies, the ABS has been found reliable. The average test-retest reliability of the scale was .90 for Part A and .83 for Part B (Isett & Spreat, 1979). The average interrater reliability was .76 for Part A and .53 for Part B. The AAMD-ABS has been translated into Hebrew and is used by the Israel Ministry of Labor and Welfare. Since not all of the items from the original AAMD-ABS appeared relevant to the present study’s research questions and since the original scale was rather lengthy, the AAMD-ABS was shortened in the following manner. Five psychologists from Bar-Ilan University’s Psychology Department and the Hadassah-Wizo-Canada Research Institute selected items from the AAMD-ABS, which they thought would be likely to be affected by the surgery. Only those items upon which all of the five psychologists agreed were used in modifying the AAMD-ABS. The items selected represented the following functions: “Socialization,” “Withdrawal,” “Psychological Disturbance,” “Eating,” “Shopping Skills,” “Posture,” “Public Transportation, ” “Conversation,” “Initiating,” “Has Violent Temper Tantrums,” and “Has Unacceptable Oral Habits.” For each of the above areas of functioning containing more than one item, Pearson Product Moment correlations were calculated between all pairs of items. For all but one of these areas, the correlations were positive and sufficiently high to justify calculating a scale score for each area. The only exception was the “Socialization” area in which the intercorrelations were relatively low. To clarify the psychological meaning of this group of questions, principal component factor analysis with varimax orthogonal rotation was performed. This analysis produced two factors that explained 88 percent of the inter-item variance for this area. These factors, labeled “Sociability” and “Helpfulness” according to the content of the items with a factor loading of 0.40 or higher were treated as separate areas. Thus, the modified version of the AAMD-ABS included 12 measures, the 10 measures initially selected from the ABS together with the two “Socialization” measures produced by the factor analysis. Since the scale was modified, the reliability data for the original ABS scale may not apply to this shortened version.
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Perceived Change Questionnaire (PCQ). By means of this questionnaire, which was constructed specifically for this study, parents were requested to report any changes that had occurred in their children’s functioning during the year preceding the study. It included questions referring to changes in the following eight areas of functioning: eating behavior, speech, breathing and salivation, social behavior, parents’ perception of child’s appearance, child’s perception of own appearance, others’ perception of child’s appearance, and others’ reaction to child. The responses were rated on a five-point Likert scale, which ranged from “a large improvement” to “a large deterioration.” Cronbach’s alpha was calculated for the items in each of the eight areas of function assessed by the PCQ. The alpha coefficients for these areas ranged from 0.72 to 0.93. Since the three oral behaviors (eating behavior, speech, and breathing and salivation) were highly correlated (r = 0.82), they were combined into one overall oral behavior perceived change score. In addition, parents were asked about their attitudes toward the operation. Those parents whose children had not undergone surgery were asked whether they were considering it, and those whose children had were asked whether they would recommend it. Attitude toward Retarded Performance Questionnaire (ATRPQ). This scale was constructed especially for this study to check whether differences in the parents’ attitude toward affirmative action for children who are mentally retarded might confound other differences that might be uncovered between the two groups of parents. Fourteen dilemmas were constructed that could occur in such life areas as family, school, youth movement, and recreation. Four possible parental responses representing a continuum that stretched from “active modifying” to “passive accepting” (Feuerstein, 1970) were presented together with each of the dilemmas. The dilemmas and the responses to them were reviewed by the above-mentioned psychologists and were modified in keeping with their comments. The response categories associated with each dilemma were presented in a random order. Three items were dropped from the ATRPQ because of their low correlations with the total score. The homogeneity of the remaining 11 items as estimated by Cronbach’s alpha was 0.72. Procedure All families with a child with Down syndrome over 3 years of age, registered in the files of the Hadassah-Wizo-Canada Research Institute in Jerusalem, were contacted. This institute’s main function is assessment and treatment of children with cognitive dysfunctions. These files also indi-
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Syndrome
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cate whether the child had undergone the operation. Additional families were approached by contacting all available parents who appeared at the first annual meeting of “Yated,” an organization of parents of children with Down syndrome. Families with a child with Down syndrome under the age of 3 were not approached. The “Yated” families who participated in the study were also questioned as to whether their child with Down syndrome underwent the surgery. Thus, the research group consisted of individuals who, according to either the institute’s files or the parent reports, had undergone the operation. The control group consisted of individuals who, according to either these files or reports, had not been operated upon. Of the 35 families in the research group and the 26 families in the control group contacted, 20 (57%) and 21 (81%), respectively, agreed to participate in the study. We have no information regarding the motives for refusal. Approximately half were interviewed in person, and the questionnaires were filled out together with them. In most cases, both parents were present during the interview. The remainder answered the questionnaires on their own and returned them by mail. Comparable percentages of the research and control groups were interviewed in person. To examine the impact of the surgery on parents’ perceptions of the functioning of their child with Down syndrome, two one-way MANOVAs were carried out on two sets of dependent variables. For each of these analyses, the independent variable was the plastic surgery (yes, no). One of these analyses was carried out on the 12 modified AAMD-ABS items, whereas the second analysis examined the differences between the operated and nonoperated children on the six items of the Perceived Change Questionnaire. Because of the exploratory nature of this study, the groups were compared also by post-hoc t-tests on the individual items, even in the absence of an overall significant MANOVA. This was done in order to give other researchers leads in future assessments of this treatment.
RESULTS Table 1 presents the means and standard deviations of the two groups of parents’ responses to the modified ABS items. Table 2 depicts the means and standard deviations of the two groups of parents’ responses to the Perceived Change Questionnaire items and to the Attitude Toward Retarded Performance Questionnaire. For the six items of the PCQ, lower scores represent greater amounts of perceived change in functioning. In addition, the tables include the results of independent t-tests carried out on each of the questionnaire items and on the total score of the ATRP questionnaire.
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TABLE 1 Means, Standard Deviations, and I-tests for the Nonoperated and Operated Children’s Families on the 12 Modified ABS Itemsa Nonoperated N Eating Posture Conversation Initiative Outbursts of aggression Oral behavior Shopping skills Withdrawal Psychological disturbances Transportation Sociability Helpfulness
M
Group
Operated Group
SD
N
M
SD
I
P
19 19 19 19
3.72 7.11 1.26 2.26
0.89 1.05 1.10 0.87
-1.96 -1.44 -0.92 -0.20
0.06 0.15 0.37 0.84
20 20 20 19
3.06 6.60 l.CKl 2.2 1
1.18 1.14 0.65 0.71
20 20 20 20
0.70 6.90 1.15 1.07
0.80 0.91 1.26 1.02
19 19 18 19
0.2 1 1.26 1.64 1.19
0.54 0.73 I .35 1.07
-2.23 -1.37 -1.16 -0.38
0.03 0.18 0.23 0.71
20 20 20 20
1.09 0.20 1.81 3.90
1.29 0.41 0.59 0.74
19 19 19 19
0.87 0.37 2.00 4.05
0.67 0.50 0.68 0.86
0.67 -1.16 XI.94 -0.86
0.50 0.25 0.35 0.56
aHigher scores indicate more positive functioning,
with the exception of Outbursts
of aggression.
Table 1 reveals that the operated children’s performance tended to be perceived more positively than the performance of the nonoperated children in every area of functioning except for the Psychological Disturbance area. Although parents’ perceptions of the present status of their child’s “eating behavior” approached statistical significance (p < 0.06) and parents’ perceptions of their child’s “outbursts of aggression” actually were statistically significant, the overall MANOVA was not significant (F < 1). Perceived amounts of change in functioning that appear in Table 2 also seem to favor the operated children. Separate t-tests of the six PCQ measures showed statistically significant improvements in the parents’ perceptions of their child’s appearance (p < 0.01) and in the parents’ perceptions of improvement in others’ reactions to their child (p < 0.02). The overall MANOVA of these measures approached statistical significance (F = 3.32, df= 37, p < 0.10). The parents’ scores on the ATRPQ suggest that the parents of the operated children may be more inclined to encourage their mentally retarded child to become more involved in activities of everyday life than were the parents of the nonoperated children. This tendency approached statistical significance (t = -1.87, df= 37, p = 0.07). Twelve (69%) of the families of operated children would recommend the surgery highly, one would not recommend it at all, and six would recommend it with reservations. Eight (42%) of the families whose children had not undergone surgery were
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Syndrome
TABLE 2 Means, Standard Deviations, and t-tests for the Nonoperated and Operated Children’s Families on the Six PCQ Items and the ATRFQab Operated Group
Nonoperated Group N
M
SD
N
M
SD
t
P
-0.26
0.79
Oral behavior Perception of appearance Parents Child Others
20
2.38
0.53
19
2.42
0.35
20 20 20
2.82 2.05 2.37
0.60 0.82 1.06
19 18 19
2.01 1.89 2.10
0.51 0.90 0.81
4.17 0.58 0.86
0.0002 0.57 0.40
Others’ reaction to child
20
2.75
0.46
19
2.31
0.70
2.33
0.02
Social behavior
20
2.25
1.07
19
2.00
0.58
0.90
0.37
ATfW
20
2.71
0.59
19
3.01
0.37
-1.87
0.07
%ower scores indicate more perceived change on the PCQ items. bA higher score on the ATFWQ represents a stronger positive attitude toward affirmative for mentally retarded children.
action
either on a waiting list for the operation or held positive opinions about it. Of the remaining families, only one was not at all interested, while the rest either wanted more information or had not thought about it.
DISCUSSION This study attempted to evaluate one aspect of the effectiveness of plastic surgery for children with Down syndrome. This aspect was parents’ perceptions of the quality of their mentally disabled children’s functioning in a number of areas. These perceptions were measured by an adaptation of the ABS and a measure of perceived change in functioning designed specifically for this study. We hypothesized that if the operation was effective, the functioning of children who underwent surgery would have improved and would be perceived as such by the parents. The results provide little support for the operation’s effectiveness. The overall MANOVA carried out on each set of parent perceptions only approached statistical significance in the case of the PCQ measures and was not statistically significant for the revised ABS. However, individual exploratory posthoc comparisons revealed a few interesting differences. These differences were in areas that seem to be directly associated with the intended effects of the operation. Thus, the parents of operated children rated their children’s eating behavior more positively than did the parents
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of nonoperated children. Since one of the goals of plastic surgery is modifying the imbalance between the tongue and the mouth, this outcome may well be a result of the surgery. Alternatively, presurgery counseling may have led the parents to expect significant changes in this domain. The parents’ reports also indicated that the operated children emitted less aggressive behavior than did the nonoperated children. This difference could have resulted from the overall impact of the operation. Improved functioning and appearance might alleviate the frustration that children with Down syndrome may experience. Alternatively, the operated children might have been less aggressive to begin with. In addition, parents of children who had undergone the operation perceived more improvement in their children’s appearance and in differences in the manner in which others reacted to their children than did the parents of nonoperated children. These findings could be related to the abovedescribed differences in the present level of functioning. As noted above, improvement in appearance may reduce the stress that children with Down syndrome may experience and thus lower the frequency of their aggressive outbursts. The use of parents’ perceptions as an index of the effectiveness of an operation carried out on children may be criticized on the grounds that such an index may be overly sensitive to the influence of the self-fulfilling prophecy phenomenon (Rosenthal & Jacobson, 1968). Parents who undertook the physically and psychologically demanding task of arranging for the operation probably anticipated a positive change in their children’s functioning. This expectation could have produced perceptions of change even if such change actually did not occur. In anticipation of this criticism, the present study included both perceptions of level of functioning and perceptions of improvement in functioning. Despite this abovementioned attempt to control methodologically for parent expectations, the tendency for parents of the operated children to perceive certain areas of their children’s functioning more positively, uncovered by this study, may be attributed to the parents’ expectations. The difference between the two groups of parents on the Attitude Toward Retarded Performance Questionnaire provides some support for this possibility. Parents of the operated children tended toward a more positive attitude toward encouraging mentally handicapped children’s independence and community integration than did the parents of the nonoperated children. As a consequence of this more positive attitude, the former parents may have expected and, therefore, perceived more positive change in their children’s performance. The results of the present study are inconsistent with the results of Wexler et al.‘s (1986) follow-up study of this surgery. Wexler et al. (1986) reported that a large percentage of mothers and physicians said that the
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IS.5
operation produced positive changes in the operated individuals’ appearance and functioning. However, the perceptions of the parents who participated in the present study did not provide convincing evidence of the operation’s effectiveness. An examination of the two studies reveals a number of methodological differences. Wexler et al. used direct and specific questions about the operation’s effectiveness, whereas the present study was based on the assessment of perceptions of general functional status and changes in functioning. Wexler et al. did not use a comparison group, whereas this study did. Thus, the failure of the present study’s more indirect, general, and controlled investigation of the operation’s effectiveness should serve to qualify the more positive findings of the former follow-up. Increases in parent satisfaction have been considered sufficient for recommending the operation (Lemperle, 1986; Mearig, 1985). Both the present study and the former follow-up study used parent perceptions to evaluate the surgery’s contribution to improvement in their children’s appearance and performance. Yet, these studies produced different sets of results. Evidently, different formats for eliciting parent perceptions may tap qualitatively different perceptions. An evaluation of the surgery’s efficacy independent of the parents’ views is highly recommended. Decisions as to the desirability of the operation, which take into account parent perceptions and satisfaction, should weigh both the quality of the satisfaction that is being sought and the possibility of obtaining it by other means. Over 50 percent of the parents whose children had not undergone the operation were not committed to having it done at the time of the study. These parents might reasonably expect additional evidence as to the operation’s effectiveness before they submit themselves and their children to the emotional and physical strain it involves. REFERENCES Aloia, G. (1975). Effects of physical stigmata and labels on judgements of subnormality by preservice teachers. Menfal Retardation, 13, 17-21. Bclfer, K. L. (1980). Discussion: Facial plastic surgery in children with Down’s syndrome. Plasfic and Reconstructive Surgery, 66,343-344. English, R. D., & Pallo, D. A. (1971). Attitudes towards a photograph of a mildly and severely mentally retarded child. Training School Bulletin, 68.55-63. Feuerstein. R. (1970). A dynamic approach to the causation, prevention and alleviation of retarded performance. In H. C. Hayward (Ed.), Social cultural aspects of mental retardation (pp. 341-377). New York: Appleton-Century-Crofts. Isett, R. D., & Spreat, S. (1979). Test-retest and interrater reliability of the AAMD adaptive behavior scale. American Journal of Mental Deficiency, 84.93-95. Lemperle, G. (1986). Discussion: Rehabilitation of the face in patients with Down’s syndrome. Plastic and Reconstructive Surgery. 17,392-393. Lemperle, G., & Radu, D. (1980). Facial plastic surgery in children with Down’s syndrome. Plastic and Reconsrructive Surgery, 66, 337-342.
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Longacre, J. J. (1973). Rehabilitation of Ihe facially disfigured. Springfield, IL: Charles C. Thomas. Mearig, J. S. (1985). Facial surgery and an active modification approach for children with Down syndrome: Some psychological and ethical issues. Rehabilitarion Lilerafure. 46.72-76. Mintzker, Y. (1982). Research issues following facial surgery in children with Down’s syndrome. Unpublished manuscript, Israel Association of Mental Deficiency, Tel-Aviv, Israel. Nihira, K., Foster, R., Shellhaas, M., & Leland, H. (1974). AAMD adaplive behavior scale, 1974 revision. Washington, DC: American Association on Mental Deficiency. Payne, R. (1965). The century of “mongolism.” Journal of Mental Science, 11,89-92. Richardson, S. A., Keller, H., & Katz, M. (1985). Appearance and mental retardation: Some first steps in the development and application of a measure. American Journal of Menial Deficiency, 89,475-484. Rosenthal, R., & Jacobson, L. (1968). Pygmalion in the classroom: Teacher e*peclations and pupils’ intellectual development. New York: Holt, Rinehart and Winston. Rynders, J. E. (1982). Research on improving ihe social adaplation of children with Down’s syndrome. Unpublished manuscript, University of Minnesota, Special Education Program, Minneapolis, MN. Sipcrstein, G. N., & Gottlieb, J. (1977). Physical stigma and academic performance as factors affecting children’s first impressions of handicapped peers. American Journal of Mental Deficiency, 81,455-462. Wexler, M. R., Peled, I. J., Rand, Y., Mintzker, M. A., & Feucrstein, R. (1986). Rehabilitation of the face in patients with Down’s syndrome. Plastic and Reconstruclive Surgery, 77,383-393.