The Psychologist And Congenital Physical Anomalies
Bernard Hebert, B.A. L.Ps
The role of a psychologist at the Rehabilitation Institute of Montreal is as diversified as the types of handicaps treated there. These range from severe neurological lesions in older persons to the relatively less crippling congenital limb malformations in very young children; thus the psychologist's activities relate to or draw upon the fields of genetic and developmental psychology, clinical psychology, school and vocational guidance, and reorientation.
In school and vocational guidance, for instance, the psychologist must not only be aware of the appropriate level of functioning, but also of the ways in which emotional disturbances may impede normal learning processes. He must be able to assess possible diffuse brain lesions, which may not be otherwise apparent. Moreover, he must be capable of grasping the effects of physical limitations upon the deeper layers of personality; otherwise his evaluation may not be as thorough as needed.
At the time when the thalidomide children were being treated at the Institute, the psychological staff consisted of one full-time psychologist (the writer), one consultant psychologist, and three research assistants, whether dealing with babies with congenital malformations or older hemiplegic victims of cerebrovascular accidents, the staff psychologists use current psychological techniques to assess mental potential, functioning, and deterioration. They also assess personality defects and resources through projective tests, interviews, observations, and in many instances short- or long-term counseling, either with the patients themselves or with their parents.
Each Child Should Be Seen
We believe that each child amputee should be seen by the psychologist, if only for preventive measures. Obviously not all children or all parents suffer from deep-seated personality disturbances; in fact, experience has shown that in many cases children and parents feel more threatened by treatments, prosthetic fittings, or separation than they do by the physical limitations per se. Unfortunately, however, the demand frequently outnumbers the availability of staff, so that only those who manifest emotional symptoms or whose parents are thought to be either too overprotective or overanxious are referred. Similarly, it is not always possible to offer regular therapeutic interviews to young patients who need them.
Children and parents who have been referred to the psychologist, even if they are not regularly followed, are invited to meet with him each time they visit the Institute for prosthetic adjustment or for a routine examination. Some of these young patients have been known to the staff psychologists for more than six or seven years, and many have been helped to meet the crises which occur to any individual at various stages of his development, but which are often felt more intensely by handicapped individuals.
Since the number of interviews is limited, the psychologist's aim is to provide as much support as possible to the parents, and to try to help them to perceive the handicap in its proper objective perspective. Parents and children are helped to minimize the tendency to deny the handicap and are guided toward some form of gratifying compensation. The psychologist, through his own assessment and the observations of other members of the team, must strive to discover the patient's assets and resources and to help him capitalize upon them.
Parents of patients suffering from various crippling conditions- traumatic, acquired, or congenital- are quite similar in many respects. Notwithstanding differences in socioeconomic levels, intelligence, or capacity to relate to professionals at the Institute, parents suffer or have suffered grief and intense guilt feelings, and they tend either to overprotect the child or to encourage overcompensation. All tend to project their feelings on various persons responsible for the child's habilitation or, later on, his education. All are deeply concerned about the patient's future-about his ability to engage in studies later on, in rewarding work, or even in marriage. Some even foresee, quite early in the life of the patient, difficulties in integrating into a peer group, especially during adolescence. This is particularly true of mothers of young daughters, who fear rejection by the members of the opposite sex and even a total inability to find a suitable life companion.
As is apparent, the psychologist's role necessarily includes evaluation of both parents and children. It is essential that at least the first interview be conducted with the parents, not only to arrive at an objective evaluation of the child, but also to gather a clear picture of the environment in which the child has been reared. Although many details may be obtained from other members of the team, it is felt that the best report cannot always convey the emotional tone and the flavor that a direct interview and/or personal contacts may yield.
On the basis of experience and numerous clinic assessments of patients with congenital anomalies of the limbs, certain conclusions were reached. These conclusions were validated in a study undertaken two years ago by the Institute staff among 41 patients from 2 to 46 years of age who had been treated at least once at the Institute during the previous ten years. A full report on this study appeared in the July 18, 1964 issue of The Canadian Medical Association Journal. Much of the data was offered by the parents or the patients themselves in retrospect, so that many details had lost their traumatic impact and emotional flavor. Nevertheless, the histories had so many similarities and the life experiences were so consistent in their quality and nature that the study results seemed to have some general application, even if they were scientifically valid only for the population of the research. Moreover, the findings of the research project on thalidomide children (see pages 3 and 8), which was conducted more systematically than the study to which we are referring, supported these conclusions, at least for the very young age group. Some of the findings are reported below.
It was found that intellectual abilities ranged from low-average to superior intelligence, the mean intelligence quotient being 104.5. No correlation was found between intelligence and severity of the handicap, or between intelligence and psychological maladjustment, if present.
Well-adjusted subjects, no matter how severe their physical limitations, managed to integrate into the school population with minimal difficulties if they were living in a rural community and attended their village school, since they had already established friendly relations with their classmates in the preschool years. Difficulties appeared, however, with relatively greater intensity in children who had to integrate into new social or school groups, as was the case of those living in a semi-urban or urban community. Only one child, with a lower-extremity amelia, attended one of the two Montreal schools for crippled children. The other school-age subjects were neither so handicapped nor so limited in their activities as to preclude attendance at regular schools.
The study revealed that, contrary to all expectations, congenitally malformed children of normal or superior intelligence developed an early and gratifying curiosity about their environment, which they managed to explore almost as adequately as norihandicapped children. They used whatever functions their deficient limbs allowed, or adequately compensated with the nondisabled extremities. Success or failure in their attempts to understand their world and to develop and master motor activities was determined not so much by their physical limitations as by the more or less anxious and overprotective attitude of the mother.
No major emotional disorders (psychoses or psychoneuroses) were found in any of the subjects of the research, even in the more severely disabled, except perhaps in one adolescent who had delinquent tendencies. However, the family background and social environment were believed to be responsible for this boy's behavior, the handicap being used as a rationalization to justify antisocial acting out.
Parental Attitudes Crucial
However, many of the children suffered from neurotic conflicts or character defects of the same nature as those found in nonhandicapped persons. Conflicts were always conditioned by parental attitudes during the very early years of life and specifically by the mother-child relationship, which directly influenced the character structure of the subject. The child's congenital deformities or absent limbs intensified the mother's emotional reactions toward him, but the intensity and quality of these reactions were in keeping with her own character structure.
Especially among children with less crippling disabilities, the body image developed as normally as in nonhandicapped children. No severe or marked distortions of the body schema were found during the first years of life. Anxiety became more intense with the onset of the latency period and reached a peak in early adolescence. Anxiety and related emotional conflicts were almost always invested in the abnormal extremity.
Children whose parents were least affected by the presence of a congenital limb defect adjusted to the use of a prosthesis with comparative ease, while children whose mothers had a hysterical personality with strong oral components hardly ever accepted their handicap. These latter found it much more difficult to adjust to the presence of any kind of prosthesis, even when it was provided at an early age. Yet in general, early fitting helped the child to meet, at the right time, the challenges of each new step of motor development.
Further Research Needed
Most scientific literature has focused its efforts on the mother-child relationship, unfortunately overlooking the father. It is felt that this area should be more thoroughly explored. It would also be of considerable interest to find out how the next older sibling reacts, not only to the baby with malformed extremities but to the whole emotional climate in which he is suddenly immersed. No systematic study of the brother or sister of the crippled child has been undertaken. Moreover, staff psychologists have rarely offered to see "the other child," even if the need may have been apparent from comments made by the parents. If staff and time permit, the day may come when the total family of the handicapped child will be assessed and supported.
Bernard Hebert, B.A. L.Ps is Head of Psychology and Guidance Sections Rehabilitation Institute of Montreal Montreal, Quebec