Understanding Your Child’s Medical Report: Oligophrenia
About six years ago I was consulted regarding a recently adopted 6-year-old boy from the former Soviet Union. His medical record included "oligophrenia" resulting in "significant delays in psychological and language development". My findings were that the boy was a basically normal child (with some relatively mild and correctable weakness in language and grapho-motor skills) and by no means fitting the image of a developmentally delayed/mentally retarded person. His adoptive parents, who also perceived the boy as non-handicapped, asked for an independent psychoeducational assessment of the child "just to be sure". The parents explained to me that physical or mental handicaps must be indicated in the children’s medical documentation as a precondition of their adoption by foreigners - that was a Russian law at the time! It was my first personal experience with the confusion about psychological diagnoses in medical documentation from Russia.
The question that arises for many actual and prospective adoptive parents is: to what degree Russian diagnoses can be trusted in the medical documentation of the adopted or referred children. I would like to discuss just one such diagnosis, "oligophrenia". First, I will describe the procedure for arriving at this diagnosis as it "should be", that is how it appears in Russian medical and psychological manuals and textbooks.
The term "oligophrenia" (congenital mental retardation) is described as an impairment of all cognitive functions, without a progressive course, due to pervasive organic injury of the hemispheric structure Severity levels are: debils (mild retardation), imbecils (moderate), and idiots (profound). There is a further classification into excitable and inhibited types (V. Davydov, at al, Eds., Desk Reference Dictionary for Psychologists, Moscow, 1983, pp. 231-232).
Identification of children with mental retardation in Russia is different in many ways from that in the United States. The basic methods are medical examinations and observations of "meaningful" activities (e. g,: play, peer interaction, learning). The medical examination is provided by a pediatrician often with a consultation of a neurologist or other relevant medical specialists. The observation is provided by a "defectologist" who is a special education teacher with some background in school psychology and abnormal psychology. Observation is based on the empirically constructed "Programs of development" (for each year of life). These are basically expectations of what an average child should be capable of doing at each age level. These programs are very much akin to the Brigance Diagnostic Inventory of Early Child Development widely used in this country. In some cases with older children (6 years and up) the child's cognitive development may be evaluated by using methods closely resembling those called "dynamic assessment" in the USA. These measurements may appear similar to our tests (e.g.: Matrices or Block Design), but they are not standardized and during an evaluation the stress is placed on certain qualitative indicators, such as cognitive strategies employed by the child, type and character of mistakes, ability to benefit from the help provided by the examiner, and emotional reactions to success and failure. Results of these evaluations are not expressed in numbers, but in a description of functioning. No IQ tests are used in the identification of different levels of mental retardation. On some occasions a clinical psychologist may be asked to contribute. However, unlike in American practice, a psychological evaluation in Russia is considered to be an auxiliary to a general medico-pedagogical procedure and no more than a means of differential diagnosis in some questionable cases. The use of exclusively qualitative criteria makes evaluation from an American point of view rather vague, and allows for subjective interpretation.
Results of the evaluations are summarized in a report usually composed and signed by a medical doctor, who is considered to be the leading specialist. A report usually contains a summary of a child’s developmental history ("istoria razvitia rebenka"). In this history, previous examinations are cited along with examples of primary developmental delays (that is, organically-based abnormalities) and secondary developmental delays (social and learning problems) in comparison with an average peer. All histories start with birth-related data (e.g. Apgar score) and/or status at the time of leaving the birth ward. It is to be noted that the diagnosis of oligophrenia is never done at birth (even in the case of Down’s Syndrome). It is rarely done earlier than 18 months of age. If there are alarming indications of brain malfunctioning (e.g. dysmorphic features of the body, sluggish reflexes, Apgar score below 6, etc.), another label is usually given, namely, perinatal encephalopathy, which is, indeed, a catchall term describing a general weakness of the central nervous system. (Sometimes a similar diagnosis infantile cerebral paralysis, is given). Even later in life the diagnosis of oligophrenia is not given easily, at least according to a textbook published in 1986 (B.V. Zeigarnik, Abnormal Psychology, Moscow, MGU Publisher). In a situation where organically-based impairment is not evident, but the child demonstrates either global (undifferentiated) developmental delay or a domain-specific (e.g. language) delay, professionals in Russia tend to use the term developmentally backward children, general developmental delay, or delays in psychological and language development rather than oligophrenia.
What I described above is the ideal procedure of arriving at a diagnosis, given by a team of professionals on the basis of different qualitative exams and observations. In real life, I understand, there are significant deviations from this standard routine due a shortage of staff, work overload, unscrupulous practices, prejudices, or direct falsification, as in the case mentioned above. In my opinion, this is the main source of misdiagnosis, not the procedure itself. Of course, there is a subjective element in the processes of evaluation described above which may lead to "false positives", but the same may be found in the so-called "standardized" assessment done in the US. I have heard from more than one adoptive parent that their children diagnosed with oligophrenia are doing well and are even bright. I also came across such a situation as in the case mentioned above. On the other hand, in most of the cases I was personally consulted on, oligophrenia was confirmed as either mental retardation or severe learning disability. The bottom line is that this diagnosis should be taken seriously, but not as the final say.
For those seeking more information on the subject of "oligophrenia" I would recommend the following publications:
Gindis, B. (1988). Children with Mental Retardation in the Soviet Union. Mental Retardation, Vol. 26/6, 381-384.
W.O. McCagg & L. Siegelbaum, Eds. (1989). The Disabled in the Soviet Union. Pittsburgh, PA: University of Pittsburgh Press.