An Alcohol-Related Neuro-developmental Disorder (ARND) - is a well-known and well-researched affliction. The extreme degree of this disorder is commonly known as FAS - Fetal Alcohol Syndrome. The specificity of FAS in post-institutional children adopted internationally from Eastern Europe (mostly from the republics of former Soviet Union), is much less researched and less known and is the subject of this article. It is based on my own clinical experience working with international adoptees (IA) since 1992 at the BGCenter. In the database of our center there are over 80 clinical cases of adopted children diagnosed with a different degree of ARND, who went through a comprehensive neuropsychological assessment between 2000 and 2007. Over 20% of these children were repeatedly evaluated over the years to monitor the dynamic of their development; they constitute the so-called longitudinal cases. My observations and commentary are based on these data.
Specificity of FAS in IA children in comparison to FAS children at large
FAS in IA children presents specific difficulties with diagnosis; characteristics of the “secondary disabilities” (social consequences of child’s primary neurological impairment) are more extreme; an abrupt native language loss by an IA child after the adoption accelerates and amplifies typical FAS symptoms; IA children suffering from FAS seem to have a certain cognitive profile in comparison with FAS population at large.
Difficulties with diagnosis
Facial features typical for FAS children in adoptees from the republics of former Soviet Union may be deceiving: a child may have facial features resembling FAS dysmorphology, which in fact can be explained by the ethnic origin (e.g.: Kalmyk or Kazakh nations). It takes special cultural awareness and clinical experience to properly interpret such facial features as smooth philtrum, epicanthal folds, widely spaced eyes, flat midface, short upturned nose, thin upper lip, etc. in these children, especially when we have no documented evidence of the ethnicity of the parent(s).
Retardation in growth revealed in below 10% height and weigh, typical for FAS children in general, in IA children can be due to malnourishment rather than FAS. On the other hand, it’s known that after being for more than a year in the US, and thus dramatically changing their diet and eating habits, IA children can reach 25 to 50 percentile either in weight or height, or both.
Lack of information about pre-natal exposure to alcohol in IA: in the majority of FAS cases registered in our database no unambiguous evidence of the mother’s drinking was available.
Characteristics of “secondary disabilities” are more pronounced
A primary disability is an organic impairment due to pre-natal alcohol exposure. A secondary disability refers to distortions of higher psychological functions due to social factors: organic impairment prevents children with FAS from mastering cognitive, social, and academic skills at a proper rate and on an age-appropriate level. Progressive divergence in social and natural development leads to social deprivation (in forms of exclusion, humiliation, segregation, etc.) as a society's response to a child's organic impairment. This, in turn, adversely affects the whole developmental process and leads to the emergence of delays and deficiencies that are not directly related to organic impairment, but rather to societal treatment of the children with FAS. From this perspective, many symptoms of this handicapping condition (e.g.: behavioral infantilism or primitivism of emotional reactions) are considered to be secondary defects, acquired in the process of social interaction. It is the child's social milieu, not the organic impairment per se that modifies a course of development and may lead to compensation and rehabilitation or to aggravation of primary disability.
If not treated, FAS may lead to such secondary disabilities as emotional/behavioral disorders (e.g.: PTSD, depression or conduct disorder), disrupted formal schooling due to behavior problems, violation of the law (from shoplifting to crimes against individuals and property, to promiscuity), and alcohol/substance abuse. International adoptees with FAS before adoption had been exposed to the most adverse social environment that reinforced the emergence of secondary disabilities. Adoptive parents now have to deal not only with primary organic impairment, but also with acquired secondary disabilities, often combined with post-institutionalized behavior syndrome. Moreover, the secondary disability can be boosted by the loss of native language and difficulties in social adjustment to foreign culture. By nature of total social/cultural change related to international adoption, the secondary disabilities in IA children are more pronounced and must be clearly recognized and fully addressed by adoptive parents and society at large.
Effects of an abrupt native language loss after the adoption
Abrupt language attrition and a specific dynamic of the new (English) language learning are typical for all international adoptees. Their first language is not functional any more within the first several months and the new language, especially its cognitive/academic aspect, will not be fully functional for several years. Such situation normally leads to regression in behavior because language has to regulate it, but it simply is not there at the moment. In children with FAS this process is even more complex: it manifests itself in numerous learning problems, showcasing cognitive weaknesses typical for FAS and amplifying emotional and behavioral issues to the extreme. All three major functions of language: communication, behavior regulation, and means of cognitive operations (thinking) are weaker in individuals with FAS by the nature of this brain impairment. In international adoptees this weakness is doubled with the situation of abrupt native language attrition and slow acquisition of their new language. The native-like mastery of the language may not be available for them for much longer time than for their fellow IA peers without FAS. This leads to numerous social and academic problems.
Atypical cognitive profile and executive functions
It is known that a significant number of FAS children have mental retardation (MR). In IA population the percent of children with MR is not known. In our sample only one child with FAS was diagnosed with mental retardation; and general cognitive potential of the rest was in the Low Average to Average range which may be explained by the selection process: MR children are less likely to be chosen for an adoption. Slow processing speed, limited attention, and incapacitated short-term and working memory are considered a “trade-mark” of cognitive profile of individuals with FAS.
Our data for IA children may contradict some well-established notions regarding cognitive ability of children having FAS. Our data showed that in IA children the picture is much more complex and the actual reason for limitation in cognitive functioning could be found outside of cognition per se - in limited ability to self-regulate cognitive processes. During a comprehensive neuropsychological testing the children in our group showed close to age expectation processing speed, attentional capacities, and functional working memory (sometimes with the amazingly high scores on the standardized tests). Being given simple tests on processing speed, attention, and memory, internationally adopted children with FAS were able to perform on the average level and above. Being given tests where self-regulation of cognitive processes was needed in goal-directed systematic performance, their achievements went down almost uniformly. Thus, IA children with FAS demonstrated individual patterns and types of attention (e.g. sustained attention vs. divided attention) that indicated immature ability to regulate (allocate, sustain, shift, divide) attention at the level expected for their age. Their limited attentional capacity negatively affects their cognitive effectiveness. Limited and immature executive functions (ability to self-regulate cognitive processes, as well as emotions and behavior) constitute the core deficiency of cognitive limitations in IA children with FAS.
Immature self-regulation is determined by the specificity of the brain damage related to alcohol; however, we should not underestimate social/cultural factors in developing this ability. A lack of adult-mediated learning, modeling, and opportunity to imitate and practice self-regulation in an institutional setting, as well as inadequate remedial efforts after the adoption may substantially aggravate the situation. Institutions with a strict system of regulatory rules are no place for independent decisions and acts of a child. But for IA children with FAS it’s a real predicament: this system can only reinforce negative features of a neurological impairment of their Central Nervous System, taking these FAS symptoms to the extremes. In general, FAS in international adoptees presents an amplified picture of typical for this condition symptoms. The adoptive parents need to be aware of them, adjust their expectations for an afflicted child, and be prepared for an intensive, comprehensive (family, school, and community), and focused remedial work with their FAS child.
Dr. Boris Gindis is a child psychologist specializing in psycho-educational issues of older internationally adopted children. He is chief psychologist at the Center for Cognitive-Developmental Assessment and Remediation, the lead instructor at Bgcenter Online School, the author of many publications on international adoption issues and frequent presenter at conferences and workshops. firstname.lastname@example.org www.bgcenter.com