Fetal Alcohol Syndrome Disorder (FASD) is a range of medical and psychological conditions produced by exposure to alcohol before birth. Alcohol acts as a neuro-behavioral agent that interrupts or alters the embryo’s normal development with the potential for a wide-ranging and individually variable compromise of the Central Nervous System. Based on research and my own clinical experience, children with this condition are presented in significant numbers among international adoptees, particularly in those from Eastern Europe. FASD is found in population born in the US as well, but the IA children may experience additional and very specific difficulties, described below.
Primary disability and diagnosis
The primary disability of a FASD child is rooted in the organic impairment due to prenatal alcohol exposure and revealed in certain dismorphic facial features, physical characteristics of growth, medical status of inner organs (e.g.: heart) , sensory processing, weakness of the Central Nervous System (CNS), etc.
The diagnostic procedure for FASD is a complicated and multifaceted process; one of the elements of this process is the analysis of facial features of a child. But in children from the republics of former Soviet Union the resemblance of FASD dysmorphology 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., especially when we have no documented evidence of the ethnicity of the parent(s).
Another element of diagnostic analysis - retardation in growth, revealed in below the 10th percentile height and weight, is typical for FASD children in general; but in IA children it can be due to malnourishment rather than FASD. Thus, it’s known that after living for a year in the US, and having a dramatically changed diet/eating habits, IA children can reach 25 to 50 percentile in weight and height.
On the other hand, international adoptees without FASD conditions may remain below the 10th percentile in height, weight, and head circumference due to their genetic make-up and/or their ethnicity, which is common in children adopted from certain regions of Russia and Kazakhstan.
The next element of diagnostic analysis - the presence of developmental delays noticeable in cognitive, emotional, and behavioral domains and usually attributed to FASD condition in population at large, may be induced by the extreme deprivation and institutionalization, or may be mediated by institutional upbringing, often to the extent that it is practically impossible to separate the causes of delays.
A significant predictor of FASD in a child is a documented evidence of the mother’s drinking habits. But in the majority of FASD cases in international adoptees, no unambiguous evidence of the mother’s drinking is usually available; only a small minority of cases in our data bank contains a documented evidence of mother’s excessive drinking during pregnancy (e.g.; mother is a registered alcoholic subjected to mandatory treatment in a narcological clinic).
Characteristics of “secondary” disabilities
The term “secondary” disability refers to distortions of higher psychological functions due to social factors: organic impairment prevents children with FASD from mastering cognitive, social, and academic skills at an age-appropriate rate and level.
Progressive divergence from social and natural milestones of development leads to social deprivation (in the form of exclusion, humiliation, segregation, etc.) as the 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 children with FASD.
From this perspective, many symptoms of this handicapping condition (e.g.: behavioral infantilism or primitive 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 the course of development and may lead to compensation and rehabilitation or to aggravation of the primary disability. If not treated, FASD 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.
The secondary disabilities are common for all children with FASD, however, children adopted internationally had been exposed to the most adverse social environment that reinforced the emergence of secondary disabilities. While children with FASD born in this country at least have a chance to be exposed to remediation at a very early age, children with FASD adopted internationally typically do not have it. Therefore, adoptive parents and mental health agencies have to deal not only with primary organic impairment, but also with acquired and enhanced secondary disabilities, often combined with the distinct institutional behavior traits. Moreover, the secondary disability can be boosted by the loss of native language and difficulties in social adjustment to foreign culture.
Due to the 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. Immature self-regulation of cognitive and behavioral aspects of life in the IA children suffering from FASD is determined by the specificity of brain damage related to alcohol; however, we should not underestimate social/cultural factors in developing this disability.
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 the IA children with FASD it’s a real predicament: this system can only reinforce negative features of a neurological impairment of their Central Nervous System, taking these FASD symptoms to the extremes.
Atypical cognitive and educational profile of FASD in IA children
It’s known that in population at large a significant number of FASD children have mental retardation (over 40%). In IA population the percentage of children with MR is unknown but, based on some indirect evidence, it is significantly lower than in population with FASD conditions at large. Thus, in our sample of international adoptees with unambiguous FASD conditions, the number of children with MR is only one percent.
This may be explained by the selection process: children with known MR condition are less likely to be chosen for an adoption. In the majority of IA children with FASD conditions general cognitive potential is in the Low Average to Borderline or in Low Average to Average range. The research literature points at slow processing speed, limited attention, incapacitated short-term (working memory), and difficulties with high-order reasoning of individuals with FASD.
Our data for IA children, confirms, in general, these well-established findings regarding cognitive ability of children with FASD. However, based on 82 combined developmental, neuropsychological and educations assessments of international adoptees diagnosed with FASD at the BGCenter, we found that the composite cognitive “profile” of these children, obtained by major standardized tests batteries, is very diverse, complex, and subject to individual differences in no less degree than in population at large. Careful analysis of the clinical data allows us to make the following remarks on the specificity of cognitive functioning of IA children afflicted with FASD:
IA children with FASD can show close to age expectations processing speed, attentional capacities, and functional working memory (sometimes with the amazingly high scores on the standardized tests) when working in a very structured situation of individual testing and being given simple tests on processing speed, attention, and short-term memory.
However, being given tests where self-regulation of cognitive processes was needed in goal-directed systematic performance, their scores went down almost uniformly. Thus, IA children with FASD demonstrated individual patterns and types of attention that indicated immature ability to regulate (allocate, sustain, shift, divide, sustain, etc.) attention at the level expected for their age.
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 FASD. In other words, the actual reason for a limitation in cognitive functioning could be found outside of cognition itself – rather in the limited ability to self-regulate these processes.
The dynamic of cognitive development in IA children with FASD also has it specificity. A number of longitudinal research reports (the same individuals were followed for 6 to 20 years) pointed out that individuals with FASD tend to show lower scores on their IQ tests and lower academic achievements as they progress through the school years into their early adulthood. The researchers used the term “deterioration” describing this phenomenon.
Our data suggests a different explanation. Indeed, about half of our longitudinal group (8 cases of internationally adopted children with FASD that we tested at least 2 times within the last 9 years) have consistently shown lower and lower scores on their cognitive and academic testing with the years. I would not call this deterioration, however. The word deterioration means that a person had attained a certain level of functioning and after this starts losing it either suddenly (e.g.: traumatic brain injury) or gradually (e.g.: Alzheimer).
What happens to IA children with FASD is neither of the above. In fact, they have been progressing, but at a slower pace than their peers at large, and as the result of this slower pace the impression of deterioration may emerge. The individuals with FASD condition are known to have problems with high-order (abstract) reasoning. In early elementary school this problem is not so obvious and they can make it through those years without noticeable differences. After the age of 12, however, both cognitive tests and academic assignments rely more and more heavily on the abstract thinking.
At this point the students with FASD begin to fall significantly behind the norms designed for their non-handicapped peers. Cognitive abilities in the IA children with FASD present a wide range, but still the majority of them are in the Low Average/Borderline range with a few in the Average/High Average. Those who were in the Low Average range start responding less proficiently to the tests (both academic and psychological) and move into Borderline range and even further to the Mentally Deficient range. It may produce an impression of “deterioration”, but in fact it’s a specific dynamic of cognitive/academic functioning typical for individuals with FASD condition: the pace of cognitive development does not conform to societal expectations for a certain age group.
One interesting and, to the best of my knowledge, not previously discussed issue is what could be called "the reverse discrepancy formula" phenomenon. Thus, we found that in the majority of children with FASD in our sample, their achievement scores were higher than cognitive scores. In other words, they performed academically better than could be predicted based on their cognitive performance. Of course, one may argue that cognitive tests are not a good predictor of learning ability for children with FASD. I rather believe that here we deal with a strong support in the family and the remedial efforts at school, focused on academic achievements vs. cognitive skills.
Other explanations are possible, but the bottom line is that the IA children with FASD can do better in school than it may be expected based on their IQ scores. In other words, a cognitive profile per-se may not be a reliable and valid predictor of academic functioning of IA children suffering from FASD.
Although it has not been proven in research yet, it is our belief that the majority of IA children with FASD are capable to attaining what is called "functional literacy"- literacy skills on the 6th grade level. This level of literacy allows them to master significant number of jobs (unfortunately this number is shrinking with technological progress). The good news is that when individuals with FASD join the workforce, their weaknesses in the abstract thinking (but not in the immature self-regulation of behavior) are not as obvious as in school, and they can get by with certain jobs.
Still another specific factor in cognitive, academic and social/emotional functioning of IA children with FASD condition is a phenomenon, not known in population at large: it’s a rapid first language loss and a unique pattern of the English language learning. 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 to come. 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 FASD this process is even more complex: it manifests itself in numerous learning problems, showcasing cognitive weaknesses 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 FASD due to this impairment, but in IA children this weakness is magnified by the 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 IA peers without FASD. This leads to numerous social and academic problems that should be properly understood and addressed by educational means.
Social/emotional factor in FASD IA children
Social/emotional domain is, probably, the most distinctive indicator of FASD in IA children and it should be the area of most intense and focused remediation. Children with FASD, as a group, possess many positive social/emotional characteristics: they are generally cheerful, friendly, caring and compassionate to little children and animals. They are energetic and often are good athletes; they are enthusiastic and engaging participants in social events, they are fluent verbally, often charming in their social interactions, particular with strangers.
At the same time, children with FASD conditions are known to lack behavior control, prone to misinterpret social conventions, and/or poorly understand cause-effect relationships. They may commit acts that are not appropriate for their age and for the norms and laws of the society. They are prone to being overwhelmed by feelings and impulses which they are not able to control. They may occasionally violate school rules and regulations and therefore face disciplinary actions, including suspension and expulsion. They may require more control and supervision than other children of their age.
Children with FAS are often socially immature compared to their peers. They may misinterpret other people’ emotions and they may exhibit the wrong emotion for the situation. Often they do not realize the implications of their actions for others. At all ages, many children with FAS are overly friendly, which may bring an issue of security and vulnerability to child predators. Their desire to be accepted by their peers and their difficulty making good choices means their peers or adults can easily provoke them into inappropriate behavior: at all ages these children require greater supervision than their peers.
The goal of family-based upbringing and school-based education for IA children with FASD is to teach them to take responsibility and self-regulate their behavior and emotions. This is not something that anyone can impose on these children; it comes about only through a long process of maturation and learning. The primary disability of FASD makes taking responsibility and self-regulating goal-directed behavior particularly difficult for them. In the long run, good judgment, social skills, and adaptive skills are the most important preparations for independent living. Timely and correct diagnosis of FASD conditions in IA children is crucial because it leads to an earlier and appropriate intervention that may reduce the psychological and social manifestations of this disorder.
The first line of defense for adoptive parents with FASD children is their school-based educational (social, and academic) support and psychological services. A parent may ask a family physician for pharmacological intervention for specific symptoms (e.g. impulsivity), if the need arises, but still the main partners in remediation should be a teacher and a psychologist. The educational and therapeutic interventions are the only known means of rehabilitation for FASD condition. Children with FASD/FAE qualify for special education services under the category "Other Health Impaired," "Learning Disabled," and some other classifications. Some of them may need as little as Resource Room support and school-based counseling. Some may need a self-contained placement and a number of services, including speech, OT, and specialized counseling.
At different age levels FASD has somewhat different manifestations, but what stays with FASD children at any age, are behavior problems (ranging from restlessness/inattentiveness to serious behavior conduct disorder). Different degrees of "learning disability" are found in many children diagnosed with FASD/FAE. A psychologist with a cognitive-behavioral background may help parents manage a FASD child at home (through consultation and/or therapy, if needed) and monitor their progress at school. Creating a supportive and remedial system for these children at home and at school will help them mature and master self-regulation of their behavior. In general, FASD in international adoptees presents an amplified picture of all typical for this diagnosis symptoms. 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 FASD child.
Boris Gindis, PhD, is chief psychologist at the Center for Cognitive-Developmental Assessment and Remediation ( www.bgcenter.com), in Nanuet, NY, and the principal instructor at the BGCenter Online School. He can be contacted at firstname.lastname@example.org.