Institutional Autism and the adopted child from Russia
Many children who are available for international adoption have either been placed in hospital-run orphanage or a classic institutional care setting for a multitude of reasons. These reasons can range from illness or untimely deaths of biological parents, to the parents' inability to care for the child’s basic needs necessary for survival. Over the past 15 years there has been a dramatic rise in the number of children who are internationally adopted and a majority of these children have been raised in an institutional care facility.
In countries from the Eastern European block such as Russia, Romania, Ukraine and Moldova, children are still being placed into orphanages at an alarming rate. Reasons for abandonment stem from the fact that since the fall of the Communism, democracy and freedom have left many people poverty stricken and homeless. The lower socioeconomic class no longer has the social support of the government to help with their survival. Because of the poor economic situations of these people, families are no longer able to care for the medical, physical and psychological needs of their young. Families that are condemned to a life of poverty find orphanages to be the only viable alternative that their children have for survival and maybe even a future. Strange as this may sound it does occur all too frequently. Hospital-based institutions are still state-run facilities with little or no resources. Children who have any type of medical condition (even minor problems) are placed in institutions, which also house patients with the more severe and sometimes neuropsychiatric conditions that no child should ever be exposed to. Children with more complicated or chronic medical conditions (such as blood disorders; infectious disease, congenital malformations and classic autism) are doomed to a forgotten life behind closed cold walls of the institutions.
The biggest problem that I personally have with the institutional setting is medical diagnoses that are given to these children. These diagnoses often are false, exaggerated and unfortunately sometimes very real. The disparity to the severity of the medical problems found in these children is is sometimes incomprehensible. They mix the severely mentally retarded, autistic, and handicapped patients with the relatively normal child who is abandoned, with mild developmental delay or the child who required minor surgery that is unable to acquire the procedure in order to lead a normal and healthy life.. Unfortunately, once a child was placed in a orphanage, that label follows the child for years, especially in countries like communist Romania during the 1980s. These children were fated to remain there for a life without appropriate medical care or even the possibility of having a family to care for their needs..
Developmental delays are frequently found in many of the orphanage children, even before they are placed in the institution. This is usually a direct result of poor pre-natal and post-natal factors, nutritional inadequacies and medical neglect. Once placed in an institutional care setting, these minor delays are often misconstrued as a metal deficiency or mental retardation. During the critical years of neurobiological development of the child's brain, orphanages are notorious for being deficient in providing the social, emotional and cognitive stimulation required for normal development of the child. Many children are starved, neglected, and forced to stay in their cribs in order to follow safety protocols. Children are frequently and repetitively moved from one age group to another.
As the child ages out, he can no longer learn anything new for the younger children in the group and often regresses to a more immature behavior. All of these factors, combined with profound medical, nutritional, and physical neglect cause these children to revert back to a more primitive state in the child’s mental development. Speech, language, and intellectual abilities languish, and over time developmental milestones deteriorate to levels where the child may appear to be truly mentally delayed or retarded. As a defense mechanism, in order to maintain the child’s own inner well being, neglected children generally shut out all environmental and interpersonal contact that could cause them harm. There is sometimes a component of learned helplessness. It is this type of behavior that often gets labeled as Institutional Autism. Once this pattern of regression occurs, it tends to be insidious and progressive. The following is a list of characteristics that children with Instititutional Autism exhibit:
Loss of physical height and weight. These children look much younger than their chronological age. Severe language delay which can regress to infant babbling Lack of eye contact, aloofness Failure to orient to child’s name Lack of interactive play Lack of interest in peers Failure to use gestures to point or show Sometimes there are severe issues with bedwetting and soiling Behavioral control issues and lack of social development Attention and concentration problems. Example: ADHD-like behavior Deficient in learning and memory Institution-acquired autistic behaviors Some of the most worrisome and disturbing characteristics of children afflicted with Institutional Autism are that when they have complete regression, they resort to self-stimulating behaviors in order to fill the lapses regarding loneliness, deprivation and despair.
Examples of these behaviors are:
Rocking and head banging Uncontrollable outbursts of rage and aggression Body thrusting into inanimate objects such as walls Self-mutilating behaviors such as hair pulling and picking at the body During the adoption process many parents are faced with the dilemma of acquiring a child who exhibits some or all of the above mentioned characteristics. Parents become saddened when the child does not come running or show any type of emotion towards them when they arrive to meet the child. During the first hours to days for these children to be withdrawn, exhibit lack eye contact and lack of communication with the families. Observation over time is the best means to differentiate adjustment problems versus more severe conditions.
After the adoption process is complete and the child returns to the United States, some of these children continue to display some quasi-autistic behaviors learned from in the institution for a period of time after the adoption is completed. It must be remembered that all orphan children have significant impairment in both communication and their social skills. These children cannot be expected to come home, put on a pair of blue jeans and function immediately in our society. There is a great deal of work that is required to rehabilitate these children. In contrast to true Autism, Institutional Autism tends to improve with time and proper interventional services. It has also been found that some children who arrive with severe mental impairment upon arrival have a dramatic improvement in their IQ points in the first years post-adoption.
I must once again stress the importance of rehabilitation, education and a great deal of work on behalf of the parents in order to obtain these results.
*Institutional Autism is not a term found in your everyday Pediatric Textbook. It is a term described by Ronald Federici, Psy.D who has done extensive research and was the first to write about this subject in his book "Help for the Hopeless Child: A Guide for Families (With Special Discussion for Assessing and Treating the Post-Institutionalized Child), Second Edition, by Dr. Ronald S. Federici*
*More information and research on the topic of Institutional autism can be found at www.Drfederici.com
** Disclaimer The information and advice provided is intended to be general information, NOT as advice on how to deal with a particular child's situation and or problem. If your child has a specific problem you need to ask your pediatrician about it - only after a careful history and physical exam can a medical diagnosis and/or treatment plan be made. This Web site does not constitute a physician-patient relationship. For more info: visit www.adoptiondoctors.com or call them at 631-499-4114.
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