I have heard the term “institutional autism” as being a complication of living in an institution or an orphanage. Autism sounds like a very scary word, and I am nervous about this condition. Could you explain this diagnosis and what the expected outcomes are for these children?
Many children who are available for international adoption have either been placed in a 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. A majority of children adopted internationally have been raised in an institutional care facility.
Hospital-based institutions are state-run facilities with little or no resources. Children who have any type of medical condition (even minor problems) are placed in institutions. The institutions they are placed in also house patients with 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 the closed, cold walls of these institutions.
The biggest problem that I personally have with the institutional setting is the medical diagnoses that are given to these children. These diagnoses are often false, exaggerated, and unfortunately sometimes very real. The disparities of the severity of the medical problems found in these children are sometimes incomprehensible. They mix the severely mentally retarded, autistic, and handicapped patients with relatively normal children who have a mild developmental delay or require a minor surgery 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 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 prenatal and postnatal factors, nutritional inadequacies, and medical neglect. Once placed in an institutional care setting, these minor delays are often misconstrued as a mental deficiency or mental retardation.
During the critical years of neurobiological development in 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, he can no longer learn anything new from the younger children in the group and often regresses to 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 of mental development. Speech, language, and intellectual abilities languish; 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.
- Deficiencies in learning and memory.
- Institution-acquired autistic behaviors, such as rocking and head-banging.
Some of the most worrisome and disturbing characteristics of children afflicted with Institutional Autism are the self-stimulating behaviors they resort to in order to fill the gaps of 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 him or her. During the first hours to days, these children tend to be withdrawn, lack eye contact, and lack 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 for a period of time after the adoption is completed.
It must be remembered that all orphan children have significant impairment in both their communication and 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. The good news is, 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 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.
The information and advice provided is intended to be general information, NOT advice on how to deal with a particular child’s situation 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 treatment plan be made. This website does not constitute a physician-patient relationship.