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Institutional Autism

By Ronald S. Federici, Psy.D.

This article is an excerpt from Dr. Federici's book, Help For The Hopeless Child: A Guide For Families
(This book is available in our Garden Book Store.)

Over the past decade there has been a tremendous influx of children coming from post-institutionalized settings in various Easter Bloc, South American and Far Eastern countries. These children have often been placed in hospital-based or classic institutional settings following illnesses or even death of the biological parents or the parents general inability to care for the child's emotional needs. Children from Eastern Bloc countries in particular have been rapidly placed in institutionalized settings due to the demise of the communist systems which have rendered many people poverty stricken and homeless with a subsequent inability to care for an of the medical, physical or psychological needs of their children.

Children having any type of medical problem (even mild) are often placed in hospital settings or institutional care programs which are state run. For example, children who have been described as being somewhat "slow" or even suspected to have mental retardation (i.e. the Russian word Oligophrenia) are often called morons, imbeciles or some other term pertaining to mental deficiency. These types of children are often placed in neuropsychiatric facilities in great volumes.

Additionally, children with even mild medical problems such as orthopedic damage or some other type of crippling pattern in which they are not able to walk (but could be walking with adequate surgical interventions and physical therapy) are also placed in hospital-based institutions.

Children with somewhat more complicated medical problems such as hepatitis, hemophilia, congenital malformations and deformities, mental retardation or classical autism are often placed institutions for the rest of their lives.

The principal problem with this situation of placing children in hospital-based or institutional settings for a defined "problem" is that many of the diagnoses are typically incorrect or over exaggerated. Once the children are placed in institutional settings, particularly those in the Easter Bloc countries of Romania, Moldovia, and various sections of the former Soviet Union, they are destined to remain there for life without appropriate medical or psychiatric/psychological interventions.

In particular, many of the children who are placed in neuropsychiatric facilities have been termed mentally deficient or Oligophrenic. More often, the child's mental delays are the direct result of very poor pre and post-natal factors, nutritional and medical neglect, in addition to a child having a situation such as simple speech and language delays in their own native language which have been misconstrued as mental deficiencies.

Once children are placed in these types of institutional settings, they are often moved repetitively. For example, infants are often placed in some type of hospital or nursing setting for the first 1-2 years of their life and then transferred to another setting which can often last from 2-5 years. It should be emphasized that, during these critical years (birth through 4-5 years old) these institutions typically lack any and all type of stimulation, language and intellectual-cognitive development, early school-based programs or even appropriate medical diagnosis are care. So often, children are starved, neglected, and isolated to their cribs.

It has been well documented that many of these children have been found to be tied to their cribs or isolated and sheltered from human contact. Combined with profound medical, nutritional and often physical neglect and abuse, these children regress to very primitive states to where any and all type of sensory-motor, speech and language, and even intellectual abilities have become stagnated and, over the course of time, typically regress and deteriorate to levels where they appear truly mentally deficient when this was not the starting pattern in their lives.

As the institutional child continues to "transfer" from institutional setting to institutional setting, the level of deprivation often increases. Very often, children are "warehoused" in the institutional settings to where there are up to five children in a bed with literally dozens of children per on caretaker who is often completely oblivious to their physical and psychological needs. It has also been documented that there is often a "medical director" assigned to the facility who rarely shows up. The children often receive medical care when they are in an acute or life threatening situation, and the medical care is often very poor and can sometimes cause even more problems in the actual illness of the child (i.e. the treatment can sometimes be worse than the actual illness).

It has been this writer's experience based on visiting multiple institutions in Easter Bloc settings that the profound levels of neglect intensify with each year the child is alive. Basic physical and nutritional needs are not provided which results in the child's brain and physical development slowing to where it is almost impossible to actually detect the age of the child. There have been many children observed who have the appearance of a 6 to 7 year old when in fact they are actually in their early or mid-teenage years. Additionally, many children have been literally tied down to their cribs for days, weeks and even months at a time, with even their feedings being given while they are in their cribs. Over the course of time, there is a literally no movement and many of the children lose many and all previously acquired language.

Additionally, many of the children who have some level of physical problem, particularly orthopedic problems in which they are not able to mobilize around the institution, become targets of physical and sexual abuse which further causes post traumatic stress disorder features, profound depression and a "regression" to a stage of early infancy in which they are literally "shutting out" any and all type of environmental and interpersonal contact. More simply, children look for any type of safety and security when they are being totally deprived and neglected.

What tends to emerge in the child who has received multiple institutional placements combined with profound neglect and abuse on a wide scale level is the "regression factor" or the child who "disintegrates" and loses motor, sensory, speech and language, and intellectual skills. Once this regression occurs, it tends to be insidious and progressive.

Emergence of Institutional Autism Syndrome
Previous sections of this book have outlined varying types of childhood pervasive developmental disorders and childhood autism. Reference was briefly made to the "Childhood Disintegrative Disorder" which seems to imply that there is a "loss of acquired skills".

The child from the post-institutionalized setting does not fall into any of the classic definitions of classical autism, Rhetts disorder or even childhood disintegrative disorder, although there is certainly a "disintegration" once a child has remained in an institutional setting. While there is no actual "equation" as to how long it takes for a child to become damaged while living in an institution, it appears that for every year of life in an institutional setting, there can often be a rapid rate of regression in psychological and cognitive functioning up to 6 months. For example, a child who has been institutionalized for one year most likely is "delayed" six months. A child in a setting for two years is most likely delayed a year and so on and so on. A unique institutionally specific "pattern of behaviors" which constitutes the Institutional Autism Syndrome are the following characteristics:

1. Actual loss of physical height, weight and growth. Many of the children have been described as "not even being on the growth curve".

2. Inability to physically decided on the actual age of a child. Therefore, many children upon adoption are assigned on age when, in fact their actual age may be much older.

3. Children often are not speaking any language or have language which is so regressive that it is significantly below age and grade level, and almost constitutes the "infant babbling syndrome". Children may have been speaking in their native language, but have regressed to where there is only a partial ability to receive and express language.

4. Children's behaviors have rapidly deteriorated to where primitive acting out occurs. While all children in any type of institutional setting typically have behavioral control problems and a lack of social development, the majority of the children tend to be extremely regressed, emotionally and behaviorally out of control to where they present with profound attachment disorder characteristics when, in fact the attachment disorder is one of a "neuropsychologically-based" attachment disorder as cognitive problems are clearly evident.

5. Children in institutions have experienced profound nutritional and medical neglect over the course of (often) years. These factors of profound medical neglect adversely affect the body and brain development to where many of the children clearly develop a brain syndrome which involves language deficits, attentional and concentrational problems, confusional behaviors and clearly deficient memory and learning.

6. If and when major neurocognitive deficits and delays have been evident, children in institutional settings often have very primitive and regressive behaviors. A regression back to enuresis and encopresis (urination on themselves and self-defecation) are very common. Additionally, children can often resort to playing with urine and feces.

7. The ultimate "institutional autistic behaviors" is a complete regression to self-stimulating behaviors as a way of "filling in the gaps" regarding loneliness, deprivation and despair. Combined with profound medical and nutritional neglect, children in institutional settings may have been able to "recall" some pleasurable activities (particularly if they were placed in the institutional setting at an older age). When these minute "recollections" of something positive in their life are gradually and consistently taken away, children tend to resort back to the most infantile stage of development to where they feel safe and secure. This typically means that children will remain very isolated, lost and alone, and resort back to rocking and other self-stimulating behaviors. It is very common for children who have been sensory deprived and socially neglected for years in an institution can find some degree of pleasure in self-stimulating rocking and movement behaviors; hyperactivity and uncontrollable rage and aggressive outbursts; in addition to self-mutilative behaviors such as hair pulling, picking at various parts of their body and, under more severe circumstances, head banging and body thrusting into inanimate objects such as walls and windows. This syndrome implies that the child is both trying to fid a way to maintain internal physical and psychological "movements" which serve as some level of stimulation while at the same time, finding ways to "pass the time" of profound loneliness and despair.

Over the course of time and with continual "practice" of these cognitive and physical behaviors, a child develops a "repetitive pattern" of newly learned movements, mannerisms and speech. Henceforth, the concept of institutionally induced autism has come about based on this author's many years of experience in visiting institutions and evaluation hundreds of children who have spent many years of their life in a deprived and emotionally damaged setting. Institutional autism will hopefully emerge as a more specialized "subgroup" of pervasive developmental disorder of childhood and reactive attachment disorder as this "syndrome" is specific to the child having been reared (or survived) the profound medical, psychological and environmental neglect often seen in institutional settings and hospitals in the Third World countries. A better understanding of this unique and highly complex syndrome may help families approach the entire concept of international adoptions in a different manner. Examples of improving the entire adoption of the internationally post-institutionalized child may include the following:

1. Adoption agencies having a better awareness of the institutional autistic syndrome and concepts pertaining to post traumatic stress disorder. Setting up a "task force" of trained professionals to work in the institution where children are being adopted out would be beneficial as this may help better "prepare" and "desensitize" the child for a period of time prior to their adoptive families taking charge. Experts should be trained in severe abuse and neglect syndromes, and work with the perspective adoptive child for a minimum of 3-6 months before they are allowed to be placed with their new family.

2. Families having adopted a child from an institutional setting should be required to attend intensive pre and post-adoptive training programs to deal with the post-institutionalized child. The Parent Network for the Post-Institutionalized Child has done an outstanding job of setting up various training programs around the country, in addition to having regular newsletters, mailings and research readily available to families in need.

3. Families need to address specific treatment issues which are highly specialized and germane only to the post-institutionalized child with the possibility of an institutionalized autistic disorder. A unique and innovative family therapy approach should be arranged immediately upon the child's arrival to their new family in the United States. References regarding innovative treatment are made in the treatment section of this book.

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