The second glance at institutional autism in internationally adopted children

By: B. Gindis, Ph.D.

It’s difficult to say now who coined the term “institutional autism.” Its history, however, can be traced to the works of the British psychiatrist Dr. R. Spitz, particularly to his article “Hospitalism: An inquiry into the genesis of psychiatric condition in early childhood” (Spitz, 1945). Spitz described several patterns of behavior he observed in young children who were placed in children’s hospitals after their parents perished during the Nazi bombardment of London in 1940-42. In reaction to emotional trauma, loss of primary caregiver, isolation in hospital cribs, and lack of stimulation, these children developed symptoms often found in autistic children. The notion of “hospitalism” was not much in use for the next 40 years, until massive adoption from Romanian orphanages began in early 1990. Almost simultaneously a British psychologist, M. Rutter, and an American psychologist, R. Federici, began using two similar terms, "quasi-autistic features" and “institutional autism,” interchangeably to describe young children adopted from Romanian orphanages.

Following the footsteps of Spitz, Rutter and Federici meant by these terms that it was a rather unique case of acquired autistic-like behavior in children, seen as the result of the ultimate deprivation and isolation associated with living in an institution. These children “learned” to be autistic because of their experiences in orphanages: such self-stimulating behavior as rocking, picking at themselves and head banging, withdrawal, enuresis and encopresis, limited verbal expression, rituals, and emotional outbursts in response to changes in routine were the ways with which the institutionalized children learned to fill the gaps in their lonely and desperate lives. Over the time they practiced these behaviors as a defense mechanism to block out pain and misery and had ultimately become self-absorbed and withdrawn in a way similar to children with autistic conditions.

The current prevalence of this syndrome in internationally adopted children is unknown. The only research data at this point is provided by M. Rutter (2001), who examined 165 children adopted from Romania before the age of 4. The children were examined at 4 years and 6 years, and compared with 52 children of the same age and gender adopted in infancy in the United Kingdom. The researchers found 12% of Romanian adoptees had “quasi-autistic features” versus none in the UK sample. In another study (Rutter, 1999), where the sample consisted of 144 children adopted from Romania by UK families, Rutter and his colleagues found that in children adopted before their 2nd birthday “quasi-autistic features” include rocking, self-injury, unusual and exaggerated sensory responses, and problems chewing and swallowing. (The study used some objective measurements, but mostly was based on adoptive parents’ interviews.) The study found that, with the exception of unusual sensory responses, the rate of difficult behaviors in most cases steadily declined after child’s entering into the adoptive family. In a number of cases the difficulties remained despite quality care in the new home. The findings of Rutter and colleagues (1999, 2001) showed that:


• Sensory and social deprivation can result in the autistic-like behaviors.
• These behaviors may diminish after the child is removed from the initial deprived environment.
• A substantial minority of children will continue to exhibit these difficult behavior patterns for many years.


R. Federici, based on his clinical experience with Romanian adoptees, amended the description of institutional autism syndrome with some characteristics not usually associated with autism: below norm height and weight and slow physical growth. He also pointed out the prevalence of uncontrollable rage and aggressive outbursts in these children. Federici (following Spitz) used the notion of “regression” to explain why these children did not display age appropriate behavior: “…children tend to resort back to the most infantile stage of development where they feel safe and secure” (Federici, 2001). Most of Romanian orphans, however, never lived outside of an institution, and their maturation did not regress from a higher developmental level, as with the Spitz’ children, taken from their former intact families. In fact, in the case of internationally adopted children we witness arrested development rather than regression, because regression would imply that these children had initially reached the required developmental milestones and backtracked. In reality we see a developmental delay, and sometimes it may be severe. Thus, correcting the behavior would not “return” the child to the appropriate developmental level. This distinction may have an impact on remedial strategies for these children, as we will see below.

It should be noted that both Rutter and Federici dealt with children adopted from Romanian orphanages, which represented the most extreme example of inhumane conditions in child-rearing practice. The children who are now coming from other countries (e.g.: Russia, China, South Korea) had never been exposed to as cruel and damaging conditions as in Romanian orphanages.
So, what is the specificity of institutional autism and how does it relate to “real,” organic-based autism?
To approach this question, I have to start with an acknowledgement that international adoptees as a group are more predisposed to developmental disabilities (Autism Spectrum Disorders included) than the population at large (Miller, 2004). General risk factors that predispose internationally adopted children to any developmental disability are:


• Heredity and neurological make-up of the adopted child.
• Lack of postnatal care and negative conditions of development before institutionalization.
• Age when placed in an institution and the length of institutionalization.
• Conditions in institution/country of adoption.


Most professionals now believe that the underlying cause of developmental disabilities is a complex interplay (largely still unknown) between genetic determinants and certain environmental triggers and that these disorders have certain patterns of emotional/behavior disturbances. In short, there is a common "package" of symptoms associated with all developmental disabilities, but it is significantly “amplified” in post-institutional adoptees. As was already pointed out, “learned” autism may have many symptoms in common with other developmental disabilities and may be similar to organic-based autism. Stereotypic or self-stimulating behaviors like rocking, head banging, shaking of hands, face shielding, etc. may become habitual in children with institutional autism. These symptoms may have a rather stubborn nature and reappear at times of stress and aggravation. But it should be clearly stated that institutional autism is not a medical condition, but rather a description of certain patterns of behavior that look like or are similar to what is observed in children with “real” autism. Some autistic-like behaviors may be, in fact, an adaptive behavior in an institutional setting, but become mal-adaptive in a family situation. And if institutional autism is a learned behavior, than adoptive parents have a hope that their child can learn new behaviors. And, indeed, there are instances when adopted children get rid of behaviors usually associated with the autistic spectrum.
Unfortunately, with the majority of cases things are not so simple. The biggest problem is that children who demonstrate autistic behavior may, in fact, have a tendency towards, be prone to, and have a predisposition to “real” organic-based autism: that is why they so easily develop or imitate autistic-like behaviors. In other words, institutional autism is mostly found in children who do have at least a predisposition to the neurological aberrations that lead to autism; the institutional setting just facilitates and encourages such behavior.
Another significant difficulty is that autistic-like behavior may go hand by hand with attachment issues, child depression, immature social skills, limited verbal communication, etc.
In the BGCenter database we have the results of nine cases sent in 2000-2004 to our clinic specifically for the differential diagnosis related to institutional autism. All nine cases had from 1 to 2 years of follow up information. Here are the results of this clinical sample:


• There were 6 boys and 3 girls in the sample. Ages ranged from 3 years 4 months to 9 years 2 months.
• 6 children were from Romania, 1 from Hungary, 1 from Poland, 1 from Russia.
• In 8 out of 9 cases organic-based autism was confirmed. Two cases out of eight had Asperger’s Syndrome.
• Only one case was confirmed as institutional autism with the background of child’s depression, attachment issues, and severe fine-motor delays.


As one can see in this limited clinical sample, if a post-institutionalized child displays autistic behaviors, in most cases these are symptoms of organic-based autism.

The major distinguisher between organic-based and institutional autism is a positive dynamic in the child's development of appropriate behaviors in the family. Most behaviors originating in organic-based autism will stay, showing small and slow changes, while the same identifiable behaviors associated with institutional autism should diminish progressively until complete disappearance (although they may re-surface in response to stress and environmental challenges).

Another distinguisher is the severity of the problems and the constellation of symptoms. In organic-based autism the symptoms are usually more clearly defined and presented in well-known clusters described in the professional literature; in institutional autism only separate patterns of autistic behavior are present, they are not consistent, and they are not clearly expressed or easily explained by environmental circumstances. It depends on a child’s age but if, after a year in the family, autistic-like behavior patterns do not diminish, it is likely that we are dealing with organic-based autism or another variation of developmental disability.
For a mental health professional with no previous experience with post-institutionalized children, these patterns of behavior appear as typical for any autistic child, thus making a differential diagnosis between real autism and learned autistic-like behaviors one of the most complicated tasks.
After a diagnosis of institutional autism is made and we understand that this is a learned behavior, the question is what are the most appropriate remedial actions to address it?
One time-tested recommendation is that children with institutional autism should not be placed in the same programs with organic-based autistic children in order to prevent them from mimicking and reinforcing inappropriate behaviors. Instead, behavioral patterns associated with institutional autism should be recognized as learned mal-adaptive behaviors and addressed with behavior modification programs that are commonly used for non-autistic children. This does not mean that the Applied Behavior Analysis (ABA) currently used to modify the behavior of children with organic-based autism should be excluded. However, appropriate modifications for complementing ABA with cognitive-based therapies to compensate for the below age expectation developmental level of a child is the most effective way to address institutional autism in internationally adopted post-institutionalized children.

Additional info and references:


Additional info and references:
1. Federici, R. (2001) Raising the post institutionalized child: Risks, Challenges, and Innovative Treatment.
2. Miller, L. (2004). The Handbook of International Adoption Medicine: A Guide for Physicians, Parents, and Providers. Oxford University Press, Cary, NC.
3. Rutter, M, et al. (2001) Specificity and heterogeneity in children's responses to profound institutional deprivation. British Journal of Psychiatry, vol. 179, pages 97- 103.
4. Rutter M, et. Al. (1999) Quasi-autistic patterns following severe early global privation. Journal of Child Psychology and Psychiatry. 40(4), pp: 537-49.
5. Spitz, R. (1945). Hospitalism: An Inquiry Into the Genesis of Psychiatric Condition in Early Childhood. The Psychoanalytic Study of the Child, Vol.1 (page 53-74). New York, International Universities.