Autism In Children Adopted Internationally:Myth Or Reality?
Of Special Education - Volume 23,
Number 3, 2008, pp, 118-123.
Boris Gindis, Ph.D.,
NYS Licensed Psychologist
autism is understood as a learned behavior produced by an institutional
environment such as an orphanage. Some autistic-like behaviors may
be adaptive in an institution, but become mal-adaptive after the
child's adoption into a family. A differential diagnosis between
autism as a medical condition and learned autistic-like post-institutional
behaviors is to be made. A conclusion is drawn that institutional
autism is merely a description of certain patterns of post-institutionalized
behavior that may appear similar to what is observed in children
with autism. Abrupt native language attrition, typical for the majority
of international adoptees, could contribute to autistic-like behavior.
The term institutional autism has emerged with the
influx of children born overseas, raised in orphanages, and adopted
by American families within the last 20 years. Several terms have
been used interchangeably: institutionally induced autism (Federici,
1998), quasi-autism (Rutter, 1999, 2001, 2007), acquired institutional
autism (Miller, 2004), post-institutional autistic syndrome (Hoksbergen,
2005), etc. The common meaning behind all these modifiers of the
term autism is that children may acquire autistic symptoms due to
their early life in orphanages, hospitals, and other similar institutions.
For the sake of clarity, only one term is used in
this article, namely institutional autism. It must be stressed that
institutional autism has nothing in common with the phenomenon of
acquired or regressive autism, a concept that is currently debated
in the medical community (see Vaccines and Autism, 2004, Immunization
Safety Review Committee, Washington DC). Acquired or regressive
autism is a condition in which children develop normally for the
first 12 to 18 months of life and then regress into an increasingly
wide spectrum of autistic disorders due to damage done to their
immune system, whether by virus, genetic disposition, intrauterine,
prenatal, or neonatal stress, or other traumata (Baskin, 2004, Presentation
to the Immunization Safety Review Committee, Washington, DC).
Historically, the notion of institutional autism can
be traced to an article by British/American psychiatrist Rene Spitz
(1945). Spitz described several patterns of behavior he observed
in young children who had been placed in the London Children's Hospital
after their parents perished during the Nazi bombardment of London
in 1940-1942. In reaction to emotional traumata, loss of primary
caregiver, isolation in hospital cribs, and lack of stimulation,
these children developed symptoms that were at least similar to
those often found in children with autism. The notion of hospitalism
was not used much over the next 40 years, until the massive adoption
from Romanian orphanages by American, Canadian, and British families
began in the late 1980s and early 1990s. Almost simultaneously researchers
in Canada, the US, and Western Europe began using the notion of
institutional autism in describing young children adopted from Romanian
Following in the footsteps of Spitz, the researchers
depicted autistic-like behavior in children, seen as a result of
the ultimate deprivation and isolation associated with living in
an institution. In essence, these authors conveyed that orphans
learned autistic patterns of behavior due to their experiences in
orphanages: such self-stimulating behavior as rocking, picking at
themselves, head banging, withdrawal, limited verbal expression,
rituals, and emotional outbursts in response to changes in routine
were the ways in which institutionalized children learned to fill
the gaps in their lonely and desperate lives. Thus, according to
Federici, Over 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 (Federici, 1998, p.74).
The prevalence of autism and other developmental disabilities
in internationally adopted children is unknown at the moment, although
there is a widespread belief that orphanage residents are more prone
to developmental disabilities than their peers at large (Miller,
2004; Welsh, Andres, Viana, Petrill, Mathias, 2007). It is understood
that in addition to general risk factors that predispose institutionalized
children to any developmental disability (heredity and the neurological
make-up of the child) there are secondary factors, social in nature
(such as the lack of post-natal care and negative conditions of
development in institutions), that facilitate the formation of developmental
delays and disabilities in this population. The proportion of organic
(genuine, biologically-based) autism and institutionally-induced
autistic-like behavior in institutional residents is also unknown.
The only statistical research data at this point are provided by
Rutter and his colleagues in their publications dated 1999, 2001,
2007 and Hoksbergen, Laak, Rijk, Dijkum, & Stoutjesdijk (2005),
based on relatively small samples.
Rutter (2001) and his colleagues 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) that included rocking, self-injury, unusual
and exaggerated sensory responses, and problems chewing and swallowing.
(The study was mostly based on adoptive parents' interviews. The
Autism Screening Questionnaire was completed by all participants
and the Autism Diagnostic Interview - Revised was administered to
those parents who reported autistic symptoms.) The investigators
found that, with the exception of unusual sensory responses, the
rate of autistic-like behaviors in most cases steadily declined
after the child entered the adoptive family. In a number of cases,
however, the difficulties remained, despite good-quality care in
the new home.
In the most recent study (Rutter, 2007), in which
the sample consisted of 144 children adopted from Romania by UK
families, Rutter and his colleagues assessed twenty-eight children
for whom the possibility of autistic behavior had been raised, using
the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic
Observation Schedule (ADOS). All the examinees joined their adoptive
families before the age of 4 and were examined every two years,
the last time at the age of 12. It was found that sixteen children
had clearly shown autistic symptoms, a rate of 9.2% in the Romanian
institution-reared adoptees as compared with 0% in the domestic
adoptees. There were, in addition, 12 children with some autistic-like
features, but for whom the quasi-autism designation was not confirmed.
The longitudinal study of this sample (started at the age of 4)
indicated that a quarter of the children who had previously shown
autistic-like features were free of these symptoms at the age of
12. The article concluded that initially the quasi-autistic patterns
were found in over 10 percent of the sample but the significance
of these features was diminished with years of living in adoptive
families. The authors stressed that
although there were important
similarities with 'ordinary' autism, the dissimilarities suggest
a different meaning (p. 1200). Unfortunately, no further analysis
was provided and the reader remains with the impression that while
some children in the studied group show definite signs of autism,
others have something else of an unknown nature that may resemble
Hoksbergen (2005) and his group basically repeated
the research design of Rutter's 1999 and 2001 studies and applied
it to 80 Romanian children adopted by families in The Netherlands.
(Adoptive parents were interviewed using Autism Diagnostic Interview
- Revised.) In about 1/3 of the group the parents reported (in retrospect,
because the children had already lived in the families for four
to five years at the time of the interview - BG) stereotypic behaviors
and communication and language disorders. Six out of 80 were diagnosed
with full-fledged autism, while seven showed some autistic behaviors
(in a relatively mild degree) even five years after adoption. As
in Rutter's study, there was no statistical difference between the
genders (in organic-based autism males have a higher incidence -
BG). Like Rutter, Hoksbergen found that those who had been in their
adoptive families for five years or longer showed fewer autistic-like
behavior problems than children who had been in their adoptive families
less than five years.
One may conclude from the Rutter, et al. and Hoksbergen, et al.
studies described above that:
1. On arrival, a significant number (from
10% to 30% in their samples) of former orphanage residents present
patterns of behavior similar to those observed in children diagnosed
with different degrees of autism. These patterns include:
(a) Self-stimulating behaviors (rocking,
head banging, shaking of hands, face shielding, etc.).
(b) Self-mutilating behaviors such as hair pulling and
picking at the body.
(c) Abnormal responses to sensory stimulation (e.g.:
seeking unusual tactile sensations, attraction to bright visual
(d) Temper tantrums in response to change in routine
and seemingly unmotivated uncontrollable outbursts of rage and
(e) Some behaviors that are normally not associated with
autism (e.g.: problems chewing and swallowing).
2. In contrast to organic-based autism, in
which boys are more affected, the listed behaviors were equally
present in both genders.
3. These patterns are mostly evident on arrival and in
the majority of symptoms diminish in intensity and usually disappear
along with the children's time in their families.
4. A substantial minority of children continue to exhibit
these difficult behavior patterns for many years. Thus, in Hoksbergen's
study 7.5% of the children in his sample were diagnosed with autism.
(The usual prevalence in the population at large is less than
1%, according to DSM-lV-TR.)
Based on a review of the short list of existing publications
on institutional autism, a question can be raised: Does this notion
indeed reflect clinical reality? In the samples studied by Rutter
and Hoksbergen there were two categories of children: those who
had genuine autism and those who demonstrated a rather heterogeneous
cluster of behaviors, with some patterns similar to those observed
in truly autistic children. Both the nature and the psychological
mechanism of these autistic-like behaviors remain unexplained. In
addition, none of the reviewed publications discussed a crucial
element in producing autistic-like behavior, namely, abrupt native
language attrition (Gindis, 1999, 2005). Indeed, what is common
to practically all international adoptees is the process of speedy
native language loss and the relatively slow process of new language
learning, which may heavily contribute to autistic-like behavior
during the initial adjustment period when institutional autism is
A clinical study focusing on differential diagnosis
of autism in international adoptees was completed at the Center
of Cognitive-Developmental Assessment and Remediation, located in
Nanuet, NY (www.bgcenter.com).
This is a private clinic specializing in the assessment and remediation
of internationally adopted post-institutionalized children. In our
clinical database we have the results of 389 cases of screening-on-arrival.
These evaluations were performed within the first 2 to 10 weeks
of the children's arrivals in the USA. All assessments were done
in the children's native language (the children were adopted mostly
from the countries of Eastern Europe, republics of the former Soviet
Union, and China). The age range of cases in our sample was from
3 years 6 months to 9 years 6 months. The purpose of the screening-on-arrival
was to check for possible mental health issues, to facilitate appropriate
school placement, and to determine the need for mental health or
school-based remedial services. Screening consisted of cognitive,
language, adaptive behavior, and academic readiness components.
A thorough parent interview included inventory of autistic behavior
in their children - Children Autism Rating Scale (CARS). The screening
was done during the acute phase of initial adjustment of a child
to the family and new social/cultural environment. Indeed, many
parents reported behaviors (see below) that were similar to those
listed in Rutter's publications. These patterns of behavior, varying
in intensity, were often transitory, but in some cases the children
persisted in displaying typical orphanage survival skills that resembled
autistic symptoms. In fact, these were patterns of institutional
Institutional behavior -
what is it?
Learned orphanage behavior is a set of survival skills
that are functional and adaptive in the specific milieu of an orphanage.
Through direct observation and clinical interviews with almost four
hundred adoptive families during screening-on-arrival procedures
in our clinic, the following major clusters of institutional behavior
were detected in international adoptees in the age group of 3 years
6 months to 9 years 6 months:
1. Self-soothing behavior: withdrawal (aloofness)
with finger sucking or clothes sucking, hair twisting, full-body
spinning and rocking, head spinning and banging, covering ears
to block out even ordinary sounds.
2. Self-stimulating behavior: excessive reaction
to even ordinary stimuli, extreme restlessness, obsessive touching
of self and objects, unusual reaction to some sensory stimuli
(taste, smell, touch), making weird and animal-like sounds.
3. Self-defending behavior: active resistance
to any changes in routine and environment, hyper-vigilance to
physical gestures and tone of voice, proactive aggressiveness,
extreme fear or its opposite - extreme fearlessness, lying, stealing,
hoarding (food or objects).
4. Attention seeking and over-friendliness
with strangers: for many months after arrival, former orphanage
residents continue to pursue adults' attention, negative or positive
(any adult, not only their parents). A variation of this extreme
attention seeking is learned helplessness: children in orphanages
had been conditioned to get more attention from caregivers when
they seemed helpless.
5. Controlling or avoiding behavior resulting
in abrupt refusal/noncompliance with family and school rules and
6. Immature self-regulation of behavior and
emotions resulting in impulsivity, difficulty following rule-governed
behavior, emotional volatility, difficulty with delaying gratification.
The above behaviors are typically presented in a wide
range of intensity. Also, quite opposite characteristics could be
found in the same child. There is no gender difference in these
behaviors, except withdrawal being more typical for girls and aggressiveness
being more typical for boys. Some of these behaviors are similar
to those observed in a range of psychiatric conditions, such as
ADHD, PTSD, and RAD. It is important to note that the first three
(most autistic-like) patterns of institutional behavior are more
typical for a younger cohort (3 to 5 years old) and are much less
often found in children older than 5.
As reported by our respondents, typically the dynamic
of observed autistic-like behaviors goes from a rather intense degree
on arrival to a relatively rapid loss of intensity and at least
partial disappearance within several weeks and months after entering
One common denominator for all these behaviors among
international adoptees is rapid native language attrition. It significantly
limits verbal communication during the first several weeks of the
child's life in the family, when institutional behavior is at its
peak. A lack of or severe limitation in verbal communication typically
leads to significant regression in the child's behavior and the
emergence of the immature self-stimulating conduct described previously
(for more discussion please refer to Gindis, 2004). To the best
of this writer's knowledge, no research has been done on the links
between the transient autistic symptoms and the language transition
experienced by international adoptees within the first several months
in an adoptive family. So far this is a hypothesis that has been
evoked by often empirical observations. It is supported, although
indirectly, by the finding that children who are adopted within
their native countries (that is, do not experience language disruption)
have fewer autistic symptoms than international adoptees (Groark,
C, Muhamedrahimov, R., Palmov, O., Nikiforova, N., McCall, R. (2005).
To make a differential diagnosis between autism, institutional behavior,
and temporary patterns of behavior related to the adjustment period
and abrupt language attrition is one of the most daunting tasks
in the field of mental health and rehabilitation. Experience with
internationally adopted children is an essential qualification for
involved mental health professionals. In addition to testing, the
correct diagnosis requires skillful observation, a thorough parent
interview, and study of the child's adoption documentation. A careful
review of the developmental history after adoption is crucial because
such features of institutional behavior as repetitive self-stimulating
and self-soothing behaviors, as well as a lack of appropriate spontaneous
social interactions, do show dramatic improvement with time, in
contrast to symptoms associated with the autistic spectrum disorders.
Another problem with differential diagnosis is that
temporary autistic-like behaviors, caused by institutionalization
and/or by an abrupt language loss at adoption, may go hand-in-hand
with a wide variety of different psychiatric disorders, such as
RAD, PTSD, childhood depression, etc. In addition, verbal communication
deficiency during the initial adjustment period, followed by abrupt
first language attrition, provokes patterns of behavior that fit
a description of genuine autism very well, including withdrawal,
angry outbursts related to an inability to communicate effectively,
and self-soothing and self-stimulating behaviors. In many ways these
abnormal behaviors are a typical human reaction to a new and unmanageable
situation. It is known that typically developing children may demonstrate
some autistic-like behaviors either as passing patterns of normal
development (Leekam, 2007) or as a temporary trauma-induced pattern
The factors facilitating a differential diagnosis,
are the dynamic and severity of each symptom. A major distinguisher
between organic-based autism and temporary autistic-like institutional
behavior is the presence of positive dynamic in the child's development
in the family. While most behaviors originating in organic-based
autism persist, showing only small and slow, if any, changes, the
same identifiable behaviors associated with institutional behavior
and loss of language should diminish progressively until they completely
disappear, although they may re-surface in response to stress and
environmental challenges. The timetable depends on a child's age
and a host of individual differences, but if after two to six months
in the family autistic-like behavior patterns do not diminish in
intensity, it is likely that we are dealing with organic-based autism
or another variation of developmental disability. In children younger
than 5, during the first several weeks in a family some withdrawal,
lack of interactive communication, poor eye contact, and self-stimulating
behavior is a relatively common occurrence and should be considered
normal and expected for the adjustment period.
Another distinguisher is the severity of a problem
within a 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. Institutional
behavior reflects only separate patterns of autistic behavior that
are not consistent and can often be explained by environmental circumstances.
Based on the information presented, it is likely that
in the samples studied by Rutter and by Hoksbergen both groups (children
with organic-based autism and learned orphanage behavior) were present.
Those children whose behavior improved with the time spent in the
family demonstrated temporary orphanage behavior patterns whereas
those with stubborn autistic symptoms most likely had organic-based
autism. Some children may present an undifferentiated cluster of
symtoms and so qualify for the designation of PDD-NOS.
A differential diagnosis between institutional behavior and autism
has significant practical implications. The term institutional autism
(and its synonyms), which has gained some popularity, has led to
confusion among professionals, false hope among adoptive parents,
and ill-suited remedial efforts from educational and rehabilitative
The notion of institutional autism is confusing for
personnel involved in remedial work with post-institutionalized
children because if a child has autism, a range of proper educational
(remedial methodology) and administrative (placement and services)
actions should take place. If a child demonstrates institutional
behavior, a completely different set of actions should take place.
The notion of institutional autism gives false hope to adoptive
parents, leading them to believe that their children will outgrow
the condition known as autism: it diverts their efforts and de-mobilizes
them in their search for an appropriate remedial program for their
In contrast to autism, institutional behavior is to
be recognized as learned maladaptive behavior and addressed with
behavior modification methodologies commonly used for non-autistic
children. One time-tested recommendation is that children with institutional
behavior should not be placed in the same programs as children with
organic-based autistic in order to prevent their mimicking and reinforcing
inappropriate behaviors. Parental consultation and counseling, modification
of parenting techniques, changing parental expectations and attitudes,
using short-term behavior programs and addressing specific behavior
have proven to be effective in addressing issues of institutional
We must clearly differentiate between autism (an organically-based
and behaviorally-defined developmental disability with a range of
conditions and degrees) and institutional behavior (as learned in
orphanages, adaptive/survival skills that are temporarily reinforced
by an abrupt loss of language and an acute adjustment period to
a new social/cultural environment and new family). The former is
a medical condition depicted in the current DSM-lV-TR (2005, pp.
70 - 75); the latter is the product of specific social conditions.
Although the notion of institutional behavior as related to post-institutionalized
children is much more diverse than a behavior pattern associated
with autism, certain autistic-like manners/actions are a part (albeit
temporarily) of institutional behavior (Gunnar, M., & VanDulmen,
M. (2007). Both may have similar overt behavior patterns, and both
may be present in internationally adopted children, but these conditions
require entirely different remedial approaches.
Now that the biological nature of autism is well documented
(Trottier, Srivastava, Walker, 1999; Freitag, 2007), suggesting
that social factors (e.g.: deep institutional privation Rutter,
1999) without known neurological aberration (or other biological
and genetic causes) can result in autism (even with modifiers such
as institutional) seems a relic of psychogenic theories of the causes
and origins of autism. It is a scientific fact that no known psychological
factors in a child's development have been shown to cause autism,
and autism spectrum disorders are certainly not caused by bad parenting
or rearing in an institution. Institutional autism is merely a confusing
metaphor; instead of using this misleading term, a differential
diagnosis is the first step in crafting a solution.
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