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Opinion / Viewpoint

Romanian orphans reveal clues to origins of autism

by  /  25 April 2017
Troublesome tics: Children who are deprived of sensory stimulation often resort to self-stimulation in the form of repetitive behaviors.

Photographs courtesy of Michael Carrol
The Expert:
Expert

Charles Nelson

Research director, Boston Children’s Hospital

There are many risk factors for autism, some genetic and others environmental. But few are more intriguing — and disturbing — than psychosocial deprivation in infancy.

Psychosocial deprivation is essentially a lack of caregiver stimulation and investment. It is particularly common among children reared in institutions. Researchers, myself included, have been studying the effects of psychosocial deprivation in Romanian children who were institutionalized as infants. These orphans lived in large white rooms crowded with cribs. They were fed and changed but otherwise ignored.

After the Ceausescu regime ended in December 1989, journalists from the United States and Europe flooded into the country and began to report on the plight of the more than 170,000 children living in state-run institutions.

Many of these orphans were adopted as young children and went on to better homes. But up to 10 percent of these adoptees still have persistent social difficulties and repetitive behaviors — a set of features sometimes referred to as ‘quasi-autism1.’

Autism features in these children are most likely rooted in their early lack of social experience. Experience serves as the set of instructions that guide the formation of circuits in the developing brain. When deprived of experience, the brain is left to wire itself, and the process can go awry.

The path to autism in Romanian orphans is likely to be different from that of other children with the condition. Whether the orphans who are diagnosed with autism even have the same condition as others with the diagnosis is debatable.

Yet understanding what gives rise to autism features in children who were socially deprived as infants could offer clues to these features more broadly, and hint at interventions to ease them.

Infants at an orphanage in Bucharest, Romania, were changed and fed but otherwise ignored.Michael Carrol

Newborn neglect: Infants at an orphanage in Bucharest, Romania, were changed and fed but otherwise ignored.

Seeking stimulation:

Two studies have addressed the link between early psychosocial deprivation and autism. The English Romanian Adoptees study, which began in the early 1990s, is tracking the development of 165 Romanian orphans who were adopted into homes in the United Kingdom before age 2. About 10 percent of the children adopted after 6 months of age were diagnosed with autism sometime in childhood2.

I am co-leader of a second study, the Bucharest Early Intervention Project, in which a team of researchers has followed 136 Romanian orphans from as early as infancy into adolescence. At the start of the study, the children ranged from 6 to 30 months of age, when we assigned half of them to a high-quality foster care program; the other half remained in institutional care. About 5 percent of the children meet the criteria for autism regardless of whether they entered foster care3.

Children in both studies were deprived of a range of experiences and stimuli as infants. They had little to look at or listen to other than the babies in cribs beside them. No one talked to them, played with them or responded to their cries.

Infants who lack external stimulation often resort to self-stimulation. A common form of self-stimulation is repetitive behavior, such as hand flapping or rocking. We found that more than 60 percent of children in our study show these behaviors, even though most fall short of an autism diagnosis.

 Roughly 1 in 10 children raised in Romanian orphanages has autism features. Michael Carrol

Curious consequence: Roughly 1 in 10 children raised in Romanian orphanages has autism features.

Interestingly, placement into high-quality foster care after infancy but before the age of 2 is associated with a dramatic decrease in the prevalence of repetitive behaviors by age 54. The foster care provided the children with the social interaction and sensory stimulation that they had lacked earlier.

This improvement suggests that neural circuits that underlie repetitive behaviors can be rewired within a certain window of development. So early intervention may be particularly useful at ameliorating this feature of autism.

Social circuits:

Social difficulties, by contrast, often persist into adolescence, long after the children have entered foster care or adoptive families. For example, many of the orphans show indiscriminate social behavior, such as hugging or jumping into the arms of strangers. They also have difficulty relating to their peers5.

Children who left the orphanages before age 2 tend to show subtler social difficulties than those who left later or who remained institutionalized. But the fact that some difficulties remain suggests that there is a critical period for aspects of social and emotional development. If children fail to receive the stimulation required to facilitate healthy development, they may not recover.

Many of the children in our study are now teenagers, and have lasting social difficulties regardless of whether they entered foster care before 2 years of age. They are awkward when initiating interactions with peers or responding to invitations to play, and their teachers rate them as less socially skillful than their peers.

The persistence of these problems is additional support for the idea that the neural circuits underlying social behaviors are forged during the first two years of life, and are relatively inflexible after that age.

Most researchers who have met the Romanian orphans agree their condition appears to be different from classic autism. So it is unclear whether the mechanisms underlying the features of these orphans are the same as those that underlie autism.

Still, there are lessons scientists can learn from these children — notably, that psychosocial deprivation can, in some children, lead them down a path that looks similar to what we think of as autism. In particular, we don’t know why 90 percent or more of the orphans do not develop autism. Perhaps there are genetic risk factors — or resilience factors — at play.

Identifying the environmental contributions — particularly, those involving caregiving — to the features of these children may reveal treatment opportunities for all forms of autism.

Charles Nelson is professor of pediatrics and neuroscience at Harvard Medical School and director of research at Boston Children’s Hospital’s Developmental Medicine Center.


References:
  1. Rutter M. et al J. Child Psychol. Psychiatry 48, 1200-1207 (2007) PubMed
  2. Sonuga-Barke E.J.S. et al Lancet 389, 1539-1548 (2017) PubMed
  3. Levin A.R. et al J. Am. Child Adolesc. Psychiatry 54, 108-115 (2015) PubMed
  4. Bos K.J. et al Arch. Pediatr. Adolesc. Med. 164, 406-411 (2010) PubMed
  5. Zeanah C.H. et al. Child Dev. 76, 1015-1028 (2005) PubMed
  • Wolfgang Engler

    Congratulations: Your research is a real breath of fresh air. Very old research circa ~1970 showed *low functioning* Autism did not correlate with child neglect. Rimland and others championed this finding and made supporting families with Autistic kids into the powerful political lobby we see today. Asking how *high functioning* Autism correlates with child neglect has been bad politics ever since. Recent studies however show maternal mental illness correlates with 2.5 times the background incidence of Autism. Quoting from your Article:
    “The path to autism in Romanian orphans is likely to be different from that of other children with the condition. Whether the orphans who are diagnosed with autism even have the same condition as others with the diagnosis is debatable.”
    Apparentlly you feel the need to bend to Rimland’s Autism politics. Advocating for families with Autistic kids is fine. But science needs to be objective, and kids facing neglect and emotional abuse need help, just as much as other Autistics. And there is no question here: medical science and helping kids need to take priority over expedient political advocacy.

  • Nancy

    Stupidest thing I ever read.

  • Suzanne Warburton

    But my son with moderate autism had heaps of social interaction and love from me, also going to a baby class and baby gym class and swim lessons many many many times before the age of 2. Absolutely NO neglect. Articles like this lend to the idea that us mums with children on the spectrum were ignorant, stupid and neglectful. That is absolutely not the case for us. My husband and I adore our son.

    • Jill Escher

      The ghost of Bettelheim lives, sigh. My two kids with severe autism could not possibly have been more coddled and stimulated. Explain that.

      • Katie Wright

        Just disgusted by this post. Our families have worked long and hard to stop myth that bad parenting, lack of love, or worse abuse, cause autism. Now Charles Nelson argues that the appalling care given to Romanian orphans = autistic like children and how surprising it is that all these orphans are not autistic, like our children. Nelson’s big takeaway is that cruelty and social deprivation create troubled children. What does that have to do with autism- nothing. I have meet 100s of ASD families and even the most challenging autistic child is so loved.

        We do not have the time nor the money to expend on such useless and insensitive faux autism research.

        • Gnostical Turpitude

          This comment will probably be deleted but Nelson also forget to mention that the HIV epidemic among Romanian orphans overlapped the spike in autism. The former was caused mostly by excessive vaccination using shared needles and it’s possible the latter was as well.
          The country’s hyperactive vaccine policy relates to the Ceausescu dictatorship. Despite her six grade education, Elena Ceausescu, wife of the dictator between 1966 and 1989, was given a series of govt. posts, including health minister at one point. In that capacity, she responded to outbreaks of sanitation-related disease in orphanages by ordering the repeat mass vaccination of orphans. The glass and metal syringes used at the time weren’t sterilized very frequently. Ceausescu lifted the embargo against western goods solely for western vaccines. In any case, vaccination in orphanages was more common than Ceausescu’s bizarre policy of micro-transfusions for severe malnutrition– another route of HIV infection.

        • Gnostical Turpitude

          This comment will probably be deleted but Nelson also forget to mention
          that the HIV epidemic among Romanian orphans overlapped the spike in
          autism. The former was caused mostly by excessive vaccination using
          shared needles and it’s possible the latter was as well.
          The
          country’s hyperactive vaccine policy relates to the Ceausescu
          dictatorship. Despite her six grade education, Elena Ceausescu, wife of
          the dictator between 1966 and 1989, was given a series of govt. posts,
          including health minister at one point. In that capacity, she responded
          to outbreaks of sanitation-related disease in orphanages by ordering the
          repeat mass vaccination of orphans. The glass and metal syringes used
          at the time weren’t sterilized very frequently. Ceausescu lifted the
          embargo against western goods solely for western vaccines. In any case,
          vaccination in orphanages was more common than Ceausescu’s bizarre
          policy of micro-transfusions for severe malnutrition– another route of
          HIV infection.

  • Cindy

    What ethics committee approved a so-called study that would purposely leave children in an institution while others got “high quality foster care?” Children are not test animals. Whatever happened to the Hippocratic oath of doing no harm??

    • ClaudiaKat

      i was wondering the same thing. don’t these institutions have some kind of IRBs, or ethics don’t apply to people in far away, non-western places?

  • Kathryn Craig

    Are we going to start blaming refrigerator mothers again? Bruno Bettelheim abused the children in his care. Was his “refrigerator mother” theory all a plan so that he could safely abuse them? Repetitive behaviours are calming for all humans, and often for animals. Autism is far more likely to be an attack on the nerves and brain areas processing sensory information, affecting those with the most highly sensitive senses.
    We didn’t know our son had problems, except for a physical hearing loss, until he was in elementary school. So we didn’t treat him any differently in infancy from the other two, who are now high functioning neurotypical adults.

  • Claire Cameron

    We would like to add a comment from the author of this article, for clarity:

    “When the article speaks about deprivation, it is not maternal deprivation or a lack of a caregiver. Rather, it is deprivation on a grand scale — sensory deprivation and a lack of social interaction beyond the realm of normal experience at a time when these sensory and social experiences may matter most to development.

    Further, we cannot say that the autism features we see in these children is in fact autism or what we classically think of as autism. Rather, it may be something different with different causes and trajectories, but which shares some similarities with autism. It speaks to the heterogeneity of autism, and the fact that there is no single form of the condition.”

    • Wolfgang Engler

      Clarity is good. And so is completeness. Severe neglect and emotional abuse include “maternal deprivation or a lack of a caregiver”, but go ever so far beyond trivial omissions. Maltreated children often do see far worse “deprivation on a grand scale” regardless whether they reside with parents, outsiders, or institutions. And their stories show recurring and horrific themes: these children survive in closets or sealed off in basements, in filth and squalor. Frequencies of these types of maltreatment are significant and quite similar to Autism rates. And children facing such severe maltreatment often can and often do classify as Autistic on ADOS and ADI-R evaluations. Clinicians do see these cases, and all too often turn blind eyes, or even close ranks *against* child-victims, in order to protect careers. Reducing abuse victims to “confounding factors” reduces Autism Research to a Pseudo-Science of malice. Science needs objectivity and morality demands truth.

    • Katie Wright

      This is s terrible post, period. You did the community a disservice entertaining this Bettelheim-like theory. Autistic children grow up in homes with their families -99% of the time. Who is depriving them of love and care if not their parents? So you are implying that autistic children here may also be victims of deprivation. This argument speaks to nothing except re-inforcement of harmful stereotypes and further demonstrates the corrosive nature of arrogance in science. Dr Nelson has much to learn from our families.

  • Ethyl

    I read The Empty Fortress before reading Infantile Autism. I liked the second one more. Twenty years ago, speaking to a mother who had 4 children,only one of whom, the youngest male, was autistic, gave me great comfort because I could imagine that it might not be my fault that my son was autistic.

    That being said, we can all become better parents. We can use our hearts instead of looking to science for any answers. For some reason, this reminds me of Dr. Martha Welch’s work.

  • Katie Wright

    I wrote a reply to Ms. Cameron saying that this Nelson post was a mistake. Nelson’s autism analogy was a very poor one. Having spent many years working with abused children I know self stimming or anti-social behavior does not = autism. So much better to just admit a error when one is made and move on. Instead my comment was deleted.

  • First Last

    My Romanian father’s mother bragged to me that she never held her children. Some eastern-european cultures follow the belief that coddling children fosters weakness. Her arranged marriage on her fourteenth birthday may have influenced her attitudes also. The orphanage doesn’t shock me.

    I am ASD

    “Jimmy doesn’t play with other students. Jimmy has difficulty expressing himself” — 1st report card

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