Lynne Malcolm: Hello, you're with All in the Mind on RN, I'm Lynne Malcolm. Today, what extreme neglect can do to a child's brain and wellbeing.

Izidor Ruckel: Every Romanian orphan that has been adopted has been affected by some sort of living in an institution. There are things that I struggle with and there are things that I am left scarred with.

Lynne Malcolm: 33-year-old Izidor Ruckel is one of the Romanian orphans who was discovered when he was 10 years old in the fortress-like orphanage, the Hospital of the Irrecoverable Children. After the overthrow of the Nicolae Ceaușescu dictatorship in 1989, will, Romania was opened to the world for the first time in decades, and with it around 170,000 orphans were discovered languishing in the harsh conditions of 700 institutions. It left a generation of children who'd been brought up without care, stimulation or comfort. And as we'll hear shortly this prompted the most comprehensive scientific study on the effects of institutionalisation on children's wellbeing.

Izidor Ruckel contracted polio as a baby in Romania in the early 1980's, and his parents left him in a hospital and never went back.

Izidor Ruckel: My earliest memory is of a woman named Maria . She probably took the best care of me. She provided, she brought things from a home like shampoo, food. And nobody seemed to really mess with me and I never, ever remember having a hard time when she was around. And then just a few years later she was electrocuted from trying to heat up the water for the kids, and the only reason why I found out about it was because the workers knew that she cared for me so much and how much I loved her that they told me.

Lynne Malcolm: So that was a huge loss for you. How did you respond to that?

Izidor Ruckel: Really I didn't have any emotions. I think I was just shocked or stunned to hear that really, and everything just changed from there. For eight years straight we woke up at 5am, we have breakfast. After that we are put into a clean room, and all we do is rock back and forth, some cried and some hit themselves, and because kids kept hitting themselves some of them were put in straitjackets to prevent them from doing that. And for those that continued to misbehave they were drugged and that's what kept them sleeping and quiet. By lunchtime everybody woke up, ate lunch, and then after that the same thing. Dinner time, you got fed, you got cleaned up and you were put to bed. That's how life was for about nine years straight.

Lynne Malcolm: And what are some of your memories of your relationships with the other kids?

Izidor Ruckel: We knew that some of us were smarter than others. In a lot of cases we ended up teaming up, trying to beat up staff that were cruel and vicious to us. But it seemed like no matter what we did to people, they fought back even harder than what we could.

Lynne Malcolm: I believe too that you became a little bit of a leader with the other kids.

Izidor Ruckel: Yes. I tried to find ways to favour the staff so I wouldn't get beat up so much. So what they started noticing is that he's capable of leading, he's able to take care of the kids. So while they went in the office or go on different floors they'd put me in charge of the kids on my floor. And that was anywhere from 50 to 60 kids on my floor that I dealt with. But the one thing I didn't realise was the consequence that came with that. If they were unsatisfied with the way I dealt with things I got the severe beatings.

Lynne Malcolm: Izidor Ruckel will tell more of his moving story later.

Once the world was made aware of the devastating experiences of Romanian children like Izidor, neuroscientists who'd puzzled over why many such children have developmental problems, saw this group as providing an important research opportunity.

Charles Nelson, Professor of Paediatrics and Neuroscience at Harvard Medical School, led the charge to address this question empirically, and in 1999 launched the most significant scientific study on the effects of institutionalisation on children's development, it's called the Bucharest Early Intervention Project.

Charles Nelson wept when he first went to St Catherine's, the largest orphanage in Bucharest at the time.

Charles Nelson: My first visit there was really unbelievably heartbreaking because if you went through the wards of babies and very young children who they considered to be typically developing, it was heartbreaking to see children who had been basically ignored. There might be 15 children in a room with one caregiver who was really not paying much attention to them, and the first thing that stood out was the large number of children who are rocking or banging their heads or biting themselves. And if you went into a room of older kids who could walk, for example, they would walk up to you and sit on your lap, hold your hand, walk away with you, even though they'd never seen you before. And of course that's referred to as indiscriminate behaviour, and that indiscriminate behaviour is sort of a hallmark feature of kids who have been in institutions.

Lynne Malcolm: So that's when they are indiscriminately friendly or running up to you and cuddling you and they've never met you.

Charles Nelson: Correct. It's not a healthy behaviour, it's an adaptation to their environment which is everyone ignores them so if a stranger walks in it's a good way to get someone to pay attention to you. But the problem is that when strangers, say myself, acknowledges this by picking up the child or holding the child, it reinforces that behaviour and it indicates to them it's okay to go to strangers, which of course it's not okay to do.

Lynne Malcolm: After making some enquiries, Charles Nelson and his colleagues were invited by the Romanian government to do the Bucharest Early Intervention project. It's a randomised controlled trial comparing the effects of foster care as an alternative to institutionalised care for children who were abandoned at or shortly after birth. The study took random samples of 208 children living in institutions. They assigned half of them to be placed in good quality foster care and the other half remained in institutional care. They followed their physical growth, cognitive, emotional and behavioural development over the last 15 years.

There was no history of foster care in Bucharest when they started so it was no mean feat to find enough families to participate in the study. They were then careful to address the considerable ethical considerations involved in research like this.

Charles Nelson describes what they found when they first assessed these children in institutions.

Charles Nelson: I think the first thing that stood out to us after the baseline assessment was the range of the delays and impairments that we saw in the institutionalised children. So, for example, if the population average for IQ is roughly 100, these children had IQs in the mid-60s to lower 70s, which is many, many standard deviations below the average. In fact in many parts of the world, an IQ below 70 allows you to be classified as mentally retarded, an older term now of course, but the fact is the vast majority of our kids fell into that range.

They were very, very delayed in language, they showed many impairments in emotional development, including attachment. So an example would be there was a very high rate of indiscriminate behaviour. We try not to call it friendliness because it appears friendly but it's probably not friendly, it's just indiscriminate sociability.

The question then became what's going on in the brain? So when they were babies and toddlers, the really only option for us to look at the brain was to measure their electroencephalogram. So this is a way…you just place small sensors on top of the head, you can measure the brain's electrical activity. And what stood out most was that the children in the institution showed dramatic reductions in the brain's electrical activity. The analogy for this might be a 100 watt light bulb versus a 40 watt light bulb. So the amount of electrical activity generated by the brain was dramatically reduced in the institutionalised group.

Lynne Malcolm: Charles Nelson describes the mechanism they believe is operating when brain development is influenced by the conditions we are exposed to.

Charles Nelson: We know from decades of research that many aspects of brain development that occur after birth are dependent on experience. The classic example is vision. So a baby who is born with cataracts or a baby whose eyes are crossed, unless those are corrected early in life, the baby's vision doesn't develop in a typical fashion. So with that in mind, our assumption was that children raised in institutions are confronted with a world that's very depriving in many, many different ways.

As babies they might stare at a white ceiling for the first year of life when they are lying on their backs in the crib, there's no one to talk with them, no one to play with them, no one to stimulate them. So we think the deficits and the delays that we see in institutionalised children is basically the by-product of the lack of stimulation in their environment.

I should add that some institutions look better than other institutions, but nevertheless across the board, study after study has shown that children raised in any institutions do not do as well as children raised in families. And we think it has to do with the experience-dependent nature of the brain.

Lynne Malcolm: The treatment in the Bucharest Early Intervention Project was to provide high quality foster care to help the child form a good supportive relationship with a family.

What differences did they begin to notice between the two groups?

Charles Nelson: We started to observe changes in the children assigned to foster care versus changes in the children who had remained in institutional care. The children in the institutional group had IQs, as I said before, in the 60s and 70s. The children in foster care as a whole had IQs that were 10 to 12 points higher. However, as impressive as that is, when you looked at the age of placement—how old the child was when they were placed in foster care—we found that the children placed before 24 months had much higher IQs than the children placed after 24 months. We found the same…it's called a sensitive period…we found the same sensitive period in attachment and in EEG activity and in language. And in all cases, the children placed early had better outcomes than the children placed late. In fact the children placed after roughly 2 years of age looked very similar to the children who never left the institution.

The caveat here though is that in very few cases…we never saw children in foster care look as good as the children who never were institutionalised, those raised in families in the city. And we think the reason for this could be that on average we placed them too late, in our case around 20, 22 months, or it could be that there were subtle things that occurred prenatally or in the very first months of life in an institution that we could not get past by even placing them in good families.

Lynne Malcolm: But generally that very strong message is that they really need to be caught before they are two years old.

Charles Nelson: Absolutely. Now, we clearly have these sensitive periods that cluster around two, and the kids placed older than that don't do as well, but that does not mean that someone should say, well, that means I should never adopt a child who is older than two. What we're arguing is that the amount of effort required to get a child in an institution back to an even keel is much less if they are placed before two than if they are after two. And as you go older than two, the effort required to get a kid back to even keel is going to be considerable, and in some cases may not be possible.

Lynne Malcolm: So what were the areas in which children did not improve or were less likely to improve?

Charles Nelson: One was in most executive functions. Executive functions are this cluster of higher cognitive functions, so planning behaviour, inhibiting behaviour, cognitive flexibility. These are all examples of executive functions, and we didn't see and we continue not to see all the way through age 12 very much in the way of an improvement in the kids in foster care. Although we saw a dramatic reduction in kids with anxiety and depression, we saw no change in attention deficit disorder.

Lynne Malcolm: Charles Nelson, Professor of Paediatrics and Neuroscience at Harvard Medical School and key scientist in the Bucharest Early Intervention Project.

You're with All in the Mind on RN, Radio Australia, online and on your mobile device. I'm Lynne Malcolm, and we're hearing about the effects that neglect and deprivation have on the developing brain.

Izidor Ruckel spent the first 10 years of his life abandoned in a Romanian institution, but he was lucky because soon after the world became aware of the plight of thousands of orphans like him, he was adopted by an American family.

A year or so after the fall of the Romanian dictatorship, the late journalist John Upton presented the TV program 20/20 from the ABC news service in the United States. It exposed the sad plight of Romania's abandoned orphans. It shocked the world, showing emaciated children rocking back and forth in metal cribs, some in straightjackets, but it foreshadowed hope for the future for many. Izidor Ruckel recalls the TV crew's first visit.

Izidor Ruckel: It was a huge deal. There was a group that came in earlier than 20/20, his name was John Upton, and he brought a camera to Romania, and the purpose of bringing a camera was to find out which kids are eligible to go to America, their name, their age, their history, so he could find them families. Well, one day he called specific kids to the director's office. I mean, I was scared to death because I thought I was having an operation in the director's office with that camera, I thought that camera was actually a machine to operate on. Now, when 20/20 came in in 1990 we weren't so afraid of the camera anymore because by then we realised what it was.

Lynne Malcolm: Did you see that as an opportunity to let people know how you are being treated and perhaps an opportunity to escape?

Izidor Ruckel: Oh God no, I didn't even have the mentality to think like that back then. When I saw the Americans, I think our greatest joy about seeing them is that we don't have to be treated so bad anymore because they don't treat us like this when the Americans or anybody out of the country is here, so we try to jump on them, try to hang around them, try to keep them along as long as we could. But we had no clue or even have the mentality to know, oh my gosh, these people are here to rescue us and what can we say to get the word out of what's going on here.

Lynne Malcolm: Around this time, at the orphanage there was great excitement amongst the children and staff, and at the same time frightening rumours were spreading.

Izidor Ruckel: There were some staff that we loved and that really cared for us. They didn't want us to go to America and so they tried to scare us by saying, 'If you go to America they are going to kill you and they are going to sell your body parts.' At that moment my mind was made up; I don't care, at least I'm out of here. So there's nothing in this world that you can scare me with any more.

Lynne Malcolm: Through John Upton's efforts a number of children were adopted by San Diego families. Izidor was set to join his new parents Danny and Marlys Ruckel.

Izidor Ruckel: When I landed at the San Diego airport in 1991 I got off the plane and I see a large, large crowd of people. When I got into the airport I looked around and I thought, oh wow, this is huge, I loved it. And I kept looking around and I go, okay, where is my room. Everybody started laughing. And then of course, through an interpreter, this is not our house, this is just an airport. We drove home and when we got to the house there was a sign that said 'Welcome Izidor'. When the door opened a dog barked, a little Maltese, and that Maltese scared the heck out of me.

Lynne Malcolm: So what was it like, now to have a family and to have attention and have people look after you and care for you?

Izidor Ruckel: At first everything was fine and I had a family, but as far as interacting and feeling like I belonged in a family, I really didn't feel like I did. I just was very curious. But three days after I had been here, it was my mom's birthday and we all went out to lunch, we had an argument and we were arguing, fighting, my sisters and my mom, and my first words that I said to them was, 'No love you.' So just the whole family emotionally fell apart. And then I fell asleep and everything calmed down after that.

Lynne Malcolm: Izidor's relationship with his adoptive family settled down over the next few years, but when he was a teenager things flared up again.

Izidor Ruckel: I became rebellious, I took my anger out on them, and a lot of it had to do with the fact that I was homesick. I wasn't used to being treated with love, compassion. You know, if you do something right…I mean if you do something wrong you are disciplined for it. Well, my parents did discipline me but not in the way I wanted. If I did something wrong I was expecting to be beaten or hit upside the head, things like that. But I was so angry, I even hit my dad, and at that point that was the end, I moved out. And then we fought for a couple more years.

Lynne Malcolm: While he was living away from home Izidor heard through a friend that his whole family was in a car accident and his two sisters were in a coma.

Izidor Ruckel: When she told me that, you know, my heart sunk. And I told her, 'I really don't care.' So we went to their house and I think that was the first time we had talked in years without any argument or hateful words, and from there we built a relationship slowly.

Lynne Malcolm: So do you feel that you actually felt love then when there was a suggestion that you might lose them?

Izidor Ruckel: Yes. There was always love. The problem was is that I was very prideful. Inside you could be torn to pieces, you have a hard time breathing and you have a hard time swallowing. But on the outside you have to be a man and say this doesn't bother me a bit. You don't want people to know that you are vulnerable or that you have feelings, that you care.

Lynne Malcolm: In 2001 ABC 20/20 documentaries did a follow-up and flew Izidor to Romania to meet his birth parents.

Izidor Ruckel: And my biggest question to my family was; was I born this way with my leg disability? She responded with such enthusiasm, like, no, you were not born that way, you were infected with something and you became paralysed. It felt a relief to know that I wasn't born disabled. My second question to my mom was; why did you abandon me? And that's when she explained to me; you were sick, we took you to the hospital, and six weeks later when your grandma went to pick you up she realised something was wrong with your leg, so we took you right back to the hospital. The doctor would not even explain anything to us, and the hospital can keep you up to 3 years old. After that, if your parents don't show up then they have to transfer you into an orphanage.

Lynne Malcolm: And so how did you feel towards your biological parents when you met them? What were the emotions that were going on I guess from both sides?

Izidor Ruckel: You know, it's an interesting question. I had mixed feelings about my adopted family because I didn't want them to be hurt, I didn't want them to feel like I was going to run away from them after all the things I put them through. But when I met my birth family, I was not angry with them, I did not hate them, and the reason for that is because as I was growing up I learned about the Bible, and one of the things that God talks about in the Bible; if you do not forgive those who have done wrong against you, then how do you expect me to forgive you? And I realised as an adult, sometimes parents try to do what's in the best interests of their child, but they don't know how much their child is suffering behind closed doors because they are never allowed to see the reality of the institution, for example.

Lynne Malcolm: Izidor Ruckel.

The scientists with the Bucharest Early Intervention Project continue to follow the progress of the children in the study and are about to do their 15-year follow up. What are their future aims with the research?

Charles Nelson:

Charles Nelson: We are very interested in how these children make the transition to adolescence. I mentioned that early in the study we found that the children showed reductions in their brain activity, their brains' electrical activity. They also had smaller heads, which was disconcerting. When they were 8 to 10 we did magnetic resonance imaging, which is a way to take pictures of the anatomy of the brain, and what we found was a dramatic reduction in what's referred to as grey matter and white matter. So grey matter would be the cell bodies of brain cells and some of the extensions of these cells, and white matter is when certain parts of the cells have a coating of myelin that speeds up information.

So these kids had less white matter and less grey matter. The kids in foster care did show a little bit of an improvement in white matter, but the fact is this reduction in grey and white matter, coupled with the smaller heads and the underpowered EEG suggest to us that these kids have either lost brain cells or they've lost the connections among brain cells. And the sad part is that unlike other cells of the body, when you lose a brain cell you don't make a new one to replace it. So once it's gone, it's gone.

So imagine then a brain that has fewer neurons and fewer synapses, the connections between cells, on top of a child who already has a lot of developmental delays and impairments. As they get into adolescence and make the transition into adulthood, the risk of them falling even further behind and becoming even more of a challenge is going to be considerable.

Lynne Malcolm: But at the same time, even though they may have less brain cells, it is still possible with the right environments to build the connections, isn't it, the wiring, as they put it.

Charles Nelson: Exactly. So this whole notion of neuroplasticity is important here. The question is for children who have lost brain cells and brain connections, if they are in a really enriched environment, can they compensate for that to some degree? And only time will tell if that's the case. So that's one area of intense enquiry on our part, which is adolescent measures, which would include many of the executive functions we talked about, relationships with peers and with intimate partners.

We've also gotten much deeper into the biology. So when they were 8 to 10 we started doing magnetic resonance imaging on them so we could look at their brain anatomy, and we've started to a lot of genetics and epigenetics as well. And the logic there is are the effects that we see due entirely to their experiences, or might in some cases those experiences interact with underlying genetics to lead to a certain developmental profile. So that's the idea of looking at genetics and epigenetics.

Lynne Malcolm: Izidor Ruckel, now 33 years old, reflects on the effects of his institutionalised past, and his hope for the future.

Izidor Ruckel: My mentality in the orphanage was completely different from the mentality I have here. I could not think for myself, I followed orders. Have I been mentality traumatised of what I went through? Yes, I was, and I got out of it pretty quickly actually when I came here. The only sad effect I had left when I came here for a long time was rocking back and forth when I went to sleep. I don't do that anymore. I think every Romanian orphan that has been adopted has been affected by some sort of living in an institution. As much as I would like to deny mine, I'm not a perfect human being. There are things that I struggle with and there are things that I am left scarred with. Even educational-wise, I'm not the brightest person, but I do the best of my ability to move forward.

Lynne Malcolm: What would you say are the main areas in which people do struggle because of that background?

Izidor Ruckel: Most of them are in desperate search of wanting to find their birth family to find out their past. But I think their biggest struggle is educational-wise. Second is some of them have a hard time attaching or being able to build in as a family.

Lynne Malcolm: In the area of emotions and relationships?

Izidor Ruckel: Yes. I believe people can overgrow some mentalities. Now, as far as the expansion of their brain, anything is possible no doubt. A child can be completely fried mentality-wise, no conscious, no memory, but at the same time if you are meant to remember things, the possibilities are out there. I believe that sometimes God has a plan for you when you don't know it, and sometimes he's going to say, you know what, all the beatings, all the suffering you go through, I'm still going to keep your mind intact for a reason, so you can raise awareness for other people who are suffering the way you did.

Lynne Malcolm: So what are your hopes for the future?

Izidor Ruckel: One of my dreams is to be able to travel back and forth to Romania. I want to help in Romania. It's not just for orphans, it's for individuals who live on the streets, individuals who struggle so hard that they can barely hold on to life itself. I want to be able to help people like that.

Lynne Malcolm: Thanks to Izidor Ruckel for sharing his story with us today. And you can find out about his passion to help others who weren't as lucky as he was on his website which we'll link to on the All in the Mind site.

After years of studying the effect of institutionalisation on children's development, what conclusions has Charles Nelson drawn?

Charles Nelson: One message I think is that there really is little place for institutions among kids who are parentless. And I think our study shows that the best thing you can do for those kids is to put them into a family. The second thing our study shows is that we should put them into a family as early in life as possible, we should not let them languish in a bad environment. And that begs the question of what are the implications of this work for children outside of Romania? So take the US as an example. There are thousands of children who grew up in neglectful or abusive homes, and what our work shows is that the longer those kids stay in those environments, the worse their developmental outcome, and if at all possible, to get those kids out when they are babies, before they are toddlers, because they will have a better chance of going back to an even keel again.

Lynne Malcolm: So how much change have you seen in Romania's policies and practices regarding children and institutionalisation since you began looking at it?

Charles Nelson: That's actually been very rewarding. So when you do a randomised controlled trial like this, if early in the study you find that the group getting the intervention is doing much, much better than the group without the intervention, ethically you should either offer everyone the treatment or you should stop the study so it's not unfair. In our case there wasn't enough treatment to go around, so we couldn't put everyone in foster care, and if we stopped the study everyone in foster care would have gone back to the institution.

So we called a press conference in roughly 2002 and we announced our findings to the country, and this was also around the time that Romania was asking to be let into the EU. Within a year or so they passed legislation forbidding the institutionalisation of any child under two unless they were handicapped, then they also started a program of government foster care. So both of those things in some respects are due to this project. And even more rewarding is the fact that agencies like UNICEF have picked up on this and they are using this project as support for their position that there should be no institutionalised children in the world, that countries need to find an alternative to institutionalising abandoned or orphaned kids. And keep in mind that there is at least 100 million of those kids around the world and 8 million live in institutions. So this is a worldwide problem.

Lynne Malcolm: Charles Nelson, Professor of Paediatrics and Neuroscience at Harvard Medical School, and author, along with Nathan Fox and Charles Zeanah, of their book Romania's Abandoned Children which is published by Harvard Press.

Izidor Ruckel's memoirs are recorded in his book Abandoned for Life, and he has co-produced a documentary called Given our Chance. Details are on the All in the Mind website. You can also read a feature article in RN's White Paper on Romania's abandoned children.

That's the final in this season of All in the Mind, I'll be back at the beginning of October this year with a new season of programs on all things mind, brain and behaviour, so do join me then. In the meantime visit our website where you can listen to all previous episodes of the program.

From next week at this time, Amanda Smith will bring you another wonderful season of The Body Sphere, so don't miss that.

Today's sound engineer is Ann-Marie de Bettencor, and thanks also go to Diane Dean and Katie Silver.

I'm Lynne Malcolm, looking forward to being with you later in the year. Bye for now.