Hundreds of Young Swedish Asylum-Seekers Are Falling Unconscious. Why?
Suzanne O'Sullivan on the Cultural and Traumatic Elements Behind a Very Strange Phenomenon
The earliest official reports of resignation syndrome appeared in 2005. Rumor suggested it had been around since the 1990s, but the number of children affected escalated at the turn of the century. Between 2003 and 2005, 424 cases were reported. There have been hundreds more since. It affects both boys and girls, but with a slight preponderance of girls.
The first children to fall ill were usually admitted to hospital, where they underwent medical investigations and treatment. Once test results came back as normal, there were the inevitable accusations that the children were pretending to be sick, which is so often the fate of people whose physical disability cannot be explained by an organic disease process with measurable biochemical or structural anatomical abnormalities. But, flying in the face of that suggestion, children as young as seven remained completely unresponsive, even during long-term hospital admissions. Many of the children have been subjected to medical testing and inpatient care under the supervision of a variety of specialists. Some early cases were admitted to intensive-care units, separated from their parents and kept under close medical scrutiny, but they still didn’t wake up. No child could sustain such a prolonged apathetic state voluntarily.
Some people’s attention turned to the parents. Were the children being sedated? Or even poisoned? One media report suggested that a doctor had seen a parent giving a child liquid medicine. But that is easy to check, and blood and urine samples showed no evidence of any intoxicant. Some still said that this was Munchausen’s syndrome by proxy—a type of child abuse in which a parent or carer fabricates illness and seeks unnecessary healthcare for their child. Supporters of that theory postulated that parents were coaxing or coercing the children into developing the condition. One doctor said that the families were using the children as Trojan Horses to gain admittance to a new country for the rest of the family. There were claims that nurses had seen children who were supposed to be unresponsive fighting against attempts to insert a nasogastric tube.
Could Nola, one of the two patients I was studying, be roaming around the apartment when the curtains were pulled? Did the two little girls jump into bed, under instruction from their parents, whenever a visitor knocked on the door? When I visited Sweden in 2018, other than suspicious rumors in newspaper articles, there was not a grain of evidence to support this view. Then, in October 2019, an adult came forward and said that, as a child, she had been coerced into being “apathetic” by her parents. That created a brief furore of accusations. It risked making every family look guilty. But there will always be people who cheat disability payments and insurance companies, people who take advantage of situations for their own gain; that should not be seen to imply that every member of a group is guilty.Some early cases were admitted to intensive-care units, separated from their parents and kept under close medical scrutiny, but they still didn’t wake up.
Other than that sad case, which amounts to child abuse, no official enquiry has recorded deceptive behavior in the resignation-syndrome children or their parents. Even children admitted for long-term care into psychiatric units displayed no behavior that would support the accusation of Munchausen’s syndrome by proxy. Children did recover once they had been offered asylum and hope was restored to their lives, but that recovery was in line with recovery from any chronic serious illness—gradual and dependent on the length of illness and degree of disability present.
People who have psychologically mediated physical symptoms always fear being accused of feigning illness. I knew that one of the reasons Dr. Olssen was desperate for me to provide a brain-related explanation for the children’s condition was to help them escape such an accusation. She also knew that a brain disorder had a better chance of being respected than a psychological disorder. To refer to resignation syndrome as stress induced would lessen the seriousness of the children’s condition in people’s minds. It is the way of the world that the length of time a person spends as sick, immobile and unresponsive is less impressive if it doesn’t come with a corresponding change on a brain scan.
Biological correlates are often used to give credence to the experience of psychosomatic disorders. An objective change on a blood test or scan allows others to believe in the suffering. It is not surprising, therefore, that a great deal of thought has gone into trying to understand the biomechanics of resignation syndrome. Not only would it be of scientific interest and guide treatment, but, more than anything else, understanding the biomechanics would validate the children’s level of disability. Various incomplete theories have attempted to shed light on the biology of the disorder. Doctors have noted a fast heart rate and high body temperature in some of the children, which seems to suggest that a stress response mediated by hormones or the autonomic nervous system could play a part in the disorder.
A single small study looking at four children showed a lack of the normal daily variation in the level of the stress hormone cortisol, lending a little weight to the stress hypothesis. In the same vein, one group of scientists speculated that stress hormones in pregnancy affected brain development and reduced the children’s ability to cope with stress later in life. The problem with these observations and theories is that neither stress hormones, the autonomic nervous system, nor poor brain development would account for the unusually sustained and profound physical manifestations of the disorder, nor the strange geographical distribution. There are asylum-seeking families all over the world, but none have responded to their situation like the children in Sweden. Stress is common, but resignation syndrome is not.
Some scientists likened the disorder to catatonia, a condition in which the affected person is immobile, with little or no physical response, but remains aware. Catatonia can be caused by brain disease, but it also occurs in the context of psychiatric conditions. Although poorly understood, it has been associated with a variety of neurotransmitter and brain-scan irregularities. Specialist brain scans have shown metabolic changes in regions of the frontal lobes in people in a catatonic state, and Swedish scientists are keen to carry out more detailed brain scanning on the resignation-syndrome children to find out if this is also the case for them. While there is something in the description of catatonia that resonates with what is happening to Nola and Helan, resignation syndrome lacks the characteristic stiffness and posturing of that condition. Catatonic patients look like animals posed by taxidermy; Nola was a rag doll.
One ongoing uncertainty has been whether or not the children are aware of their surroundings, particularly as they seem unwilling or unable to clear up this mystery themselves. They are sometimes referred to as being in a coma, but many have been observed to cry or exhibit occasional eye contact, which suggests otherwise. Patients in persistent vegetative states have been assessed for consciousness using functional MRI, so scientists have proposed testing in that way to solve the “awareness” dilemma in resignation syndrome.
Not all the medical interest in this disorder has focused on blood tests and brain scans. More psychologically minded explanations have compared resignation syndrome to pervasive refusal syndrome (also called pervasive arousal withdrawal syndrome—PAWS), a psychiatric disorder of children and teens in which they resolutely refuse to eat, talk, walk or engage with their surroundings. The cause is unknown, but PAWS has been linked to stress and trauma. The withdrawal in PAWS is an active one, as the word “refusal” suggests; it is not apathetic. Still, as a condition associated with hopelessness, it does seem to have more in common with resignation syndrome than other suggestions.They are sometimes referred to as being in a coma, but many have been observed to cry or exhibit occasional eye contact, which suggests otherwise.
The resignation-syndrome children became ill while living in Sweden, but most had experienced trauma in their country of birth. It seems likely, then, that this past trauma would play a significant role in the illness. Perhaps it is a form of post-traumatic stress disorder? Or could the ordeals suffered by the parents have affected their ability to parent, which in turn impacted on the emotional development of the child? One psychodynamically minded theory is that the traumatized mothers are projecting their fatalistic anguish onto their children, in what one doctor described as an act of “lethal mothering.”
There is clearly much of value in investigating both the psychological and biological explanations for resignation syndrome, but even when taken together they fall short. Psychological explanations focus too much on the stressor and on the mental state of the individual affected, without adequately paying attention to the bigger picture. They also come with the inevitable need to apportion blame, passing judgement on the child and the child’s family. They risk diminishing the family’s plight in the eyes of others. Psychological distress simply doesn’t elicit the same urgent need for help that physical suffering does.
But the biomedical theories are even more problematic. The search for a biological mechanism is in part an attempt to ensure that the children’s condition is taken seriously, but it also threatens to neglect all the external factors that have propelled the children into chronic disability. MRI scans that try to unpick the brain mechanism of resignation syndrome are useful research tools and might offer general insights into how the brain controls consciousness and motivation, but there is something faintly ludicrous about expecting scans done on individuals to explain or solve a group phenomenon.
As a neurologist, people expect me to be especially interested in the brain mechanisms that cause disability. But, standing in the bedroom shared by Nola and Helan, the confused neural networks keeping these small children in bed seemed only to be an end point and, therefore, the least important part of what created their situation. A whole lifetime had led Nola and Helan to this place, where they lay in the confines of a Swedish bedroom, the curtains pulled on a sunny day.
Biological and psychological hypotheses for resignation syndrome are reductionist, in exactly the way that Engel’s biopsychosocial theory tried to address. They focus on the inside, while failing to incorporate what is on the outside—the odd geographical clustering. In fact, there is even more to the story that helps demonstrate the futility of an overly individualistic approach to the children’s situation. Not only is resignation syndrome restricted to children seeking asylum in Sweden, it is restricted even within that very specific group. It doesn’t affect all asylum seekers; children from countries of the former Soviet republics and from the Balkans are more likely to suffer from it. Yazidi and Uyghur people, ethnic groups that have recently been subject to a great deal of persecution, are also disproportionately affected. It has not been reported in refugees who originated in Africa, and rarely in any other nationality or ethnic group.
If psychogenic and biomedical theories fully accounted for the cause of resignation syndrome, then why do we not see it happening all over the world? And why doesn’t it happen to people of different ages and backgrounds? Psychological trauma and hardship exist in every society, and all our brains are biologically the same. That the disorder picks off its victims so selectively shows the error of viewing it as only a biological problem, concerned with hormones and neurotransmitters, or a psychological problem, linked to the personality of an individual.
It seemed obvious to me, having heard the girls’ story, that there was something to learn from the cultural specificity of the disorder. It suggested that resignation syndrome may not be a biological or psychological illness, in the Western sense; it may in fact be a sociocultural phenomenon. If so, then brain scans and cortisol levels would be largely meaningless.
After our visit to see Nola and Helan, Dr. Olssen and Sam took me back to their home to stay for the night. Sitting on the terrace, eating a dinner of salmon and salad, I could see red wooden cottages and barns punctuating a rolling green landscape. As we ate, we talked about the children, and I took the opportunity to raise the issue of the strange clustering of the disorder in this small group of marginalized people. Dr. Olssen did not look happy at that. I sensed I was a disappointment to her. I was not the great neurologist who would provide the perfect biological explanation for resignation syndrome and then write to the Swedish Migration Agency and secure asylum for every child who needed it.
“It’s not happening because they are Yazidi,” she said, when I touched on the subject.
But that was not the culture to which I was referring. Her own culture, now shared with the children, interested me just as much as their country of origin and ethnicity. Asylum seekers of Yazidi or Uyghur ethnicity, and those of Balkan or Soviet origin, do not get resignation syndrome when they flee to countries other than Sweden. If societal influences lead to this disorder, they do not stem from the country of origin, but rather from some combination of circumstances. The vulnerabilities created by the children’s past experiences were important, surely, but so too was their journey to and their life in Sweden. After all, Nola and Helan had spent the vast majority of their lives there.
Sweden had been welcoming to the family when they arrived. They were granted temporary residency and given a home pending their application for asylum. The process took three years to get started in earnest, at which stage both girls were in school. They spoke fluent Swedish. They had established friendships. I wondered if they knew that people saw them as different and that their home was potentially only temporary. Once underway, the application process was drawn out over several years. Although the family was not on trial, they felt as if they were interrogated rather than listened to. The asylum system seeks to find the mistakes that disprove an applicant’s case, rather than looking for evidence to prove it.
Asylum-seeking processes all over the world are subject to similar problems. Families making an application have usually come from a place with a poor human-rights record, where the authorities cannot be trusted. The application requires asylum-seeking families to face panels asking them to prove that their stories are true. Questioning can be intrusive and combative, and rarely takes into account what the applicant has already suffered. They are forced to defend their stories in an intimidating environment, after which a small group of people decide whether those stories are credible or not credible. The children are usually obliged to be present for the hearings.
Sweden has a reputation for being liberal, less racist and less hostile to immigrants than many other countries, and, until fairly recently, families with children suffering from resignation syndrome were offered automatic asylum. In 2014, the Swedish prime minister asked the population to “open their hearts” to asylum seekers, and there followed a year in which a record number of foreign nationals arrived in the country. But the mood soon changed: in keeping with a worldwide trend, Sweden saw a rise in right-wing politics and anti-immigrant rhetoric, and the number of new asylum cases subsequently dropped drastically. It’s possible that hostility to immigrants and heightened tensions have contributed to the spread of resignation syndrome, but there were decades of apathetic children before the tide turned against asylum seekers.
Given that resignation syndrome is considered by many to be caused by hopelessness, and can therefore be treated by the restoration of hope, it is perhaps not far-fetched to conclude that the lengthy asylum process, through three stages of hearings, could be a contributing factor to the development of the disorder. Nola and Helan have spent almost their entire life-times alternating between anticipation and despondency. That has physical consequences.
Excerpted from The Sleeping Beauties: And Other Stories of Mystery Illness by Suzanne O’Sullivan. Reprinted with permission of the publisher, Pantheon, an imprint of Knopf Doubleday. Copyright © 2021 by Suzanne O’Sullivan.