Gellert Tamas: The debate on apathetic children in Sweden is dishonest

 Gellert Tamas, Dagens Nyheter, 29/10/2021
Translated by Fausto Giudice, Tlaxcala  

The debate on apathetic refugee children has been raging for almost 20 years in Sweden. A new book by neurologist Suzanne O'Sullivan highlights mental, physical and environmental factors for the disorder - yet the Swedish media dismiss the apathetic children as malingerers, writes Gellert Tamas.

Could it be that the hotly debated question of apathetic refugee children affected by the resignation syndrome has finally been answered? It's not impossible, at least judging by the international reception of a new book on resignation syndrome by renowned neurologist and multi-award-winning author Suzanne O'Sullivan.

 

Neurologist and author Suzanne O'Sullivan. Photo: Guillem Lopez/TT

The debate has raged for nearly 20 years. Around the turn of 2005-2006, 10,000 people demonstrated to stop the ongoing deportations, while the media focus quickly changed. According to a survey by the Mid Sweden University, manipulation was the most common - 42% of articles - explanation for the children's condition. They were allegedly faking or being poisoned by their parents - all with the aim of obtaining a residence permit.

Then the debate turned. The first research findings were published in leading journals. Blood tests and tests of stress hormones, among other things, showed that neither malingering nor poisoning could explain the children's condition. In 2014, the National Board of Health and Welfare (Socialstyrelsen) introduced the resignation syndrome as a separate diagnosis code in the health care system. This seemed to settle the issue.

Although the research is still incomplete, all the research that does exist shows - despite differences of opinion on, for example, the view of hospital versus home care, the degree of parental involvement in the care process and the importance of residence permits for the recovery process - that manipulation cannot explain the condition itself, although there may be such individual cases. This is the same picture I have painted myself in both a book and in investigative television programmes.

In the autumn of 2019, the debate flared up once again, after two now-adults told me that as children they were forced to play apathetic by their parents. The focus once again fell on the issue of manipulation. Although there is no new research to overturn previous findings, or support the claim of mass manipulation, several commentators have argued that there is now compelling evidence; virtually all of the 1,000 cases of children diagnosed with symptoms resignation have in fact involved manipulation.

 The tone has been heated and not without political undertones. PM Nilsson, political editor at Dagens Industri, in an interview on Radio Sweden, dismisses withdrawal symptoms as “this strange story of apathetic children who were exploited by their parents to simulate a condition that made them pitiful cases.”

In the tabloid Expressen, Peter Santesson, former director of Timbro publishers and editor-in-chief of the magazine Kvartal, calls for a “sorry-we-were-wrong” statement from all the doctors and researchers who have concluded that the hildren are really sick.

The list could go on and on.

Expressen in particular, led by the paper's culture head and deputy editor-in-chief Karin Olsson, has conducted what can best be described as a campaign for the mass manipulation theory, with recurring articles both from the staff and on editorial and op-ed pages.

The recent conversation between Karin Olsson and Agnes Wold in the Express media podcast "Lägg ut" - under the heading “Media to blame for the apathetic children” - is a clear example. The choice of interlocutor alone is telling. Wold is a professor of clinical bacteriology, not a paediatrician. She has practically not worked clinically since completing her training and thus lacks any experience of working with apathetic children. Despite this, Wold is completely convinced of her case. The apathetic children are one big hoax. She dismisses doctors and researchers who have come to the opposite conclusion as “dogmatic people”. Wold describes her own level of knowledge as follows: “I know the facts!”

Olsson and her co-host raise virtually no critical questions. No dissenting voices are heard. No one who has worked with or researched apathetic children is invited. The exchange of words between Wold and Olsson is a conversation between two convinced souls.

Although Olsson states that “we don't know how many of them simulate”, she concludes, a few sentences later, that all apathetic children have been forced to simulate: “Everything suggests that a very large proportion of these children ... are subjected to unimaginable child abuse, enormous abuse in other words. A thousand children! It's unbelievable!”

O'Sullivan shows clear similarities and connections between the condition of the apathetic children and other similar “outbreaks”.

This spring saw the publication of Suzanne O'Sullivan's book ‘The Sleeping Beauties: And Other Stories of Mystery Illness’, based on the story of apathetic children, by the internationally renowned Irish neurologist and author.

According to O'Sullivan, symptoms of apathy are neither a new nor a “mystery illness”, but rather a fundamentally psychosomatic condition, whose apparently “sudden” and often geographically limited outbreaks are hardly as unique as they are first perceived to be.

Drawing on her twenty years of experience in clinical work with psychosomatic illnesses, O'Sullivan embarks - figuratively and literally - on a journey around the world. And O'Sullivan shows clear similarities and connections between the conditions of apathetic children and other similar “outbreaks”; with the so-called “sleeping sickness” in Kazakhstan, with ‘grisi siknis’ - involuntary muscle contractions and pasms in mainly younger women in some towns on the east coast of Nicaragua, and with a highly publicized outbreak of Tourette-like involuntary movements and sounds, tics, followed by difficulty in walking and moving, among a number of high school girls in the town of Le Roy in the State of New York.

Neurology sees psychosomatic illnesses, or functional somatic problems as they are known today, as clinical disorders caused by abnormal impulse activity in the brain's neurons, where the brain's and body's signalling systems are at odds, or as we say in everyday language: an interplay between body and soul, between mental and physical processes, where psychological vulnerability can lead to physical symptoms.

This picture also characterises resignation symptoms, writes O'Sullivan, but she adds that psychological and physical explanations alone are not enough; rather, we are dealing with a biopsychosocial illness, a term coined in the 1970s to highlight the variety of causes that can lead to somatic, i.e. physical, problems. Cancer, for example, is a biological disease but has both psychological and social consequences. Other illnesses, such as depression, are essentially psychological, but can also lead to somatic problems such as weight problems, sleep problems or hair loss.

To understand the illness of apathetic children, the spectrum must therefore be broad, writes O'Sullivan. We also need to look at the social and cultural context of the children, not just in terms of the culture from which the child and their family come, but also the cultural context of Sweden, which is where the condition developed. As an example, she mentions the stress of the uncertainty of year-long asylum processes, but also the role of the media.

“Resignation syndrome is a language,” O'Sullivan writes. “It exists because it gives children an opportunity to tell their story. Without it, they would completely lack a voice.”

‘The Sleeping Beauties’ has received widespread international attention. The New York Times calls it “fascinating and provocative”. The Guardian's reviewer writes that this “well-written and compelling book” may prompt all those “powers that be” who have questioned the apathetic children, and others living with similar symptoms, to “listen, act and help”. The New Statesman argues that O'Sullivan “powerfully demonstrates how false” the accusations of ‘faking’ are and wonders if it is not rather that her book, based on years of experience of “how society affects illness, can help us solve medical mysteries.”

Whether O'Sullivan is right or wrong, her 300-page book is an almost overtly clear picture of the climate of debate surrounding apathetic children

That resignation symptoms are about functional somatic problems is consistent with a previous study in Sweden showing that apathetic children exhibit neurobiological markers. And O'Sullivan's focus on the illness as biopsychosocial is also in line with the ‘multifactorial’ model of explanation that has been the predominant one among Swedish paediatricians and child psychiatrists, and which - like O'Sullivan - emphasises psychological, physical and environmental factors as well.

It is hardly a coincidence that the world's oldest and perhaps most prestigious scientific association, the Royal Society, has nominated ‘The Sleeping Beauties’ for the ‘Science Book of the Year’ award.

Whether O'Sullivan is right or wrong, her 300-page book is an almost overarching picture of the climate of debate surrounding apathetic children. While O'Sullivan's work has been celebrated, debated and praised internationally, it has been completely silent in the Swedish media, apart from an article in the journal Forskning och Framsteg [Research and ProgRess]. It is a silence that speaks louder than words.

More than ten years of research in Sweden, and international voices like O'Sullivan, all of which show that children's illness is real, are dismissed by Expressen's Karin Olsson, for example, as “the myth of the apathetic children that Gellert Tamas cultivated and that was reproduced by other journalists year in and year out.”

Olsson asks rhetorically, “How do you see through journalistic cheating?” It's a question as apt as it is sadly relevant to Olsson's - and many other Swedish commentators' - own so-called journalism about the apathetic children.