What would you say if there was a little-known medical condition — so little-known that you've probably never heard of anything like it before — that affected only children, and only children within the borders of the country of Sweden, and only children of families awaiting decisions on their immigration status? It's called resignation syndrome, and it involves the child gradually withdrawing from friends and socialization, and then showing less interest in food, and ultimately lapsing into a state of perpetual unconsciousness? These children need to have feeding tubes inserted so they don't die of thirst or starvation; they need to have physical therapy so they don't develop bedsores or other symptoms of immobility; and they do not wake up at all. Their parents feed, nurture, and bathe them. There is not a thing physically wrong with them — for real — and yet they remain in a state of coma. The only possible explanation anyone's come up with is withdrawal from the fear of being deported. Would you say that's plausible? Would you say resignation syndrome is made up? Or would you seek some third option — that maybe it's real, but misdiagnosed? Today we're going to find out.
In 2019, the Netflix documentary short film Life Overtakes Me depicted three families who had attempted to immigrate into Sweden from former Soviet Bloc countries, with varying success. All three families had frightening escapes from their home country, in which they'd been ethnic minorities subject to discrimination and sometimes violence; they'd had anxious and uncertain waiting periods in Sweden with temporary visas soon to expire; and had at least one child who had lapsed into resignation syndrome. These children, often under the age of 10, seemed perfectly normal and happy. They had adjusted to life in Sweden, going to Swedish schools, having Swedish friends; and then, for no clear reason, gradually became less and less responsive until they went into a perpetual state of unconsciousness from which they could not be awakened. They required full time medical care just to stay alive — with not a thing physically wrong with them.
Were they faking? Was this real? Is this something that can happen to anyone, not just immigrants to Sweden?
When the movie came out, it did so waving a number of red flags. First, one Swedish journalist whose comments were part of the voiceover suggested that resignation syndrome only happens in Sweden, and only to immigrants — both of which are medically implausible. Medical conditions don't care what country you're in, and they don't care about your legal status. But these incongruities made a little more sense when viewed in the context of another red flag: the movie was accompanied by allegations that the children's illnesses had been faked, faked for the purposes of garnering sympathy from the Swedish immigration authorities. A fake illness, invented by a few families to grease their residency in Sweden, would indeed be found only in Sweden, and only among aspirational immigrants. And that would also explain why such a thing as resignation syndrome would seem so extraordinary to the rest of us.
So, allow me to insert a brief personal anecdote here. My wife, as some of you may know, is a mental health professional. I explained resignation syndrome to her and showed her a bit of the movie. She scoffed, and said yeah, that's not at all extraordinary. The idea of children going into comas due to a stressful life situation did not strike her as remarkable in the least; it's rare, but it happens. In fact, at her facility, she deals with children who are one step away from that, already withdrawing from socialization and not eating; and if they go any further, they are then the responsibility of higher level care facilities. And it is most certainly not unique to Sweden or anywhere else, and most certainly not unique to immigrants or anyone else. To you and I, resignation syndrome may seem astonishing and almost unbelievable; to a mental health professional, they may not know it by that name, but there is nothing surprising about it. When you deal with PTSD and people suffering dissociative episodes on a daily basis, resignation syndrome is just another dab of color on the palette of human coping mechanisms.
And so, based on hearing that, I decided that this was worthy of a Skeptoid episode, because I'm quite sure there are other people who — like me — found this almost too hard to believe it was real. And this concludes the personal anecdote segment of this episode.
It didn't take much reading of the literature for me to decide that the allegations of faked cases were not worth including in this episode. The condition itself is real; and whether or not anyone has ever tried to fake it for immigration (or other) purposes by drugging their child, really isn't part of the picture of the illness itself. Because it's the real cases, and the real humans impacted by it, that are our focus today.
So Job 1 was to figure out if this is indeed unknown and new to the psychiatric literature. It was pretty easy to learn that it's not brand new, but also not very old; this first began to be documented and treated as a distinct condition in the 1990s. It's more generally known today as traumatic withdrawal syndrome, but we also find it described as depressive devitalization and pervasive arousal withdrawal syndrome. It's associated with pervasive refusal syndrome, a condition usually affecting children between the ages of 7 and 15, in response to trauma such as witnessing violence, in which the child refuses to eat, drink, talk, walk, accept any help, or perform basic self care, often angrily so. Pervasive refusal syndrome may be the lead-in to resignation syndrome. Neither are yet in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) or the ICD-11 (International Classification of Diseases) as diagnostic criteria are not yet established, however they are generally recognized.
The literature on pervasive refusal syndrome is a relatively new field, beginning in the 1990s like resignation syndrome. As both involve refusal of food, both require nasogastric feeding through a tube. The most severe symptom, the comatose state, is what differentiates resignation syndrome, which is now recognized by the Swedish National Board of Health and Welfare. Authors of a 2019 paper published in Clinical Child Psychology and Psychiatry did a literature search for all of these terms, and found some 195 articles had been published on it. Cases lasted from 4 to 98 weeks — that's almost two years. The trauma experienced by the children included witnessing sexual violence, threats of persecution or kidnaping, harassment, lack of protection, direct physical threats, experiencing sexual or physical violence, witnessing violent deaths, intimidation, pets being killed, and property destruction. All heavy stuff for young children.
In the movie Life Overtakes Me, we see the parents taking loving care of their unconscious child — blending nutrients to pump into the feeding tube, bathing them, reading to them, doing physical therapy to keep their joints limber — it's the vast majority of the time when the cameras weren't rolling where one further key ingredient of the syndrome probably took place. Parental mental illnesses are found in two thirds of the cases. As the parents generally lived through those same types of trauma, and in addition now find themselves charged with protecting their family during these difficult and often unsuccessful efforts to seek asylum and residency status, it's hardly surprising that a majority of them also suffer from PTSD, anxiety, or depression. Having suffering parents in the house is something children notice. Day after day, month after month, these children likely see their parents crying, perhaps arguing, showing all the outward signs of a losing battle. That's even harder for children to live with, and their bodies literally shut down to block it out.
It is clear that Sweden is not the only place where cases are reported. Another hotspot for resignation syndrome is the island microstate of Nauru, located in Oceania between the Marshall Islands and the Solomons. Although the entire island nation is only 21 square kilometers, Australia operates an immigration detention center there called the Nauru Regional Processing Center. Try to enter Australia illegally by boat, and you get sent to the island of Nauru to await your fate in a refugee camp. It's been condemned internationally ever since it was opened. Suicides are common, and some refugees are there for years. And the camps on Nauru have also seen an upsurge in resignation syndrome — and due to its remote location and lack of facilities, those children have had to be medically evacuated to islands where there are hospitals that can insert feeding tubes, and mental health professionals who can begin to treat them. The South Pacific is about as far from Sweden as you can get, but it's interesting to note that the children involved are — just like those in Sweden — from immigrant families whose status is in flux.
The studies that are published so far tend to focus on children of asylum seeking families, as that group has so far been the most widely reported on. However there are plenty of other circumstances in which the same stressors could impact a child. One has to wonder whether the many cases of refugee camps, and even concentration camps, throughout the 19th and 20th centuries that saw so many deaths, may have included cases of resignation syndrome. When a child goes into a coma and cannot even drink water, it would take little time to die, and the cause could scarcely be differentiated from the other prevalent causes of death such as typhus that characterized these camps.
Luckily, the prognosis for children experiencing resignation syndrome, and pervasive refusal syndrome, is quite good — if they can get good care fast enough. Treatment obviously includes the feeding plus support for all the other bodily functions, but it's also psychiatric. It's important to make the child (even if unconscious) feel safe and protected. They can be gradually exposed to familiar and positive stimuli. Interestingly, and notably, children often begin to recover the moment residence permits are granted. Why? It's not because the unconscious child necessarily has much understanding of the legal situation — rather, it's because the mood in the household likely changes dramatically. The child's environment goes from one of sadness and hopelessness to one of joy and celebration.
Recovery is never a slam dunk. It's often slow, sometimes taking years for a child to fully return to their previous personality. This underscores just how seriously traumatized a young mind must be to go into a pervasive refusal state and actually fall into a coma lasting months to years.
So, in conclusion, resignation syndrome is real. It is serious and life threatening. It is not a hoax and not something dreamed up by shockumentary filmmakers. Happily, it need not be the end for any of its victims. It can even serve a positive purpose for some: to serve as a lesson to all of us on the importance of treating our fellow humans with dignity and with care. No child should ever have to experience the types of trauma these victims have; and if they do, none should be treated with callous inhumanity, or herded into a refugee camp, by those to whom they come for help. If a child in your system falls into resignation syndrome, take it as a sign that your system is broken. Keep in mind the mood and the tone that surrounds every child, and if you have a chance, try to make it just a little bit better.
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