What are Adverse Childhood Experiences?

Introduction

Adverse childhood experiences (ACEs) encompass various forms of physical and emotional abuse, neglect, and household dysfunction experienced in childhood.

ACEs have been linked to premature death as well as to various health conditions, including those of mental disorders. Toxic stress linked to childhood maltreatment is related to a number of neurological changes in the structure of the brain and its function. The Adverse Childhood Experiences Study, published in 1998, was the first large scale study to look at the relationship between ten categories of adversity in childhood and health outcomes in adulthood. Subsequent research is beginning to identify specific biomarkers associated with different kinds of ACEs.

Long Term Effects

According to the Centre for Youth Wellness website:

“Exposure without a positive buffer, such as a nurturing parent or caregiver, can lead to a Toxic Stress Response in children, which can, in turn, lead to health problems like asthma, poor growth and frequent infections, as well as learning difficulties and behavioral issues. In the long term, exposure to ACEs can also lead to serious health conditions like heart disease, stroke, and cancer later in life.”

Adverse childhood experiences can alter the structural development of neural networks and the biochemistry of neuroendocrine systems (i.e. how the brain regulates the hormonal activity in the body) and may have long-term effects on the body, including speeding up the processes of disease and aging and compromising immune systems.

Adverse childhood experiences are equal to various stresses, and a serious adversity is defined as a trauma. The World Health Organisation (WHO) recognises that prolonged stress in childhood can have life-long implications for the development of many diseases. Moreover, ACEs can disrupt early brain development leading to the possible development of several disorders. WHO has designed a screening questionnaire to be used internationally in order to list adverse effects, and relate them to future developments.

The effects of ACEs goes beyond health and risk taking behaviours with studies reporting that people with high ACEs scores showed less trust in government COVID-19 information and polices.

Health Outcomes in Adulthood

Physical Health

ACEs have been linked to numerous negative health and lifestyle issues into adulthood across multiple countries and regions including the United States, the European Union, South Africa, and Asia. Across all these groups researchers have reported seeing the adoption of higher rates of unhealthy lifestyle behaviour including sexual risk taking, smoking, heavy drinking, and obesity. The associations between these lifestyle issues and ACEs shows a dose response relationship with people having four or more ACEs have significantly more of these lifestyle problems. Physical health problems arise in people with ACEs with a similar dose response relationship. Chronic illnesses such as asthma, arthritis, cardiovascular disease, cancer, diabetes, stroke, and migraines show increased symptom severity in step was exposure to ACEs.

Mental Health

Mental health issues have been well know in the face of childhood trauma. Exposure to ACEs is no different with multiple mental health conditions found to have a dose response relationship with symptom severity and prevalence – including depression, attention-deficit hyperactivity disorder (ADHD), anxiety, suicidality, bipolar disorder and schizophrenia.

Special Populations

Additionally, epigenetic transmission may occur due to stress during pregnancy or during interactions between mother and newborns. Maternal stress, depression, and exposure to partner violence have all been shown to have epigenetic effects on infants.

Implementing Practices

Globally knowledge about the prevalence and consequences of adverse childhood experiences has shifted policy makers and mental health practitioners towards increasing, trauma-informed and resilience-building practices. This work has been over 20 years in the making bringing together research are implemented in communities, education settings, public health departments, social services, faith-based organisations and criminal justice.

Communities

As knowledge about the prevalence and consequences of ACEs increases, more communities seek to integrate trauma-informed and resilience-building practices into their agencies and systems. Indigenous populations show similar patterns of mental and physical health challenges as other minority groups. Interventions have been developed in American Indian tribal communities and have demonstrated that social support and cultural involvement can ameliorate the negative physical health effects of ACEs.

There is a paucity of empirical research documenting the experiences of communities who have attempted to implement information about ACEs and trauma-informed practice into widespread public action. The Matlin et al. (2019) article on Pottstown, Pennsylvania’s process demonstrated the challenges associated with community implementation. The Pottstown Trauma-Informed Community Connection (PTICC) initiative evolved from a series of prior collectives that all had similar goals of creating community resilience in order to prevent and treat ACEs. Over the course of the two-year study, over 230 individuals from nearly 100 organisations attended one training offered by the PTICC, raising the number of engaged public sectors from 2 to 14. Participation in training and events was fairly steady and this was largely due to community networking.

However, the PTICC faced several challenges similar to those predicted by the Building Community Resilience model. These barriers included availability of resources over time, competition for power within the group, and the lack of systemic change needed to support long-term goals. Still, Pottstown has built a trauma-informed community foundation and offers lessons to other communities who have similar goals: start with a dedicated small team, identify community connectors, secure long-term financial backing, and conduct data-informed evaluations throughout.

Other community examples exist, such as Tarpon Springs, Florida which became the first trauma-informed community in 2011. Trauma-informed initiatives in Tarpon Springs include trauma-awareness training for the local housing authority, changes in programs for ex-offenders, and new approaches to educating students with learning difficulties.

Education

ACEs exposure is widespread globally, one study from the National Survey of Children’s Health in the United States reported that approximately 68% of children 0-17 years old had experienced one or more ACEs. The impact of ACEs on children can manifest in difficulties focusing, self regulating, trusting others, and can lead to negative cognitive effects. One study found that a child with 4 or more ACEs was 32 times more likely to be labelled with a behavioural or cognitive problem than a child with no ACEs. Another study by the Area Health Education Centre of Washington State University found that students with at least three ACEs are three times as likely to experience academic failure, six times as likely to have behavioural problems, and five times as likely to have attendance problems. The trauma-informed school movement aims to train teachers and staff to help children self-regulate, and to help families that are having problems that result in children’s normal response to trauma. It also seeks to provide behavioural consequences that will not re-traumatize a child.

Trauma-informed education refers to the specific use of knowledge about trauma and its expression to modify support for children to improve their developmental success. The National Child Traumatic Stress Network (NCTSN) describes a trauma-informed school system as a place where school community members work to provide trauma awareness, knowledge and skills to respond to potentially negative outcomes following traumatic stress. The NCTSN published a study that discussed the ARC (attachment, regulation and competency) model, which other researchers have based their subsequent studies of trauma-informed education practices on. Trauma-sensitive or trauma-informed schooling has become increasingly popular in Washington, Massachusetts, and California in the last 10 years.

Social Services

Social service providers – including welfare systems, housing authorities, homeless shelters, and domestic violence centres – are adopting trauma-informed approaches that help to prevent ACEs or minimize their impact. Utilising tools that screen for trauma can help a social service worker direct their clients to interventions that meet their specific needs. Trauma-informed practices can also help social service providers look at how trauma impacts the whole family.

Trauma-informed approaches can improve child welfare services by:

  • Openly discussing trauma; and
  • Addressing parental trauma.

The New Hampshire Division for Children Youth and Families (DCYF) is taking a trauma-informed approach to their foster care services by educating staff about childhood trauma, screening children entering foster care for trauma, using trauma-informed language to mitigate further traumatisation, mentoring birth parents and involving them in collaborative parenting, and training foster parents to be trauma-informed.

Housing authorities are also becoming trauma-informed. Supportive housing can sometimes recreate control and power dynamics associated with clients’ early trauma. This can be reduced through trauma-informed practices, such as training staff to be respectful of clients’ space by scheduling appointments and not letting themselves into clients’ private spaces, and also understanding that an aggressive response may be trauma-related coping strategies. Up to 50% of people with housing insecurity experienced at least four ACEs.

Health Care Services

Screening for or talking about ACEs with parents and children can help to foster healthy physical and psychological development and can help doctors understand the circumstances that children and their parents are facing. By screening for ACEs in children, paediatric doctors and nurses can better understand behavioural problems. Some doctors have questioned whether some behaviours resulting in ADHD diagnoses are in fact reactions to trauma. Children who have experienced four or more ACEs are three times as likely to take ADHD medication when compared with children with less than four ACEs. Screening parents for their ACEs allows doctors to provide the appropriate support to parents who have experienced trauma, helping them to build resilience, foster attachment with their children, and prevent a family cycle of ACEs.

Public Health

Objections to screening for ACEs include the lack of randomised controlled trials that show that such measures can be used to actually improve health outcomes, the scale collapses items and has limited item coverage, there are no standard protocols for how to use the information gathered, and that revisiting negative childhood experiences could be emotionally traumatic. Other obstacles to adoption include that the technique is not taught in medical schools, is not billable, and the nature of the conversation makes some doctors personally uncomfortable. Some public health centres see ACEs as an important way (especially for mothers and children) to target health interventions for individuals during sensitive periods of development early in their life, or even in utero.

Resilience and Resources

Resilience is the ability to adapt or cope in the face of significant adversity and threats such as health problems, stressors experienced in the workplace or home. Resiliency can moderate the relationship of the effects of ACEs and health problem in adulthood. Being able use emotion regulation resources such as cognitive reappraisal and mindfulness people are able to protect themselves from the potential negative effects of stressors, these skills can be taught to people but people living with ACEs score lower on measures of resilience and emotion regulation.

Resilience and access to other resources are protective factors against the effects of exposure to ACEs. Increasing resilience in children can help provide a buffer for those who have been exposed to trauma and have a higher ACE score. People and children who have fostered resiliency have the skills and abilities to embrace behaviours that can foster growth. In childhood, resiliency and attachment security can be fostered from having a caring adult in a child’s life.

Adverse Childhood Experiences Study

The Adverse Childhood Experiences Study (ACE Study) is a research study conducted by the US health maintenance organisation Kaiser Permanente and the Centres for Disease Control and Prevention that was originally published in the American Journal of Preventive Medicine. Participants were recruited to the study between 1995 and 1997 and have since been in long-term follow up for health outcomes. The study has demonstrated an association of ACEs with health and social problems across the lifespan. The study has produced many scientific articles and conference and workshop presentations that examine ACEs.

In the 1980s, the dropout rate of participants at Kaiser Permanente’s obesity clinic in San Diego, California, was about 50%; despite all of the dropouts successfully losing weight under the program. Vincent Felitti, head of Kaiser Permanente’s Department of Preventive Medicine in San Diego, conducted interviews with people who had left the programme, and discovered that a majority of 286 people he interviewed had experienced childhood sexual abuse. The interview findings suggested to Felitti that weight gain might be a coping mechanism for depression, anxiety, and fear.

Felitti and Robert Anda from the Centres for Disease Control and Prevention (CDC) went on to survey childhood trauma experiences of over 17,000 Kaiser Permanente patient volunteers. The 17,337 participants were volunteers from approximately 26,000 consecutive Kaiser Permanente members. About half were female; 74.8% were white; the average age was 57; 75.2% had attended college; all had jobs and good health care, because they were members of the Kaiser health maintenance organisation. Participants were asked about different types of adverse childhood experiences that had been identified in earlier research literature:

  • Physical abuse.
  • Sexual abuse.
  • Emotional abuse.
  • Physical neglect.
  • Emotional neglect.
  • Exposure to domestic violence.
  • Household substance abuse.
  • Household mental illness.
  • Parental separation or divorce.
  • Incarcerated household member.

Findings

According to the United States’ Substance Abuse and Mental Health Services Administration, the ACE study found that:

  • Adverse childhood experiences are common.
    • For example, 28% of study participants reported physical abuse and 21% reported sexual abuse.
    • Many also reported experiencing a divorce or parental separation, or having a parent with a mental and/or substance use disorder.
  • Adverse childhood experiences often occur together.
    • Almost 40% of the original sample reported two or more ACEs and 12.5% experienced four or more.
    • Because ACEs occur in clusters, many subsequent studies have examined the cumulative effects of ACEs rather than the individual effects of each.
  • Adverse childhood experiences have a dose-response relationship with many health problems.
    • As researchers followed participants over time, they discovered that a person’s cumulative ACEs score has a strong, graded relationship to numerous health, social, and behavioural problems throughout their lifespan, including substance use disorders.
    • Furthermore, many problems related to ACEs tend to be comorbid, or co-occurring.
ACE Pyramid
The ACE Pyramid represents the conceptual framework for the ACE Study, which has uncovered how adverse childhood experiences are strongly related to various risk factors for disease throughout the lifespan, according to the CDC.

About two-thirds of individuals reported at least one adverse childhood experience; 87% of individuals who reported one ACE reported at least one additional ACE. The number of ACEs was strongly associated with adulthood high-risk health behaviours such as smoking, alcohol and drug abuse, promiscuity, and severe obesity, and correlated with ill-health including depression, heart disease, cancer, chronic lung disease and shortened lifespan. Compared to an ACE score of zero, having four adverse childhood experiences was associated with a seven-fold (700%) increase in alcoholism, a doubling of risk of being diagnosed with cancer, and a four-fold increase in emphysema; an ACE score above six was associated with a 30-fold (3000%) increase in attempted suicide.

The ACE study’s results suggest that maltreatment and household dysfunction in childhood contribute to health problems decades later. These include chronic diseases – such as heart disease, cancer, stroke, and diabetes – that are the most common causes of death and disability in the United States. These findings are important because they provided a link between the effects of child maltreatment and negative effects later in life which had not been established as clearly before this study.

Subsequent Surveys

The ACE Study has produced more than 50 articles that look at the prevalence and consequences of ACEs. It has been influential in several areas. Subsequent studies have confirmed the high frequency of adverse childhood experiences.

The original study questions have been used to develop a 10-item screening questionnaire. Numerous subsequent surveys have confirmed that adverse childhood experiences are frequent.

The Behavioural Risk Factor Surveillance System (BRFSS) which is ran by the CDC, is an annual survey conducted in waves by groups of individual state and territory health departments.. An expanded ACE survey instrument was included in several US states found each state. Adverse childhood experiences were even more frequent in studies in urban Philadelphia and in a survey of young mothers (mostly younger than 19). Surveys of adverse childhood experiences have been conducted in multiple EU member countries.

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What is the Adverse Childhood Experiences International Questionnaire?

Introduction

Adverse Childhood Experiences International Questionnaire (ACE-IQ) is a World Health Organisation (WHO), 43-item screening questionnaire.

Purpose

It is intended to measure:

  • Types of child abuse or trauma;
  • Neglect;
  • Household dysfunction;
  • Peer violence;
  • Sexual and emotional abuse; and
  • Exposure to community and collective violence.

Who is it For?

ACE-IQ is meant to be administered to people 18 years or older in all countries, and is currently undergoing validation testing.

The Responder (2022): S01E05

Introduction

The Responder is a British police procedural series set in Liverpool, written by former Merseyside Police officer Tony Schumacher and starring Martin Freeman, Adelayo Adedayo, Ian Hart, and MyAnna Buring.

A crisis-stricken, morally compromised first-responder tackles a series of night shifts on the beat in Liverpool, while trying to keep his head above water personally and professionally.

Outline

Chris is forced to work for a major drug dealer to return the drugs stolen by Casey. When Rachel needs his help urgently, Chris must decide where his loyalties truly lie.

The Responder Series

You can find a full index and overview of The Responder here.

Production & Filming Details

  • Release Date: 24 January 2022.
  • Running Time: 60 minutes (per episode).
  • Rating: 15.
  • Country: UK.
  • Language: English.

The Responder (2022): S01E04

Introduction

The Responder is a British police procedural series set in Liverpool, written by former Merseyside Police officer Tony Schumacher and starring Martin Freeman, Adelayo Adedayo, Ian Hart, and MyAnna Buring.

A crisis-stricken, morally compromised first-responder tackles a series of night shifts on the beat in Liverpool, while trying to keep his head above water personally and professionally.

Outline

Chris hits rock bottom. Rachel begins to suspect Mullen may not be all he appears, and Casey teams up with Marco to find a buyer.

The Responder Series

You can find a full index and overview of The Responder here.

Production & Filming Details

  • Release Date: 24 January 2022.
  • Running Time: 60 minutes (per episode).
  • Rating: 15.
  • Country: UK.
  • Language: English.

The Responder (2022): S01E03

Introduction

The Responder is a British police procedural series set in Liverpool, written by former Merseyside Police officer Tony Schumacher and starring Martin Freeman, Adelayo Adedayo, Ian Hart, and MyAnna Buring.

A crisis-stricken, morally compromised first-responder tackles a series of night shifts on the beat in Liverpool, while trying to keep his head above water personally and professionally.

Outline

Chris plans to hand the drugs in, until Carl makes him an offer that he cannot refuse. Rachel strikes a deal with Mullen, but Chris’ behaviour makes her feel conflicted.

The Responder Series

You can find a full index and overview of The Responder here.

Production & Filming Details

  • Release Date: 24 January 2022.
  • Running Time: 60 minutes (per episode).
  • Rating: 15.
  • Country: UK.
  • Language: English.

The Responder (2022): S01E02

Introduction

The Responder is a British police procedural series set in Liverpool, written by former Merseyside Police officer Tony Schumacher and starring Martin Freeman, Adelayo Adedayo, Ian Hart, and MyAnna Buring.

A crisis-stricken, morally compromised first-responder tackles a series of night shifts on the beat in Liverpool, while trying to keep his head above water personally and professionally.

Outline

Chris must juggle handling rookie police officer Rachel while also tracking down Casey, after Chris threatens his family. Casey puts her trust in a friend to hide her from Carl.

The Responder Series

You can find a full index and overview of The Responder here.

Production & Filming Details

  • Release Date: 24 January 2022.
  • Running Time: 60 minutes (per episode).
  • Rating: 15.
  • Country: UK.
  • Language: English.

The Responder (2022): S01E01

Introduction

The Responder is a British police procedural series set in Liverpool, written by former Merseyside Police officer Tony Schumacher and starring Martin Freeman, Adelayo Adedayo, Ian Hart, and MyAnna Buring.

A crisis-stricken, morally compromised first-responder tackles a series of night shifts on the beat in Liverpool, while trying to keep his head above water personally and professionally.

Outline

Police response officer Chris is struggling to keep a grip on his mental health and marriage when he is offered a path to redemption in the form of a young heroin addict.

The Responder Series

You can find a full index and overview of The Responder here.

Production & Filming Details

  • Release Date: 24 January 2022.
  • Running Time: 60 minutes (per episode).
  • Rating: 15.
  • Country: UK.
  • Language: English.

The Responder TV Series Overview (2022)

Introduction

The Responder is a British police procedural series set in Liverpool, written by former Merseyside Police officer Tony Schumacher and starring Martin Freeman, Adelayo Adedayo, Ian Hart, and MyAnna Buring.

A crisis-stricken, morally compromised first-responder tackles a series of night shifts on the beat in Liverpool, while trying to keep his head above water personally and professionally.

Outline

Chris Carson is a police officer, in a fictional constabulary covering Liverpool, who has been demoted from his position as a sergeant and undertakes a series of night shifts in central Liverpool. His work scenes are interspersed with scenes of him at therapy, at home, and with his mother in a nursing home. He is partnered with Rachel Hargreaves, an inexperienced and still idealistic officer who wants to play by the rules. Carl Sweeney is a mid-level drug dealer whose stash of cocaine has been purloined by Casey, a local “baghead”. Chris is trying to help Casey and, in doing so, crosses Carl. Other major characters include the naïve local scally Marco, who finds himself out of his depth.

Carson is a conflicted and compromised man, with somewhat divided loyalties, a desire to do good but violent aggressive streak brought on by childhood trauma exacerbated by his experience in the police. He has been demoted from sergeant and is pursued by the officer responsible as part of a corruption probe, whose motives may not be entirely honest. The effects of the jobs and Chris’ mental state take a toll on his family.

Cast

  • Martin Freeman as Chris Carson.
  • Adelayo Adedayo as Rachel Hargreaves, a probationary police officer.
  • Warren Brown as Raymond Mullen, a demoted officer with an axe to grind.
  • MyAnna Buring as Kate Carson, Chris’ wife.
  • Emily Fairn as Casey, a drug addict.
  • Josh Finan as Marco, Casey’s friend.
  • Philip S. McGuinness as Ian, Carl’s henchman.
  • Mark Womack as Barry, Carl’s henchman.
  • Ian Hart as Carl Sweeney, a drug dealer.
  • Rita Tushingham as June Carson, Chris’ mother.
  • Philip Barantini as Steve, Rachel’s boyfriend.
  • David Bradley as Davey, a local homeless man.
  • Kerrie Hayes as Ellie Mullen, Raymond’s wife and Kate’s best friend.
  • Faye McKeever as Jodie Sweeney, Carl’s wife.
  • Philip Whitchurch as Joe, Casey’s grandfather.
  • Christine Tremarco as Dr. Diane Gallagher, Greg’s sister.
  • Amaka Okafor as Detective Inspector Deborah Barnes, Chris’ boss.
  • James Nelson-Joyce as Greg Gallagher, a drug lord.
  • Elizabeth Berrington as Lynne Renfrew, Chris’ therapist.
  • Victor McGuire as Trevor.
  • Dominic Carter as Sergeant Bernie Wilson.
  • Matthew Cottle as Father Liam Neeson.
  • Dave Hill as Billy.
  • Sylvie Gatrill as Mary.
  • Sonny Walker as Stevo Marsh.
  • James Ledsham as Enno.
  • Connor Dempsey as Kyle.
  • David Ayres as Andy.
  • Kieron Urquhart as Paul.
  • Harry Burke as Liam.

Trivia

  • Tony Schumacher (creator and writer) has said that the character has “a lot to do” with him and the struggles he faced as a police officer, but that the storyline is fictional.
  • In late March 2022 the series was officially renewed for a second season.
  • The series was be shown by Canal plus in France and on SBS TV and SBS On Demand in Australia, as well as various other deals seeing the series being shown around the world.
  • Martin Freeman spent 18 months before he filmed the series talking to himself in a Scouse accent so he could perfect it.
  • Elizabeth Berrington and Martin Freeman previously worked together in The Office Christmas Special (2003).
  • The first season is broadcast in some countries in a six-episode edit.

The Responder Series

  • Series 02 (?2023):
    • Renewed in March 2022.

Production & Filming Details

  • Director(s):
    • Tim Mielants.
    • Fien Troch.
    • Philip Barantini.
  • Producer(s):
    • Laurence Bowen … executive producer (5 episodes, 2022).
    • Toby Bruce … story producer (5 episodes, 2022).
    • Chris Carey … executive producer (5 episodes, 2022).
    • Susan Dunn … line producer (5 episodes, 2022).
    • Nawfal Faizullah … commissioning executive / commissioning executive: BBC (5 episodes, 2022).
    • Rebecca Ferguson … series produced by (5 episodes, 2022).
    • Martin Freeman … executive producer (5 episodes, 2022).
    • Mona Qureshi … executive producer (5 episodes, 2022).
    • Barrington Paul Robinson … co-producer (5 episodes, 2022).
    • Phill Reeves … assistant line producer (3 episodes, 2022).
    • Charlie Greenstein … line producer (1 episode, 2022).
  • Writer(s):
    • Tony Schumacher.
  • Music:
    • Matthew Herbert … (5 episodes, 2022).
  • Cinematography:
    • Johan Heurlin Aidt … (4 episodes, 2022).
    • Matthew Lewis … (1 episode, 2022).
  • Editor(s):
    • Danielle Palmer … (2 episodes, 2022).
    • Alex Fountain … (1 episode, 2022).
    • Donovan Jones … (1 episode, 2022).
  • Production:
    • Dancing Ledge Productions.
    • British Broadcasting Corporation (BBC) (for).
    • Liverpool Film Office (funding).
  • Distributor(s):
    • BBC One (2022) (UK) (TV).
    • British Broadcasting Corporation (BBC) (2022) (UK) (all media).
    • BBC iPlayer (2022) (UK) (video) (VOD).
    • BritBox (UK) (video) (VOD).
    • Fremantle (2022) (World-wide) (all media).
  • Release Date: 24 January 2022.
  • Running Time: 60 minutes (per episode).
  • Rating: 15.
  • Country: UK.
  • Language: English.

What is Resignation Syndrome?

Introduction

Resignation syndrome (also called traumatic withdrawal syndrome or traumatic refusal; Swedish: uppgivenhetssyndrom) is a possibly factitious, dissociative syndrome that induces a catatonic state, first described in Sweden in the 1990s. The condition affects predominately psychologically traumatised children and adolescents in the midst of a strenuous and lengthy migration process.

Refer to Pervasive Refusal Syndrome (PRS).

Young people reportedly develop depressive symptoms, become socially withdrawn, and become motionless and speechless as a reaction to stress and hopelessness. In the worst cases, children reject any food or drink and have to be fed by feeding tube; the condition can persist for years. Recovery ensues within months to years and is claimed to be dependent on the restoration of hope to the family.

More recently, this phenomenon has been called into question, with two children witnessing that they were forced by their parents to act apathetic in order to increase chances of being granted residence permits. As evidenced by medical records, healthcare professionals were aware of this scam, and witnessed parents who actively refused aid for their children but remained silent at the time. Later Sveriges Television, Sweden’s national public television broadcaster, were severely critiqued by investigative journalist Janne Josefsson for failing to uncover the truth. In March 2020, a report citing the Swedish Agency for Medical and Social Evaluation, SBU, said “There are no scientific studies that answer how to diagnose abandonment syndrome, nor what treatment works.”

Signs and Symptoms

Affected individuals (predominantly children and adolescents) first exhibit symptoms of anxiety and depression (in particular apathy, lethargy), then withdraw from others and care for themselves. Eventually their condition might progress to stupor, i.e. they stop walking, eating, talking, and grow incontinent. In this stage patients are seemingly unconscious and tube feeding is life-sustaining. The condition could persist for months or even years. Remission happens after life circumstances improve and ensues with gradual return to what appears to be normal function.

Nosology

Refusal syndrome and pervasive refusal syndrome shares common features and etiologic factors; however, the former is more clearly associated with trauma and adverse life circumstances. Neither is included in the standard psychiatric classification systems.

Pervasive refusal syndrome (also called pervasive arousal withdrawal syndrome) has been conceptualised in a variety of ways, including a form of post-traumatic stress disorder, learned helplessness, ‘lethal mothering’, loss of the internal parent, apathy or the ‘giving-up’ syndrome, depressive devitalisation, primitive ‘freeze’, severe loss of activities of daily living and ‘manipulative’ illness. It was also suggested to be on the ‘refusal-withdrawal-regression spectrum’.

Acknowledging its social importance and relevance, the Swedish National Board of Health and Welfare recognised the novel diagnostic entity resignation syndrome in 2014. While others argue that already-existing diagnostic entities should be used and are sufficient in the majority of cases, i.e. severe major depressive disorder with psychotic symptoms or catatonia, or conversion/dissociation disorder.

Currently, diagnostic criteria are undetermined, pathogenesis is uncertain, and effective treatment is lacking.

Causes

Resignation syndrome appears to be a very specialised response to the trauma of refugee limbo, in which families, many of whom have escaped dangerous circumstances in their home countries, wait to be granted legal permission to stay in their new country, often undergoing numerous refusals and appeals over a period of years.

Experts proposed multifactorial explanatory models involving individual vulnerability, traumatisation, migration, culturally conditioned reaction patterns and parental dysfunction or pathological adaption to a caregiver’s expectations to interplay in pathogenesis. Severe depression or conversion/dissociation disorder has been also suggested (as best diagnostic alternatives).

However, the currently prevailing stress hypothesis fails to account for the regional distribution (see Epidemiology) and contributes little to treatment. An asserted “questioning attitude”, in particular within the health care system, it has been claimed, may constitute a “perpetuating retraumatization possibly explaining the endemic” distribution. Furthermore, Sweden’s experience raises concerns about “contagion”. Researchers argue that culture-bound psychogenesis can accommodate the endemic distribution because children may learn that dissociation is a way to deal with trauma.

A proposed neurobiological model of the disorder suggests that the impact of overwhelming negative expectations are directly causative of the down-regulation of higher order and lower order behavioural systems in particularly vulnerable individuals.

Epidemiology

Depicted as a culture-bound syndrome, it was first observed and described in Sweden among children of asylum seekers from former Soviet and Yugoslav countries. In Sweden, hundreds of migrant children, facing the possibility of deportation, have been diagnosed since the 1990s. For example, 424 cases were reported between 2003 and 2005; and 2.8% of all 6547 asylum applications submitted for children were diagnosed in 2004.

It has also been observed in refugee children transferred from Australia to the Nauru Regional Processing Centre. The Economist wrote in 2018 that Doctors without Borders (MSF) refused to say how many of the children on Nauru may be suffering from traumatic withdrawal syndrome. A report published in August 2018 suggested there were at least 30. The National Justice Project, a legal centre, has brought 35 children from Nauru this year. It estimates that seven were suffering from refusal syndrome, and three were psychotic.

What is Pervasive Refusal Syndrome?

Introduction

Pervasive refusal syndrome (PRS), also known as pervasive arousal withdrawal syndrome (PAWS) is a rare hypothesized paediatric mental disorder. PRS is not included in the standard psychiatric classification systems; that is, PRS is not a recognised mental disorder in the World Health Organisation’s current (ICD-10) and upcoming (ICD-11) International Classification of Diseases and the current Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

Refer to Resignation Syndrome.

Purported Signs and Symptoms

According to some authors, PRS symptoms have common characteristics with other psychiatric disorders, but (according to these authors), current psychiatric classification schemes, such as the DSM cannot account for the full scope of symptoms seen in PRS. Purported symptoms include partial or complete refusal to eat, move, talk, or care for oneself; active and angry resistance to acts of help and support; social withdrawal; and school refusal.

Hypothesized Causes

Trauma might be a causal factor because PRS is repeatedly seen in refugees and witnesses to violence. Viral infections might be a risk factor for PRS.

Mechanism

Some authors hypothesize that learned helplessness is one of the mechanisms involved in PRS. A number of cases have been reported in the context of eating disorders.

Hypothesized Epidemiology

Epidemiological studies are lacking. Pervasive refusal syndrome is reportedly more frequent in girls than boys. The average age of onset is purported to be 7-15.