Pathological Demand Avoidance Research Articles

Commentary: Anxiety and behaviour in and beyond ASD; does the idea of 'PDA' really help? - a commentary on Stuart et al. (2020).

Many children with austism spectrum disorder (ASD) show difficulties containing anxiety, acute distress, behavioural avoidance or control, and sometimes to an extreme degree. Not nearly enough is known about the variety of likely origins of such presentations or their course. Pathological Demand Avoidance (PDA) has been advocated as a discrete developmental syndrome explaining such characteristics when extreme, but its status as an entity is controversial and to date poorly evidenced. Stuart et al. make one of the first studies into factors underlying PDA, by testing Intolerance of uncertainty and anxiety as explanatory paradigms. There is a circularity in their sampling design and common respondent methods, which, alongside the uncertain status of PDA itself, inevitably limits firm conclusions from their study. However, they do develop important concepts and hypotheses that could and should be tested in representative samples across ASD, using comparative, longitudinal and intervention designs. This will contribute to important progress will be made in understanding mental health presentations in ASD and their treatment, as well as resolving debates around PDA itself.

Pathological demand avoidance: What and who are being pathologised and in whose interests?

The term ‘pathological demand avoidance’ was first coined in 1983. In recent years, diagnostic tools have emerged to enable practitioners to identify, name and treat pathological demand avoidance and, at least in the United Kingdom, there is an increasing number of children who attract this label. In addition to what are defined as the core ‘deficits’ of autism, including assumed difficulties in social communication, difficulties in social interaction and restrictive interests, children with pathological demand avoidance are thought to have an extreme anxiety-driven need to control their environment and control the demands and expectations of others. This article will argue that we must exercise extreme caution in accepting the validity of pathological demand avoidance and will suggest that it can be seen as an attempt to psychiatarise autistic children’s resistance, which, in so doing, restricts their agency. First, it will draw on the arguments put forward by some autistic scholars who have claimed that pathological demand avoidance is better understood as rational demand avoidance – an understandable and rational response to the circumstances that one finds oneself in. Second, it will consider the intersection between autism and childhood. When one of the defining characteristics of pathological demand avoidance is an inability to recognise and, presumably, respect social hierarchy, children’s competencies as social actors and active meaning makers of their world can easily become pathologised as defiance. Finally, the article will address the intersections of autism, childhood and gender. Girls are much less likely to be diagnosed as having an autism spectrum condition than boys are, with a ratio traditionally estimated at approximately 1:4. However, pathological demand avoidance diagnoses are fairly evenly spread between boys and girls. It will be argued that it is girls’ resistance to the ordinary and everyday demands of her as a girl and her subsequent rejection or transgression of those expectations that is being pathologised.

Commentary: Demand Avoidance Phenomena, a manifold issue? Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents - a commentary on Stuart et al. (2020).

Demand Avoidance Phenomena (DAP) is a neutral term for Pathological Demand Avoidance, which is sometimes conceptualised as an autism subtype. There is much ongoing controversy around the construct. In this commentary, I attempt to contextualise the recent article, Intolerance of Uncertainty and anxiety (Stuart et al., 2019) within wider discourses. This discussion provides tentative support for monotropism autism theory and the growing body of research indicating that DAP may not be developmentally persistent (a high rate of persons not meeting clinical threshold into adulthood). Going forward I would suggest that Stuart and colleagues' research should be replicated, in order to add to the DAP literature.

Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents.

Pathological demand avoidance (PDA) is a proposed subtype of autism spectrum disorder (ASD), characterised by extreme avoidance of demands. Demand avoidant behaviour has been proposed to be driven by an anxious need to be in control, although has never been explicitly studied. Emerging evidence suggests intolerance of uncertainty (IU) and anxiety may explain the behaviours seen in ASD. We propose these concepts may be useful starting points for furthering understanding of PDA. In Study 1, quantitative methods examined the relationship between PDA, IU and anxiety using data collected in an online survey (N=214). The sample included cases with clinically diagnosed PDA (n=69) and those with no clinical diagnosis but parent-identified features of PDA (n=151). 'Children with a diagnosis of PDA scored significantly higher on the IUS-P (t(212)=2.45, p<.05) compared to those without a diagnosis of PDA. PDA diagnosis did not impact on scores on any other measure.' In Study 2, a selection of Study 1 participants (n=11) were followed up with a telephone interview to gain descriptive data relating to PDA and its association with IU and anxiety. Regression analyses indicate that demand avoidant behaviour can be conceptualised in part as a possible attempt to increase certainty and predictability to alleviate increasing anxiety. Children and young people with PDA employed varying strategies to manage IU depending on the level of demand presented and degree of anxiety generated. These strategies can be represented by different features of the behaviour profile seen in PDA (control behaviour, withdrawal to fantasy, and meltdown). These behavioural features of PDA showed differential relationships with IU and anxiety, although all were predicted by IU, only meltdown demonstrated a mediation effect by anxiety. This study represents one of the first attempts to conceptualise and understand the behavioural features of the PDA profile in children and young people. It builds upon emerging evidence from the ASD literature that IU is a relevant construct for conceptualising demand avoidant behaviour in children who show PDA behaviour. This has potential clinical implications for the assessment and management of PDA in children and young people.

Commentary: PDA - what's in a name? Dimensions of difficulty in children reported to have an ASD and features of extreme/pathological demand avoidance: a commentary on O'Nions etal. (2017).

Pathological demand avoidance (PDA), a term first used by Elizabeth Newson in the 1980s, refers to a collection of behaviours that children will demonstrate to avoid instructions (and tasks) that they perceive as demands. These children are postulated to be averse to anything that is perceived as a demand placed on them. PDA features are commonly encountered in children with autism but PDA is not a subtype of autism nor a separately diagnosed mental, behavioural or developmental disorder in any of the major classification systems (ICD-10 or DSM-5). Such behaviours are not confined to children with autism and debate continues regarding its existence as a distinct phenomenon and if such a phenotype exists whether it is merely a part of autism or a separate condition. We comment on O'Nions and colleagues' study that explores common themes/behavioural traits in children with autism spectrum disorder (ASD) who also fit the phenotypic description of PDA. We explore how the current classification systems capture features of PDA in autism with diagnoses of common comorbidities in ASD (such as disruptive behaviour/conduct disorders, OCD and anxiety), but to many clinicians and parents this seems an inadequate description. What remains to be explored are the trans-diagnostic temperamental and cognitive traits of children with PDA features, such as cognitive rigidity and intolerance of uncertainty. It is important to understand why some children are demand avoidant and identification of these factors (individual and systemic) helps in management much more than classifying them with an additional label. O'Nions etal. have helpfully provided further insight into several underpinning traits/dimensions of children with PDA features; understanding these will help develop effective strategies for parenting demand-avoidant children.

The Measurement of Adult Pathological Demand Avoidance Traits

Pathological (“extreme”) demand avoidance (PDA) involves obsessively avoiding routine demands and extreme emotional variability. It is clinically linked to autism spectrum disorder (ASD). The observer-rated EDA Questionnaire (EDA-Q) for children was adapted as an adult self-report (EDA-QA), and tested in relation to personality and the short-form Autism Screening Questionnaire (ASQ). Study 1 (n = 347) found the EDA-QA reliable, univariate, and correlated with negative affect, antagonism, disinhibition, psychoticism, and ASQ scores. Study 2 (n = 191) found low agreeableness, greater Emotional Instability, and higher scores on the full ASQ predicted EDA-QA. PDA can screened for using this tool, occurs in the general population, and is associated with extremes of personality. Future studies will examine if PDA occurs in other clinical populations.

Pathological Demand Avoidance: symptoms but not a syndrome

Pathological (or extreme) demand avoidance is a term sometimes applied to complex behaviours in children within-or beyond-autism spectrum disorder. The use of pathological demand avoidance as a diagnosis has, at times, led to altered referral practice and misunderstandings between professionals and the families of patients. In our Viewpoint, we reviewed the current literature and conclude that the evidence does not support the validity of pathological demand avoidance as an independent syndrome. Nevertheless, the use of the term highlights an important known range of co-occurring difficulties for many children with autism spectrum disorder that can substantially affect families. We explore how these difficulties can best be understood through understanding of social, sensory, and cognitive sensitivities in autism spectrum disorder, identification of frequently occurring comorbid conditions, and assessment of how these problems interact within the child's social environment. Such understanding should then inform individualised management strategies for children and families, and in social settings, such as education. It is crucial that a shared understanding is achieved between professionals and families in this area.

Le syndrome d’évitement pathologique des demandes : psychopathie autistique ? Syndrome d’Asperger ? Autisme atypique ? Ou trouble envahissant du développement (TED) spécifique ?

The aim of this paper is to inform French clinicians about “pathological demand avoidance” syndrome, also referred to as PDA, described by Elizabeth Newson (1929–2014), professor of developmental psychology at the University of Nottingham in the 1980s. E. Newson discerned a particular behavioral pattern in a subgroup of children who were referred to her for suspicion of autism or Asperger's syndrome without confirmed diagnostic assessment. These children have an inability to tolerate demands imposed upon them and try to resist with strategies of avoidance; being essentially socially manipulative is not compatible with the shared representation of autism. They give an impression of sociability, but they often lack a sense of social identity (e.g. believing themselves to be on a par with or superior to adults), pride or shame. They have mood swings led by need to control their relationship. They appear comfortable in role playing and pretending – often adopting borrowed roles when interacting with others (e.g. relating to peers in the manner of a teacher). In recent years, PDA has attracted increasing clinical attention mainly in the United Kingdom and Northern Europe, but little is known in France. Its validity as well as its place in the nosography are still being debated. E. Newson considered PDA to be a specific pervasive developmental disorder while other clinicians classified it in autism spectrum disorders (ASD). It remains true that PDA is a real clinical problem that imposes a therapeutic challenge: the need for these subjects to control the relationship makes it very difficult to treat. In this article, we illustrate the cardinal signs of this syndrome with a clinical case to facilitate its recognition. We discuss two differential diagnoses: oppositional defiant disorder and ASD. We found that the autistic psychopathy described by Hans Asperger resembles PDA. The interest of E. Newson's work is to highlight the affective and emotional presentation of the symptoms not described in DSM-5 which only emphasizes the deficits of social cognition (deficits in socio-emotional reciprocity, non-verbal communication, restricted interests etc.). Educational approaches effective for PDA differ from “typical” ASD and include novelty, humor and flexibility.

Differentiating between pathological demand avoidance and antisocial personality disorder: a case study

PurposeThe purpose of this paper is to explore the different clinical features of pathological demand avoidance (PDA) and antisocial personality disorder (ASPD) presented in the form of a single case study. The study highlights the potential of misdiagnosis and conceptual confusions to practitioners in forensic settings between the two conditions when working with offenders with personality disorders.Design/methodology/approachA case formulation using the “five Ps” method based on the personal history of an incarcerated male is presented and the clinical similarities and differences between PDA and ASPD are delineated. These differences and similarities are evaluated and applied to offender management including intervention options.FindingsThere are considerable similarities between ASPD and PDA making the two conditions difficult to separate. Both diagnostic criteria identify childhood behavioural problems, aggression, destructiveness, conduct disorder (CD), manipulation and non-compliance as indications of the disorder. For example, the criteria for later adult ASPD are the presence of childhood antisocial behaviour and CD. However, these behaviours may also be suggestive of the attention deficit hyperactivity disorder and non-compliance that are part of PDA. Violent behaviours and aggression can also be perceived in a similar way. Misdiagnosis of PDA as ASPD reduces the efficiency of treatment programmes.Originality/valueThe implications of these findings could prove useful in the successful risk management of offenders with PDA. Given the similar behavioural characteristics between PDA and ASPD, the prevalence of PDA among offenders may be higher than observed. The aim of this study is to raise awareness of potential conceptual complications and clinical confusions between the two conditions with a view to aid offender management through case formulation. A large scale study into offenders with PDA would draw attention to the prevalence of the condition as well as its association with offending behaviour.

Parents’ experiences of professionals’ involvement for children with extreme demand avoidance

Objectives: Pathological demand avoidance (PDA) is characterized by an extreme difficulty in tolerating everyday demands, with a range of ‘socially manipulative’ strategies used to avoid demands. Children also display poor social identity, impulsivity, and obsessive behavior. While research and knowledge about PDA is slowly growing, families continue to encounter considerable difficulties in ensuring their children’s needs are understood and met by health and education services. This study explored what parents of children with extreme demand avoidance valued about professionals’ input.Methods: Parents of 42 children who scored above the cut-off on a standardized measure with validated sensitivity and specificity for PDA responded to questionnaire items asking them to identify professionals’ involvement and helpfulness. They were also asked what had characterized the most helpful professional involvement. Thematic analysis was used to identify the key themes in parents’ responses.Results: Families tended to have high levels of professional involvement. Most professionals were experienced as helpful by the majority of parents. Three main themes were identified as characterizing helpful involvement: enabling access to services and resources, concrete outcomes such assessments and management strategies, and professional-level factors such as skills and qualities.Conclusions: Parents felt positive about practitioners who had listened to their experiences, made efforts to understand the child, and provided or arranged for help. Parents found involvement most helpful when it resulted in comprehensive assessment, appropriate intervention, practical advice and management strategies, and a focus on the well-being of all family members. The overall ratings of helpfulness are encouraging, and the specific feedback about what is most helpful could be of value in shaping services.

Identifying features of 'pathological demand avoidance' using the Diagnostic Interview for Social and Communication Disorders (DISCO).

The term ‘pathological demand avoidance’ (PDA) was coined by Elizabeth Newson to describe children within the autism spectrum who exhibit obsessive resistance to everyday demands and requests (Newson et al., Arch Dis Child 88:595–600, 2003). Clinical accounts describe avoidance strategies including apparently strategic use of distraction or socially shocking behaviour, and obsessive need for control, reflected in domineering behaviour to peers and adults. Educational and management approaches effective for PDA reportedly differ from those for ‘typical’ autism spectrum disorders (ASD), and include novelty, humour and flexibility. Identification of PDA in individuals with ASD may have important implications for management (Eaton and Banting, J Learn Disabil Offending Behav 3:150–157, 2012). Despite increasing interest, no clinician-rated instrument for PDA has been developed. Here, items relevant to PDA were identified from the Diagnostic Interview for Social and Communication Disorder (DISCO) (Wing et al., J Child Psychol Psychiatry 43:307–325, 2002). The most PDA-specific subset of relevant DISCO items was selected, based on low endorsement in general across a sample of 153 individuals assessed for possible ASD using the DISCO. Having selected 11 DISCO PDA items for the measure, a subset of individuals with a high number of these features was identified (N = 27). Consistent with Newson’s descriptions, this high scoring group was characterised by lack of co-operation, use of apparently manipulative behaviour, socially shocking behaviour, difficulties with other people, anxiety and sudden behavioural changes from loving to aggression. All but one case met criteria for an ASD. This study brings the field a step closer to a clinician-rated measure of PDA features and highlights the need for further elucidation of the PDA phenotype.Electronic supplementary materialThe online version of this article (doi:10.1007/s00787-015-0740-2) contains supplementary material, which is available to authorized users.

Mapping the educational experiences of children with pathological demand avoidance

‘Pathological demand avoidance’ (PDA) describes a pattern of difficulties increasingly recognised as forming part of the autistic spectrum. Although clinical reports suggest that children with PDA are likely to experience considerable difficulties in education, their educational experiences have not yet been explored in any systematic way. In the current study, 42 parents of children with PDA completed a questionnaire about their child's educational experiences. Parents' responses indicated that this group of children displays high levels of problem behaviours in school, and receives corresponding high levels of special educational need support and professional involvement. Despite this support, the group had experienced high rates of exclusion and placement breakdown, with only 48% now in mainstream education. Parents reported relatively high satisfaction in their children's educational placements, with success defined by parents in terms of child outcomes, school characteristics and PDA‐specific factors. Findings are discussed with reference to what is known about the educational experiences of children with more typical autism spectrum conditions and in terms of the implications for the inclusion of this group of children with complex needs.

Extreme ("pathological") demand avoidance in autism: a general population study in the Faroe Islands.

Research into Pathological Demand Avoidance (PDA), which has been suggested to be a subgroup within the Autism Spectrum Disorder (ASD), is almost nonexistent in spite of the frequent reference to the condition in clinical practice. The total population of 15 to 24-year-olds in the Faroe Islands was screened for ASD, and 67 individuals were identified who met diagnostic criteria for ASD (corresponding to a general population prevalence of ASD of almost 1 %). Of these 67, 50 had parents who were interviewed using the Diagnostic Interview for Social and Communication Disorders (DISCO-11) which contains 15 "PDA-specific" items. Nine individuals met criteria for "possible clinical diagnosis of PDA", meaning that almost one in five of all with ASD also had indications of having had PDA in childhood, and that 0.18 % of the total population had had the combination of ASD and PDA. However, at the time of assessment, only one of the 9 individuals with possible PDA still met "full criteria". PDA possibly constitutes a considerable minority of all cases with ASD diagnosed in childhood, but criteria for the condition are unlikely to be still met in later adolescence and early adult life.

Pathological Demand Avoidance in a population-based cohort of children with epilepsy: four case studies.

Childhood epilepsy is associated with a range of neurobehavioural comorbidities including Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), motor impairments and emotional problems. These difficulties frequently have a greater impact on quality of life than seizures. Pathological Demand Avoidance (PDA) is a term increasingly in use in the UK and Europe to describe behaviours associated with an extreme resistance to demands and requests and the need to be in control in social interactions. In a population-based group of 85 children with epilepsy, four (5%) were identified as displaying significant symptoms of PDA, were assessed using the Extreme Demand Avoidance Questionnaire (EDA-Q) and are described in detail. As well as significant symptoms of PDA, the four children met criteria for a range of neurobehavioural disorders; all four had cognitive impairment (IQ<85) and met DSM-IV-TR criteria for ADHD. Three, in addition, met criteria for ASD and Developmental Coordination Disorder (DCD) and two for Oppositional Defiant Disorder (ODD). All four experienced their first seizure before 5 years of age. School and parent reports indicated very significant functional impairment and management concerns, particularly with respect to complying with everyday demands. Symptoms of PDA should be considered when evaluating neurobehavioural comorbidity in childhood epilepsy.

Commentary: PDA – public display of affection or pathological demand avoidance? – reflections on O'Nions et al. (2014)

A group of children presents with a rather peculiar type of oppositional behaviours, sometimes now subsumed under the label of 'pathological demand avoidance' syndrome, also increasingly referred to as PDA. Boys and girls with 'this kind of PDA' will do anything to avoid meeting demands of adults and children alike. The behaviours 'used' in maintaining avoidance range from openly oppositional or manipulative to 'extreme shyness', passivity and muteness. These behaviours in terms of expression of affection are rather the opposite of those associated with the commonly used meaning of PDA. However, the avoidant behaviour is quite often 'publicly displayed' and with no feeling for the inappropriateness of the, sometimes even, exhibitionist style of extreme demand avoidance (EDA). The 'disorder' was first heard of in 1980, when Elisabeth Newson presented the first 12 cases of what she believed to be a 'new' and separate syndrome and that she referred to as PDA. Even though PDA has attracted quite a bit of clinical attention in the United Kingdom and other parts of Europe (including Scandinavia), virtually no research has been published in the field so far (Newson, Le Maréchal, & David, ). Experienced clinicians throughout child psychiatry, child neurology and paediatrics testify to its existence and the very major problems encountered when it comes to intervention and treatment. It is therefore a major step forward that O'Nions and co-workers (this issue) have developed a new 'trait measure' for PDA ('the EDA-Q'), a measure that appears to hold considerable promise for research, and eventually for clinical practice.

Pathological demand avoidance: Exploring the behavioural profile

'Pathological Demand Avoidance' is a term increasingly used by practitioners in the United Kingdom. It was coined to describe a profile of obsessive resistance to everyday demands and requests, with a tendency to resort to 'socially manipulative' behaviour, including outrageous or embarrassing acts. Pathological demand avoidance is thought to share aspects of social impairment with autism spectrum disorders, but autism spectrum disorder-appropriate strategies, such as routine and repetition, are described as unhelpful. Outrageous acts and lack of concern for their effects draw parallels with conduct problems and callous-unemotional traits. However, reward-based techniques, effective with conduct problems and callous-unemotional traits, seem not to work in pathological demand avoidance. Despite increasing interest and controversy over the pathological demand avoidance label, there is only one published study to date. We present the first systematic comparison of the behavioural profile of children receiving the term pathological demand avoidance (N = 25) to children with autism spectrum disorders (N = 39) or conduct problems and callous-unemotional traits (N = 28), using parent-report indices of psychopathology. The pathological demand avoidance group displayed comparable levels of autistic traits and peer problems to the autism spectrum disorders group and anti-social traits approaching those seen in the conduct problems and callous-unemotional traits group. Emotional symptoms in pathological demand avoidance exceeded both comparison groups. Findings highlight the extreme behavioural impairment associated with pathological demand avoidance and the need to explore whether behavioural overlap reflects a similar neurocognitive basis to existing groups.

Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA‐Q): preliminary observations on a trait measure for Pathological Demand Avoidance

Pathological Demand Avoidance (PDA) is a term increasingly used in the United Kingdom to describe children who obsessively resist everyday demands, going to extreme lengths to avoid these. There is debate about its relationship with both autism spectrum disorder (ASD) and oppositional defiant disorder (ODD). Unlike ASD, children with PDA are said to use socially manipulative avoidance strategies; and unlike ODD, they resort to extreme, embarrassing or age-inappropriate behaviour. To date, there has been little research into PDA, and it remains contentious. Currently, there are no questionnaire instruments available to aid consistency in description. This study reports the development and preliminary validation of the 'Extreme Demand Avoidance Questionnaire' (EDA-Q), designed to quantify PDA traits based on parent-reported information. The validation study involved data from 326 parents of children aged 5-17 allocated to six groups based on information reported by parents about received diagnoses and behavioural difficulties: (a) typically developing children (N = 102), (b) children with ASD without disruptive behaviour (N = 36), (c) children with ASD with disruptive behaviour (N = 48), (d) children for whom PDA was suspected by parents (irrespective of other diagnoses) (N = 67), (e) children who had, according to parents, been identified as having PDA by a health professional, irrespective of other diagnoses (N = 50), and (6) disruptive behaviour or behavioural problems without suspected/identified ASD or PDA (N = 23). Although the Strengths and Difficulties Questionnaire (SDQ) did not differentiate PDA from those with ASD plus disruptive behaviour; score on the EDA-Q was significantly higher in PDA than all comparison groups. ROC analysis indicated good sensitivity (.80) and specificity (.85). Across all case groups, females scored higher than males on the EDA-Q. Separate cut-off scores were identified for older and younger age-groups. Our findings highlight the potential utility of the EDA-Q to assist the identification of this unusual profile for future research.

Adult diagnosis of pathological demand avoidance – subsequent care planning

PurposeMany patients in residential and secure settings have no formal diagnosis of Autism but may in fact be on the spectrum. This paper seeks to outline the diagnosis and subsequent treatment and intervention planning for a young woman in a low secure hospital.Design/methodology/approachThis paper summarises the literature in relation to the diagnosis of Pathological Demand Avoidance (an atypical presentation of Autism Spectrum Disorder) in children and describes how this diagnosis may present in adults. This search revealed that whilst there was a growing literature around PDA in Children, there was very little literature available about either the clinical presentation or management guidance in adults. A case study design was adopted.FindingsThe paper concludes that the lack of an appropriate diagnosis and inappropriate formulation of the underlying causes of challenging behaviour can lead to patients becoming impossible to manage. Many may benefit from diagnosis and Autism‐specific intervention.Originality/valueThis paper highlights the challenges of adult diagnosis of Autism in highly complex individuals and outlines novel approaches to treatment.

Quirky Citizens: Autism, Gender, and Reimagining Disability

Quirky Citizens: Autism, Gender, and Reimagining Disability