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Curtis S, Izett E. The experience of mothers of autistic children with a pathological demand avoidance profile: an interpretative phenomenological analysis. DISCOVER MENTAL HEALTH 2025; 5:5. [PMID: 39833592 PMCID: PMC11747059 DOI: 10.1007/s44192-025-00127-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/17/2024] [Accepted: 01/02/2025] [Indexed: 01/22/2025]
Abstract
PURPOSE Emergent research literature has identified emotional and behavioural challenges for autistic children with a pathological demand avoidance profile. However, understanding of their parents' experience is limited. This study aimed to explore the experience of parents of autistic children with a pathological demand avoidance profile. METHODS Semi-structured interviews were completed with ten parents of autistic children with a pathological demand avoidance profile, aged between 5 and 11 years (M = 8.5, SD = 1.90). All participants were mothers, aged 33-50 years (M = 42, SD = 5.35). To explore what meaning participants gave to their lived experience, an interpretative phenomenological analysis was conducted on interview data. RESULTS Four main themes were developed from the interpretative phenomenological analysis; the benefit of a shared understanding about pathological demand avoidance to the parents and their children, the power of pathological demand avoidance and the impact on families, the emotional experience of mothers, and the various ways in which they coped. CONCLUSION The need for further recognition and understanding about pathological demand avoidance is emphasised through recommendations for future research. As is the need for flexible, informed, and appropriate support for demand avoidant children and their families.
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Affiliation(s)
- Sam Curtis
- School of Arts and Humanities, Edith Cowan University, Perth, WA, Australia.
| | - Elizabeth Izett
- School of Arts and Humanities, Edith Cowan University, Perth, WA, Australia
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2
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Gillberg C, Larsson Y, Billstedt E. Extreme or pathological demand avoidance: prioritising research to understand the prevalence and cause. THE LANCET. CHILD & ADOLESCENT HEALTH 2024; 8:471-473. [PMID: 38574748 DOI: 10.1016/s2352-4642(24)00057-9] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/27/2024] [Accepted: 02/28/2024] [Indexed: 04/06/2024]
Affiliation(s)
- Christopher Gillberg
- Gillberg Neuropsychiatry Centre, University of Gothenburg, Gothenburg 411 19, Sweden; Kochi Gillberg Neuropsychiatry Centre, University Medical School, Kochi, Japan; School of Health and Wellbeing, University of Glasgow, Glasgow, UK.
| | - Ylva Larsson
- Child Neuropsychiatry Clinic, Sahlgrenska University Hospital, Gothenburg, Sweden
| | - Eva Billstedt
- Gillberg Neuropsychiatry Centre, University of Gothenburg, Gothenburg 411 19, Sweden
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Suvarna V, Farrell L, Adams D, Emerson LM, Paynter J. Parenting Practices and Externalizing Behaviors in Autistic Children: A Systematic Literature Review. Clin Child Fam Psychol Rev 2024; 27:235-256. [PMID: 38407761 PMCID: PMC10920481 DOI: 10.1007/s10567-024-00467-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/28/2024] [Indexed: 02/27/2024]
Abstract
There is limited recent research on the association between parenting practices and externalizing behaviors in autistic children. To address this gap, the current systematic review examined the associations between parenting practices and externalizing behaviors in autistic children, along with the mediating and moderating effects of parent and child variables (PROSPERO registration number CRD42022268667). Study inclusion criteria were (1) Peer-reviewed journals, (2) Participants included parents of autistic children and their children, (3) Quantitative measures of both parenting practices or behaviors/style and child externalizing behaviors, (4) Cross-sectional or longitudinal studies only, and (5) Studies published in English. Study exclusion criteria were: (1) Qualitative studies, (2) Published in a language other than English, (3) Participants included non-human participants, (4) Participants that did not include parents and their autistic children as participants or did not report this group separately, (5) Systematic review and meta-analyses, and (6) No quantitative measures of parenting practices and/or child externalizing behaviors. Quality appraisal and risk of bias were conducted using the McMaster Tool and results were synthesized in Covidence and Excel. Thirty studies were included in the review. Results demonstrated that mindful parenting was associated with fewer or lower levels of externalizing behaviors; positive parenting practices had non-significant associations with externalizing behaviors; specific parenting practices had differing associations with externalizing behaviors; and negative parenting practices were associated with higher levels of externalizing behaviors. We are unable to draw causal relationships due to focus on cross-sectional and longitudinal articles only. The potential for future research to target specific parent practices to support children's externalizing behaviors is discussed.
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Affiliation(s)
- Vedanta Suvarna
- School of Applied Psychology, Griffith University, Gold Coast, QLD, Australia.
| | - Lara Farrell
- School of Applied Psychology, Griffith University, Gold Coast, QLD, Australia
| | - Dawn Adams
- Autism Centre of Excellence, School of Education and Professional Studies, Griffith University, Mt Gravatt, QLD, Australia
| | - Lisa-Marie Emerson
- School of Health Sciences, University of Canterbury, Christchurch, New Zealand
| | - Jessica Paynter
- School of Applied Psychology, Griffith University, Gold Coast, QLD, Australia
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Connolly SE, Constable HL, Mullally SL. School distress and the school attendance crisis: a story dominated by neurodivergence and unmet need. Front Psychiatry 2023; 14:1237052. [PMID: 37810599 PMCID: PMC10556686 DOI: 10.3389/fpsyt.2023.1237052] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/08/2023] [Accepted: 08/24/2023] [Indexed: 10/10/2023] Open
Abstract
Background The Covid-19 pandemic has brought into sharp focus a school attendance crisis in many countries, although this likely pre-dates the pandemic. Children and young people (CYP) struggling to attend school often display extreme emotional distress before/during/after school. We term this School Distress. Here we sought to elucidate the characteristics of the CYP struggling to attend school in the United Kingdom. Methods Using a case-control, concurrent embedded mixed-method research design, 947 parents of CYP with experience of School Distress completed a bespoke online questionnaire (February/March 2022), alongside an age-matched control group (n = 149) and a smaller group of parents who electively home-educate (n = 25). Results In 94.3% of cases, school attendance problems were underpinned by significant emotional distress, with often harrowing accounts of this distress provided by parents. While the mean age of the CYP in this sample was 11.6 years (StDev 3.1 years), their School Distress was evident to parents from a much younger age (7.9 years). Notably, 92.1% of CYP currently experiencing School Distress were described as neurodivergent (ND) and 83.4% as autistic. The Odds Ratio of autistic CYP experiencing School Distress was 46.61 [95% CI (24.67, 88.07)]. Autistic CYP displayed School Distress at a significantly earlier age, and it was significantly more enduring. Multi-modal sensory processing difficulties and ADHD (among other neurodivergent conditions) were also commonly associated with School Distress; with School Distress CYP having an average of 3.62 NDs (StDev 2.68). In addition, clinically significant anxiety symptomology (92.5%) and elevated demand avoidance were also pervasive. Mental health difficulties in the absence of a neurodivergent profile were, however, relatively rare (6.17%). Concerningly, despite the striking levels of emotional distress and disability reported by parents, parents also reported a dearth of meaningful support for their CYP at school. Conclusion While not a story of exclusivity relating solely to autism, School Distress is a story dominated by complex neurodivergence and a seemingly systemic failure to meet the needs of these CYP. Given the disproportionate number of disabled CYP impacted, we ask whether the United Kingdom is upholding its responsibility to ensure the "right to an education" for all CYP (Human Rights Act 1998).
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Affiliation(s)
- Sophie E. Connolly
- Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, United Kingdom
- School of Psychology, Newcastle University, Newcastle upon Tyne, United Kingdom
| | - Hannah L. Constable
- Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, United Kingdom
| | - Sinéad L. Mullally
- Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, United Kingdom
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5
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Kamp-Becker I, Schu U, Stroth S. [Pathological Demand Avoidance: Current State of Research and Critical Discussion]. ZEITSCHRIFT FUR KINDER- UND JUGENDPSYCHIATRIE UND PSYCHOTHERAPIE 2023. [PMID: 36892327 DOI: 10.1024/1422-4917/a000927] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 03/10/2023]
Abstract
Pathological Demand Avoidance: Current State of Research and Critical Discussion Abstract: Pathological demand avoidance (PDA) describes children who obsessively avoid any demand to a clinically relevant extent and is presently the subject of controversial discussion. Their behavior may be interpreted as an attempt to reduce anxiety by establishing security and predictability through rigid control of the environment as well as the demands and expectations of others. The symptoms are described in the context of autism spectrum disorder. This article reviews the current state of research and discusses the questionable validity of pathological demand avoidance as an independent diagnostic entity. It also addresses the impact of the behavior profile on development and treatment. This paper concludes that PDA is not a diagnostic entity nor a subtype of autism; rather, it is a behavior profile that can be associated with adverse illness progression and unfavorable outcomes. PDA is one feature in a complex model. We must consider not only the patient's characteristics but also those of the caregiver and their psychopathology. The reactions of the interaction partners as well as the treatment decisions play a key role play for the affected individuals. Substantial research is needed concerning the occurrence of the behavior profile PDA in diverse disorders, treatment options, and treatment responses.
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Affiliation(s)
- Inge Kamp-Becker
- Klinik für Kinder- und Jugendpsychiatrie, Psychosomatik und Psychotherapie, Universitätsklinikum Marburg und Philipps-Universität Marburg, Deutschland
| | - Ulrich Schu
- Klinik für Psychiatrie und Psychotherapie, Universitätsklinikum Marburg und Philipps-Universität Marburg, Deutschland
| | - Sanna Stroth
- Klinik für Kinder- und Jugendpsychiatrie, Psychosomatik und Psychotherapie, Universitätsklinikum Marburg und Philipps-Universität Marburg, Deutschland
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Schneider S, Clément C, Goltzene MA, Meyer N, Gras-Vincendon A, Schröder CM, Coutelle R. Determinants of the evolutions of behaviours, school adjustment and quality of life in autistic children in an adapted school setting: an exploratory study with the International Classification of Functioning, disability and health (ICF). BMC Psychiatry 2022; 22:323. [PMID: 35524241 PMCID: PMC9074195 DOI: 10.1186/s12888-022-03924-0] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/03/2021] [Accepted: 04/07/2022] [Indexed: 11/22/2022] Open
Abstract
BACKGROUND Previous studies about Quality of Life (QoL) in autistic children (ASD) have put forward the negative impact of factors such as Autism Spectrum Disorder (ASD) severity, psychiatric comorbidities and adaptive behaviour impairment. However, little is known about the relation of these factors to school adjustment, measured with the International Classification of Functions disability and health (ICF) framework (World Health Organization, 2001), and QoL evolutions. Thus, this study aimed at investigating the determinants of behaviours, school adjustment and QoL changes in 32 children in an ASD inclusion program over one academic year. METHODS Using Bayesian methods, we studied the impact of ASD severity, psychiatric comorbidities, adaptive behaviour level and a diagnosis of Pathological Demand Avoidance (PDA) on evolutions of behaviour, school adjustment (measured with the ICF) and QoL. RESULTS As predicted, adequate adaptive behaviour levels were associated with better progress of behaviours and school adjustment whereas psychiatric comorbidities were related to worse outcome of school adjustment. Contrary to our hypotheses, severe ASD was associated to better evolution of adjustment at school. PDA was not discriminant. We did not find any association between the studied factors and the evolution of QoL over the academic year. CONCLUSION Our results show that the assessment of adaptive behaviour levels, psychiatric comorbidities and ASD severity level may be useful predictors to discriminate of school adjustment evolution (assessed by teachers within the ICF model) over a one-year period in autistic children. The assessment of this time course of school adjustment was sensitive to change and adapted to differentiate evolutions in an inclusive education framework. The investigation of quality of school life of autistic children as well as its determinants may therefore be relevant to improving academic adaptation. However, further research in larger groups, over longer periods and in different personalized school settings for autistic children is needed.
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Affiliation(s)
- Stéphanie Schneider
- grid.412220.70000 0001 2177 138XService de Psychiatrie de l’Enfant et de l’Adolescent, FHU NEUROGENΨCS, Fédération de Médecine Translationnelle de Strasbourg (FMTS), University Hospital and Medical School of Strasbourg, INSERM 1114, GIS Autisme et TND, Centre d’Excellence STRAS&ND, Strasbourg, France ,GIS Autisme et TND, Centre d’Excellence STRAS&ND, Strasbourg, France
| | - Céline Clément
- GIS Autisme et TND, Centre d’Excellence STRAS&ND, Strasbourg, France ,grid.11843.3f0000 0001 2157 9291LISEC, Laboratoire Interuniversitaire en Sciences de l’Education et de la Communication, UR 2310, Université de Strasbourg, Strasbourg, France
| | - Marc-André Goltzene
- grid.412220.70000 0001 2177 138XHôpitaux Universitaires de Strasbourg, Service de pathologie professionnelle et environnementale, 1 place de l’hôpital, 67000 Strasbourg, France
| | - Nicolas Meyer
- grid.412220.70000 0001 2177 138XDepartment of Public Health, University Hospitals of Strasbourg, Strasbourg, France ,grid.11843.3f0000 0001 2157 9291Faculty of Medicine, University of Strasbourg, Strasbourg, France
| | - Agnès Gras-Vincendon
- grid.412220.70000 0001 2177 138XService de Psychiatrie de l’Enfant et de l’Adolescent, FHU NEUROGENΨCS, Fédération de Médecine Translationnelle de Strasbourg (FMTS), University Hospital and Medical School of Strasbourg, INSERM 1114, GIS Autisme et TND, Centre d’Excellence STRAS&ND, Strasbourg, France ,GIS Autisme et TND, Centre d’Excellence STRAS&ND, Strasbourg, France
| | - Carmen M. Schröder
- grid.412220.70000 0001 2177 138XService de Psychiatrie de l’Enfant et de l’Adolescent, FHU NEUROGENΨCS, Fédération de Médecine Translationnelle de Strasbourg (FMTS), University Hospital and Medical School of Strasbourg, INSERM 1114, GIS Autisme et TND, Centre d’Excellence STRAS&ND, Strasbourg, France ,GIS Autisme et TND, Centre d’Excellence STRAS&ND, Strasbourg, France ,grid.462184.d0000 0004 0367 4422CNRS UPR 3212, Equipe 9, “Lumière, Rythmes Circadiens, Homéostasie du Sommeil et Neuropsychiatrie”, Institut des Neurosciences Cellulaires et Intégratives (INCI), Strasbourg, France
| | - Romain Coutelle
- Service de Psychiatrie de l'Enfant et de l'Adolescent, FHU NEUROGENΨCS, Fédération de Médecine Translationnelle de Strasbourg (FMTS), University Hospital and Medical School of Strasbourg, INSERM 1114, GIS Autisme et TND, Centre d'Excellence STRAS&ND, Strasbourg, France. .,GIS Autisme et TND, Centre d'Excellence STRAS&ND, Strasbourg, France.
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7
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Understanding the Contributions of Trait Autism and Anxiety to Extreme Demand Avoidance in the Adult General Population. J Autism Dev Disord 2022:10.1007/s10803-022-05469-3. [PMID: 35437676 PMCID: PMC9015283 DOI: 10.1007/s10803-022-05469-3] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/28/2022] [Indexed: 11/01/2022]
Abstract
Autism and anxiety are thought to be related to extreme demand avoidance (EDA), which is characterised by intense avoidance of everyday demands. However, the relative importance of autism and anxiety to EDA has yet to be investigated, and little is known about EDA in adulthood. We conducted two online survey studies (Ns = 267 and 549) with adults in the general population to establish the relative importance of autistic traits and anxiety as predictors of demand avoidance, using dominance analysis. Both autistic traits and anxiety were unique and equally important predictors of demand avoidance. These findings suggest EDA is linked to autism and are consistent with the theory that demand avoidance behaviours are potentially anxiety-driven in adults.
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Kildahl AN, Helverschou SB, Rysstad AL, Wigaard E, Hellerud JM, Ludvigsen LB, Howlin P. Pathological demand avoidance in children and adolescents: A systematic review. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2021; 25:2162-2176. [PMID: 34320869 DOI: 10.1177/13623613211034382] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
LAY ABSTRACT Requests for diagnoses of pathological demand avoidance have increased over recent years, but pathological demand avoidance remains a controversial issue. The concept of pathological demand avoidance has been criticised for undermining the self-advocacy of autistic people and neglecting the potential role of anxiety as a possible underlying or contributing cause. The current study was undertaken to summarise and review the methodological quality and findings from current research into pathological demand avoidance in children and adolescents. Further aims were to describe how pathological demand avoidance has been identified and to explore the relationships with autism and other developmental and psychiatric disorders. After a comprehensive search, 13 relevant studies using a wide range of methods were identified and systematic quality assessments were undertaken. All the studies had based the identification of pathological demand avoidance, directly or indirectly, on descriptions from the original study by Newson and colleagues. However, the methods used to develop these criteria were not clearly described. Most studies relied exclusively on parental report for data, and there was a general failure to take account of alternative explanations for the behaviours under study. No studies explored the views of individuals with pathological demand avoidance themselves. Problems concerning definition and measurement in the reviewed studies currently limit any conclusions regarding the uniformity or stability of the behaviours described, or the characteristics of individuals displaying them. Relationships between pathological demand avoidance and other emotional and behavioural difficulties should be explored in future research, as should the perspectives of individuals with pathological demand avoidance themselves.
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9
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Underlying Thinking Pattern Profiles Predict Parent-Reported Distress Responses in Autism Spectrum Disorder. J Autism Dev Disord 2021; 52:2112-2131. [PMID: 34052971 DOI: 10.1007/s10803-021-05092-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/14/2021] [Indexed: 10/20/2022]
Abstract
Appreciating autistic neurodiversity is important when supporting autistic people who experience distress. Specifically, use of a profiling model can reveal less visible autistic differences, including strengths and abilities. Binary logistic regressions showed that the likelihood of extreme distress responses could be interpreted based on parent-reported autistic thinking pattern profiles for 140 young people. Perspective-taking (specifically empathy), extreme demand avoidance, and over-sensory sensitivity each contributed to the combined regression models. From the clinical perspective of autism as a multi-dimensional and inter-connected construct, there may be implications for planning support and building positive self-understanding. Individually tailored adjustments and support strategies may be identified more easily after delineating variables found across four core aspects: sensory coherence, flexible thinking, perspective-taking, and regulation.
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10
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Egan V, Bull E, Trundle G. Individual differences, ADHD, adult pathological demand avoidance, and delinquency. RESEARCH IN DEVELOPMENTAL DISABILITIES 2020; 105:103733. [PMID: 32682221 DOI: 10.1016/j.ridd.2020.103733] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/08/2019] [Revised: 04/01/2020] [Accepted: 07/02/2020] [Indexed: 06/11/2023]
Abstract
BACKGROUND Pathological Demand Avoidance (PDA) is a developmental disorder involving challenging behaviour clinically linked to Autism Spectrum Disorder (ASD). Many of the problematic features of PDA are often seen in persons with attention deficit hyperactivity disorder and impulsivity. ADHD and impulsivity are also common in the backgrounds of offenders. AIMS Method and procedure: We examined if self-reported ASD, ADHD, impulsivity, and general personality traits such as low conscientiousness and low emotional stability predicted self-reported PDA scores, and which constructs contributed to the prediction of delinquency, recruiting 132 participants (mean age 34.6 years, SD = 10.9, range 18-68), of whom 126 cases had complete data. OUTCOMES AND RESULTS Many of these constructs, but particularly ADHD (r = 0.71, p < 0.001) were significant correlates of PDA, the correlation between ASD and PDA was small, and did not predict PDA. Multiple regression indicated that a combination of higher attention deficit, antagonism, and lower emotional stability predicted 65 % of an individual's PDA score, but that their PDA score did not contribute to the prediction of delinquency. CONCLUSIONS AND IMPLICATIONS This research indicates that, for community adult populations, self-reported individual differences in ADHD, emotional instability, and antagonism appear to better predict PDA than ASD. The association PDA has with delinquency may reflect these constructs, which are also correlates of offending.
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Affiliation(s)
- Vincent Egan
- Centre for Forensic and Family Psychology, University of Nottingham, Yang Fujia Building, Jubilee Campus, Wollaton Road, Nottingham, NG8 1BB, UK.
| | - Elinor Bull
- Centre for Forensic and Family Psychology, University of Nottingham, Yang Fujia Building, Jubilee Campus, Wollaton Road, Nottingham, NG8 1BB, UK.
| | - Grace Trundle
- Centre for Forensic and Family Psychology, University of Nottingham, Yang Fujia Building, Jubilee Campus, Wollaton Road, Nottingham, NG8 1BB, UK.
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Grahame V, Stuart L, Honey E, Freeston M. Response: Demand Avoidance Phenomena: a manifold issue? Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents - a response to Woods (2020). Child Adolesc Ment Health 2020; 25:71-73. [PMID: 32307840 DOI: 10.1111/camh.12376] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 02/03/2020] [Indexed: 11/28/2022]
Abstract
This paper is in response to the commentary written by Richard Woods in which he attempts to provide support for his Monotropism autism theory and the research indicating that Demand Avoidance Phenomena may not be developmentally persistent (Woods, 2019). We acknowledge the continuing controversy around the proposed construct of PDA and the clinical dilemma faced by professionals, within the United Kingdom, following increased demand from families seeking assessment and support. We appreciate that research on this topic is scarce and understanding of PDA behaviours remains limited and that methodological improvements are required. However, it is important to remember that anxiety, which often has an onset in middle childhood and adolescence, is a major risk factor for mental health difficulties. Therefore, treatments targeting underlying and potentially modifiable mechanisms rather than anxiety symptoms may be more likely to be effective.
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Affiliation(s)
- Victoria Grahame
- Complex Neurodevelopmental Disorder Service, Tyne and Wear NHS Foundation Trust, Northumberland, Newcastle upon Tyne, UK
| | - Lisa Stuart
- South Tyneside Community Team, Tyne and Wear NHS Foundation Trust, Northumberland, Newcastle upon Tyne, UK
| | - Emma Honey
- Complex Neurodevelopmental Disorder Service, Tyne and Wear NHS Foundation Trust, Northumberland, Newcastle upon Tyne, UK
| | - Mark Freeston
- School of Psychology, Newcastle University, Newcastle upon Tyne, UK
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Stuart L, Grahame V, Honey E, Freeston M. Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child Adolesc Ment Health 2020; 25:59-67. [PMID: 32307839 DOI: 10.1111/camh.12336] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 04/03/2019] [Indexed: 12/28/2022]
Abstract
BACKGROUND 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. METHODS 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. RESULTS 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. CONCLUSIONS 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.
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Affiliation(s)
- Lisa Stuart
- South Tyneside Community Team, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, UK
| | - Victoria Grahame
- Complex Neurodevelopmental Disorder Service, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, UK
| | - Emma Honey
- Complex Neurodevelopmental Disorder Service, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, UK
| | - Mark Freeston
- School of Psychology, Newcastle University, Newcastle, UK
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13
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Woods R. 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). Child Adolesc Ment Health 2020; 25:68-70. [PMID: 32307844 DOI: 10.1111/camh.12368] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 12/10/2019] [Indexed: 11/29/2022]
Abstract
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.
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Parenting Strategies Used by Parents of Children with ASD: Differential Links with Child Problem Behaviour. J Autism Dev Disord 2019; 50:386-401. [PMID: 31676915 PMCID: PMC6994498 DOI: 10.1007/s10803-019-04219-2] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/21/2022]
Abstract
Here, we explored the structure of the 'Parenting Strategies Questionnaire', a new scale designed to measure parenting strategies for problem behaviour in ASD. We then examined links between child behaviour and parenting in a sample of 222 predominantly-UK parents of ASD children exhibiting behaviour found difficult or challenging. Analysis revealed three parenting subscales: Accommodation, Reinforcement Approaches and Reducing Uncertainty. Both Accommodation and Reducing Uncertainty were linked to child problem behaviour. Child factors explained up to 29% of the variance in Accommodation, with Socially Inflexible Non-compliance the strongest predictor, and up to 24% of the variance in Reducing Uncertainty, with Intolerance of Uncertainty the strongest predictor. Child factors were not related to Reinforcement Approaches. Longitudinal studies investigating these relationships are needed.
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Abstract
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.
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Affiliation(s)
- Vincent Egan
- Centre for Forensic and Family Psychology, University of Nottingham, Yang Fujia Building, Jubilee Campus, Wollaton Road, Nottingham, NG8 1BB UK
| | - Omer Linenberg
- Centre for Forensic and Family Psychology, University of Nottingham, Yang Fujia Building, Jubilee Campus, Wollaton Road, Nottingham, NG8 1BB UK
| | - Elizabeth O’Nions
- Faculty of Psychology and Educational Sciences, Parenting and Special Education Research Unit, KU Leuven, Leuven, Belgium
- Leuven Autism Research (LAuRes), KU Leuven, Leuven, Belgium
- MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK
- Division of Psychology and Language Sciences, Developmental Risk & Resilience Unit, Clinical, Educational, and Health Psychology Research Department, University College London, London, UK
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O'Nions E, Viding E, Floyd C, Quinlan E, Pidgeon C, Gould J, Happé F. Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme/'pathological' demand avoidance. Child Adolesc Ment Health 2018; 23:220-227. [PMID: 32677301 DOI: 10.1111/camh.12242] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 07/28/2017] [Indexed: 11/28/2022]
Abstract
BACKGROUND A subset of individuals with autism spectrum disorder (ASD) resemble descriptions of extreme/'pathological' demand avoidance, displaying obsessive avoidance of everyday demands and requests, strategic or 'socially manipulative' behaviour and sudden changes in mood. Investigating challenging presentations using dimensional description may prove preferable to identifying subgroups. However, there remains an imperative to explore which behavioural traits appear most problematic to inform quantitative investigation. This study provides an in-depth exploration of parent perspectives on maladaptive behaviour in children reported to have an autism spectrum diagnosis and features of extreme/'pathological' demand avoidance. METHOD Parents completed a tailored semistructured interview about their child's behaviour, focusing on difficulties relevant to descriptions of extreme/'pathological' demand avoidance. The 26 interviews rated as scoring above threshold for 'substantial' features of extreme/'pathological' demand avoidance on relevant indicators were analysed qualitatively using a general inductive approach. RESULTS New themes that emerged from these data included attempts by the child to control situations and others' activities. Avoidance behaviours in this sample could be described as 'strategic' rather than 'manipulative'. A range of factors, including a negative emotional response to demands, but also phobias, novelty, and uncertainty, were perceived to play a role in triggering extreme behaviour. CONCLUSIONS These descriptions highlight the importance of systematically measuring noncompliance, attempts to control situations and others' activities, and extreme mood variability in individuals with ASD. These dimensions represent important targets for intervention, given their considerable impact on daily life.
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Affiliation(s)
- Elizabeth O'Nions
- Parenting & Special Education Research Unit, Faculty of Psychology and Educational Sciences, University of Leuven (KU Leuven), Leuven, Belgium.,Leuven Autism Research (LAuRes), University of Leuven (KU Leuven), Leuven, Belgium.,Developmental Risk & Resilience Unit, Clinical, Educational, and Health Psychology Research Department, Division of Psychology and Language Sciences, University College London, London, UK.,MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Essi Viding
- Developmental Risk & Resilience Unit, Clinical, Educational, and Health Psychology Research Department, Division of Psychology and Language Sciences, University College London, London, UK
| | - Caroline Floyd
- Central North West London NHS, Pembroke Centre, London, UK
| | - Emma Quinlan
- MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Connie Pidgeon
- MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | - Judith Gould
- The NAS Lorna Wing Centre for Autism, Bromley, Kent, UK
| | - Francesca Happé
- MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
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Green J, Absoud M, Grahame V, Malik O, Simonoff E, Le Couteur A, Baird G. Pathological Demand Avoidance: symptoms but not a syndrome. THE LANCET. CHILD & ADOLESCENT HEALTH 2018; 2:455-464. [PMID: 30169286 DOI: 10.1016/s2352-4642(18)30044-0] [Citation(s) in RCA: 21] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/04/2017] [Revised: 01/19/2018] [Accepted: 01/29/2018] [Indexed: 02/02/2023]
Abstract
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.
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Affiliation(s)
- Jonathan Green
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK; Manchester University NHS Foundation Trust, Greater Manchester Mental Health NHS Foundation Trust, and Manchester Academic Health Sciences Centre, Manchester, UK.
| | - Michael Absoud
- Department of Children's Neurosciences, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK; King's Health Partners Academic Health Science Centre, London, UK; Department of Women and Children's Health, School of Life Course Sciences, Faculty of Life Sciences and Medicine, King's College London, London, UK
| | | | - Osman Malik
- Department of Children's Neurosciences, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK; King's Health Partners Academic Health Science Centre, London, UK
| | - Emily Simonoff
- Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, UK; South London and Maudsley NHS Foundation Trust, London, UK
| | - Ann Le Couteur
- Newcastle University, Newcastle upon Tyne, UK; Northumberland Tyne and Wear NHS Trust, Newcastle upon Tyne, UK
| | - Gillian Baird
- Department of Children's Neurosciences, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK; King's Health Partners Academic Health Science Centre, London, UK
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18
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Ogundele MO. Behavioural and emotional disorders in childhood: A brief overview for paediatricians. World J Clin Pediatr 2018; 7:9-26. [PMID: 29456928 PMCID: PMC5803568 DOI: 10.5409/wjcp.v7.i1.9] [Citation(s) in RCA: 160] [Impact Index Per Article: 22.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/27/2017] [Revised: 11/30/2017] [Accepted: 12/05/2017] [Indexed: 02/06/2023] Open
Abstract
Mental health problems in children and adolescents include several types of emotional and behavioural disorders, including disruptive, depression, anxiety and pervasive developmental (autism) disorders, characterized as either internalizing or externalizing problems. Disruptive behavioural problems such as temper tantrums, attention deficit hyperactivity disorder, oppositional, defiant or conduct disorders are the commonest behavioural problems in preschool and school age children. The routine Paediatric clinic or Family Medicine/General Practitioner surgery presents with several desirable characteristics that make them ideal for providing effective mental health services to children and adolescents. DSM-5 and ICD-10 are the universally accepted standard criteria for the classification of mental and behaviour disorders in childhood and adults. The age and gender prevalence estimation of various childhood behavioural disorders are variable and difficult to compare worldwide. A review of relevant published literature was conducted, including published meta-analyses and national guidelines. We searched for articles indexed by Ovid, PubMed, PubMed Medical Central, CINAHL, EMBASE, Database of Abstracts and Reviews, and the Cochrane Database of Systematic reviews and other online sources. The searches were conducted using a combination of search expressions including "childhood", "behaviour", "disorders" or "problems". Childhood behaviour and emotional problems with their related disorders have significant negative impacts on the individual, the family and the society. They are commonly associated with poor academic, occupational, and psychosocial functioning. It is important for all healthcare professionals, especially the Paediatricians to be aware of the range of presentation, prevention and management of the common mental health problems in children and adolescents.
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Affiliation(s)
- Michael O Ogundele
- Department of Community Paediatrics, NHS Fife, Glenwood Health Centre, Glenrothes KY6 1HK, United Kingdom
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19
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Gore Langton E, Frederickson N. Parents' experiences of professionals' involvement for children with extreme demand avoidance. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2016; 64:16-24. [PMID: 34141287 PMCID: PMC8115513 DOI: 10.1080/20473869.2016.1204743] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/12/2023]
Abstract
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.
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Affiliation(s)
- Emma Gore Langton
- Educational Psychology Group, Department of Psychology, University College London, 26 Bedford Way, LondonWC1H 0AP, UK
| | - Norah Frederickson
- Educational Psychology Group, Department of Psychology, University College London, 26 Bedford Way, LondonWC1H 0AP, UK
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20
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Sleep Disturbances and Associated Factors in Chinese Children with Autism Spectrum Disorder: A Retrospective and Cross-Sectional Study. Child Psychiatry Hum Dev 2016; 47:248-58. [PMID: 26072264 DOI: 10.1007/s10578-015-0561-z] [Citation(s) in RCA: 34] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/23/2022]
Abstract
Sleep disturbances in children with autism spectrum disorder (ASD) exist worldwide, but little is known about this issue in non-Western cultures. This study aimed to characterize sleep disturbances in Chinese children with ASD and to examine associated sociodemographic factors and emotional/behavioral problems. Parents of 60 Chinese children with ASD (aged 6-17 years) from Shenzhen, China completed the Children's Sleep Habits Questionnaire (CSHQ), and the Strengths and Difficulties Questionnaire (SDQ). Sleep disturbances were severe and common, with rates of 70.0% for overall disturbances and 15.0% (daytime sleepiness) to 40.0% (sleep duration) for specific domains. The severity and rate of sleep disturbances were higher compared to previous studies in typically developing children from the same region of China and American children with ASD, respectively. Further, there were significant correlations between most CSHQ and SDQ domains. Female gender, older parental age, higher hyperactivity, and poorer prosocial behavior were associated with increased overall sleep disturbances.
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21
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O'Nions E, Gould J, Christie P, Gillberg C, Viding E, Happé F. Identifying features of 'pathological demand avoidance' using the Diagnostic Interview for Social and Communication Disorders (DISCO). Eur Child Adolesc Psychiatry 2016; 25:407-19. [PMID: 26224583 PMCID: PMC4820467 DOI: 10.1007/s00787-015-0740-2] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/05/2015] [Accepted: 06/26/2015] [Indexed: 11/30/2022]
Abstract
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.
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Affiliation(s)
- Elizabeth O'Nions
- Division of Psychology and Language Sciences, Developmental Risk & Resilience Unit, Clinical, Educational, and Health Psychology Research Department, University College London, London, UK. e.o'
- MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK. e.o'
| | - Judith Gould
- The NAS Lorna Wing Centre for Autism, Bromley, Kent, UK
| | - Phil Christie
- The Elizabeth Newson Centre, Sutherland House Children's Services (NORSACA), Nottinghamshire, UK
| | | | - Essi Viding
- Division of Psychology and Language Sciences, Developmental Risk & Resilience Unit, Clinical, Educational, and Health Psychology Research Department, University College London, London, UK
| | - Francesca Happé
- MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
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22
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Gillberg C, Gillberg IC, Thompson L, Biskupsto R, Billstedt E. Extreme ("pathological") demand avoidance in autism: a general population study in the Faroe Islands. Eur Child Adolesc Psychiatry 2015; 24:979-84. [PMID: 25398390 DOI: 10.1007/s00787-014-0647-3] [Citation(s) in RCA: 15] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/17/2014] [Accepted: 11/05/2014] [Indexed: 11/30/2022]
Abstract
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.
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Affiliation(s)
- Christopher Gillberg
- Gillberg Neuropsychiatry Centre (GNC), Sahlgrenska Academy, University of Gothenburg, Kungsgatan 12, 411 19, Gothenburg, Sweden,
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23
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Reilly C, Atkinson P, Menlove L, Gillberg C, O'Nions E, Happé F, Neville BGR. Pathological Demand Avoidance in a population-based cohort of children with epilepsy: four case studies. RESEARCH IN DEVELOPMENTAL DISABILITIES 2014; 35:3236-3244. [PMID: 25178706 DOI: 10.1016/j.ridd.2014.08.005] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 04/14/2014] [Revised: 08/01/2014] [Accepted: 08/04/2014] [Indexed: 06/03/2023]
Abstract
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.
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Affiliation(s)
- Colin Reilly
- Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden.
| | - Patricia Atkinson
- Child Development Centre, Crawley Hospital, West Green Drive, Crawley, West Sussex RH11 7DH, UK
| | - Leanne Menlove
- Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK
| | - Christopher Gillberg
- Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden
| | - Elizabeth O'Nions
- Clinical, Educational & Health Psychology, Division of Psychology & Language Sciences, University College London, 26 Bedford Way, London WC1E 7HB, UK
| | - Francesca Happé
- Francesca Happé MRC Social, Genetic & Developmental Psychiatry Centre, Institute of Psychiatry (PO 80), King's College London, Denmark Hill, London SE5 8AF, UK
| | - Brian G R Neville
- Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; Neurosciences Unit, Institute of Child Health, University College London, 4/5 Long Yard, London, WC1 N 3LU, UK
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24
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Gillberg C. Commentary: PDA--public display of affection or pathological demand avoidance?--reflections on O'Nions et al. (2014). J Child Psychol Psychiatry 2014; 55:769-70. [PMID: 24890260 DOI: 10.1111/jcpp.12275] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 12/11/2013] [Indexed: 11/28/2022]
Abstract
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.
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Affiliation(s)
- Christopher Gillberg
- Gillberg Neuropsychiatry Centre (GNC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
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