title: Pathological Demand Avoidance in a population-based cohort of children with epilepsy: four case studies.
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.
authors.affiliation: Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden. Electronic address: creilly@youngepilepsy.org.uk.
authors.forename: Colin
authors.initials: C
authors.lastname: Reilly
authors.affiliation: Child Development Centre, Crawley Hospital, West Green Drive, Crawley, West Sussex RH11 7DH, UK.
authors.forename: Patricia
authors.initials: P
authors.lastname: Atkinson
authors.affiliation: Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK.
authors.forename: Leanne
authors.initials: L
authors.lastname: Menlove
authors.affiliation: Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden.
authors.forename: Christopher
authors.initials: C
authors.lastname: Gillberg
authors.affiliation: Clinical, Educational & Health Psychology, Division of Psychology & Language Sciences, University College London, 26 Bedford Way, London WC1E 7HB, UK.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: O'Nions
authors.affiliation: Francesca Happé MRC Social, Genetic & Developmental Psychiatry Centre, Institute of Psychiatry (PO 80), King's College London, Denmark Hill, London SE5 8AF, UK.
authors.forename: Francesca
authors.initials: F
authors.lastname: Happé
authors.affiliation: 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.
authors.forename: Brian G R
authors.initials: BG
authors.lastname: Neville
mesh_terms: D001289:Attention Deficit Disorder with Hyperactivity / Q000523:psychology*; D019958:Attention Deficit and Disruptive Behavior Disorders / Q000523:psychology; D002648:Child; D002653:Child Behavior Disorders / Q000523:psychology*; D002659:Child Development Disorders, Pervasive / Q000523:psychology*; D002675:Child, Preschool; D015331:Cohort Studies; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D019957:Motor Skills Disorders / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: Autism Spectrum Disorder; Epilepsy; Pathological demand avoidance