Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme/'pathological' demand avoidance.

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.

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.

Development of the 'Extreme Demand Avoidance Questionnaire' (EDA-Q): preliminary observations on a trait measure for Pathological Demand Avoidance.

BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: Our findings highlight the potential utility of the EDA-Q to assist the identification of this unusual profile for future research.

Diagnosing autism spectrum disorder: who will get a DSM-5 diagnosis?

BACKGROUND: Introduction of proposed criteria for DSM-5 Autism Spectrum Disorder (ASD) has raised concerns that some individuals currently meeting diagnostic criteria for Pervasive Developmental Disorder (PDD; DSM-IV-TR/ICD-10) will not qualify for a diagnosis under the proposed changes. To date, reports of sensitivity and specificity of the new criteria have been inconsistent across studies. No study has yet considered how changes at the 'sub domain' level might affect overall sensitivity and specificity, and few have included individuals of different ages and ability levels. METHODS: A set of DSM-5 ASD algorithms were developed using items from the Diagnostic Interview for Social and Communication Disorders (DISCO). The number of items required for each DSM-5 subdomain was defined either according to criteria specified by DSM-5 (Initial Algorithm), a statistical approach (Youden J Algorithm), or to minimise the number of false positives while maximising sensitivity (Modified Algorithm). The algorithms were designed, tested and compared in two independent samples (Sample 1, N = 82; Sample 2, N = 115), while sensitivity was assessed across age and ability levels in an additional dataset of individuals with an ICD-10 PDD diagnosis (Sample 3, N = 190). RESULTS: Sensitivity was highest in the Initial Algorithm, which had the poorest specificity. Although Youden J had excellent specificity, sensitivity was significantly lower than in the Modified Algorithm, which had both good sensitivity and specificity. Relaxing the domain A rules improved sensitivity of the Youden J Algorithm, but it remained less sensitive than the Modified Algorithm. Moreover, this was the only algorithm with variable sensitivity across age. All versions of the algorithm performed well across ability level. CONCLUSIONS: This study demonstrates that good levels of both sensitivity and specificity can be achieved for a diagnostic algorithm adhering to the DSM-5 criteria that is suitable across age and ability level.

Autism spectrum disorders in the DSM-V: better or worse than the DSM-IV?

The DSM-V-committee has recently published proposed diagnostic criteria for autism spectrum disorders. We examine these criteria in some detail. We believe that the DSM-committee has overlooked a number of important issues, including social imagination, diagnosis in infancy and adulthood, and the possibility that girls and women with autism may continue to go unrecognised or misdiagnosed under the new manual. We conclude that a number of changes need to be made in order that the DSM-V-criteria might be used reliably and validly in clinical practice and research.

Autism and mental health: your guide to today's mental health issues.

Autism is not a mental health disorder, but it sometimes is misdiagnosed as one--and can bring its own mental health issues. Dr Judith Gould explains how a mental health problem may mask an undiagnosed autistic spectrum disorder.

Non-standard assessment practices in the evaluation of communication in Australian Aboriginal children.

Australian Aboriginal children typically receive communication assessment services from Standard Australian English (SAE) speaking non-Aboriginal speech-language pathologists (SLPs). Educational assessments, including intelligence testing, are also primarily conducted by non-Aboriginal educational professionals. While the current paper will show that non-Indigenous SLPs can conduct valid communication assessments with Indigenous children, it will also be shown that educational assessments do not always benefit the child being assessed, and may sometimes do harm to Aboriginal children. Many of the issues surrounding the assessment of Australian Aboriginal children by non-Aboriginal SLPs are similar to those encountered in other countries where Indigenous populations represent a minority. Very little research has been conducted within Australia to examine this issue. This paper presents overviews of case studies from a longitudinal research project designed to examine the topic of cross-cultural speech-language pathology assessment with Indigenous children, making specific reference to the situation in Australia.

Describing the sensory abnormalities of children and adults with autism.

Patterns of sensory abnormalities in children and adults with autism were examined using the Diagnostic Interview for Social and Communication Disorders (DISCO). This interview elicits detailed information about responsiveness to a wide range of sensory stimuli. Study 1 showed that over 90% of children with autism had sensory abnormalities and had sensory symptoms in multiple sensory domains. Group differences between children with autism and clinical comparison children were found in the total number of symptoms and in specific domains of smell/taste and vision. Study 2 confirmed that sensory abnormalities are pervasive and multimodal and persistent across age and ability in children and adults with autism. Age and IQ level affects some sensory symptoms however. Clinical and research implications are discussed.

The Diagnostic Interview for Social and Communication Disorders: background, inter-rater reliability and clinical use.

BACKGROUND: The Diagnostic Interview for Social and Communication Disorders (DISCO) is a schedule for the diagnosis of autistic spectrum and related disorders and assessment of individual needs. It enables information to be recorded systematically for a wide range of behaviours and developmental skills and is suitable for use with all ages and levels of ability. In addition to helping the clinician to obtain a profile of each individual's pattern of development and behaviour, the DISCO also enables identification of specific features found in autistic spectrum disorders that are relevant for use with established diagnostic systems. METHOD: This paper describes the historical background of the DISCO, outlines its structure and reports the results of an inter-rater reliability study with parents of 82 children aged 3 to 11 years with autistic spectrum disorder, learning disability, language disorder or typical development. RESULTS: Inter-rater reliability for the items in the interview was high (kappa coefficient or intra-class correlation at .75 or higher). This level of agreement was achieved for over 80% of the interview items.

The Diagnostic Interview for Social and Communication Disorders: algorithms for ICD-10 childhood autism and Wing and Gould autistic spectrum disorder.

BACKGROUND: The Diagnostic Interview for Social and Communication Disorders (DISCO) is an interviewer-based schedule for use with parents and carers. In addition to its primary clinical purpose of helping the clinician to obtain a developmental history and description of the child or adult concerned, it can also be used to assist in providing a formal diagnostic category. METHOD: In this study we compared two algorithms based on the ninth revision of the schedule (DISCO 9). The algorithm for ICD-10 childhood autism comprised 91 individual, operationally defined items covering the behaviour outlined in the ICD-10 research criteria. The algorithm for the autistic spectrum disorder, as defined by Wing and Gould (1979), was based on 5 DISCO items that represented overarching categories of behaviour crucial for the diagnosis of autistic disorders. The aim of the study was to examine the implications for clinical diagnosis of these two different approaches. Parents of 36 children with clinical diagnoses of autistic disorder, 17 children with learning disability and 14 children with language disorders were interviewed by two interviewers. Algorithm diagnoses were applied to interview items in order to analyse the relationship between clinical and algorithm diagnoses and the inter-rater reliability between interviewers. RESULTS: Clinical diagnosis was significantly related to the diagnostic outputs for both algorithms. Inter-rater reliability was also high for both algorithms. The ICD childhood disorder algorithm produced more discrepant diagnoses than the Wing and Gould autistic spectrum algorithm. Analysis of the ICD-10 algorithm items and combination of items helped to explain the reason for these discrepancies. CONCLUSIONS: The results indicate that the DISCO is a reliable instrument for diagnosis when sources of information are used from the whole interview. It is particularly effective for diagnosing disorders of the broader autistic spectrum.