top of page
Journal Articles
Filter by Keyword
The experience of mothers of autistic children with a pathological demand avoidance profile: an interpretative phenomenological analysis
Sam Curtis, Elizabeth Izett
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...
Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders
E Newson, K Le Maréchal, C David
Abstract
A proposal is made to recognise pathological demand avoidance syndrome (PDA) as a separate entity within the pervasive developmental disorders, instead of being classed under “pervasive developmental disorder not otherwise specified” (PDDnos, DSM-IV).10 Discriminant functions analysis shows PDA to be significantly different on many counts from classic autism and Asperger’s syndrome, both separately and together, including an equal sex ratio (150 cases). Demand avoidance using social manipulation is seen in all children, which strongly contrasts with the features of autistic spectrum disorders. A criterial structure is described, supported by statistical data from a random sample of 50 children diagnosed with PDA, together with a follow up sample of 18 young adults.
Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents
Lisa Stuart, V. Grahame, E. Honey, M. Freeston
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
Pathological Demand Avoidance: Exploring the Behavioural Profile
O'Nions, E., et al.
Abstract
‘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.
Methods of studying pathological demand avoidance in children and adolescents: a scoping review
Haire L, Symonds J, Senior J and D’Urso G
Abstract
The construct of pathological demand avoidance (PDA) is relatively new and contested. Clinical reports indicate a population who obsessively resist everyday demands and have an extreme need for control. Children and adolescents who might experience PDA, and their families, struggle significantly in their daily lives, creating a need for more research into the phenomenon. To assist the developing research field, this scoping review focuses on the methodologies used to study PDA in children and adolescents. A systematic search of six databases and grey literature uncovered 57 unique records after duplicates were removed. 21 documents containing 22 studies were retained for analysis. Of the 22 studies, 21 were from the UK and one was from the Faroe Islands. There were 18 quantitative analyses and 11 qualitative analyses. Half of the studies were cross-sectional and quantitative and almost half used mixed methods. Samples were non-representative and studies often used comparison groups of children with and without PDA. Researcher’s conceptualizations of PDA were coded into categories of emotional, socio-cognitive, and neurological differences. Studies of PDA focused mostly on PDA symptoms, mechanisms, and precipitants, with fewer studies of PDA origins and problems resulting from PDA or possible supports for individuals. The EDA-Q and the DISCO were the main measures used to identify PDA. Quantitative data were often analyzed using inferential statistics, and qualitative data were analyzed using thematic analysis, content analysis, and narrative summaries. Implications for future research are discussed.
Pathological demand avoidance in children and adolescents: A systematic review
Kildahl, Arvid N; Helverschou, Sissel B; Rysstad, Anne L; Wigaard, Elisabeth; Hellerud, Jane MA; Ludvigsen, Linn B; Howlin, Patricia
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.
Transgender and gender diverse autistic adults' experiences of (un)belonging
Katie Munday, Steven K. Kapp, Charlotte Morris
Abstract
Clinical impressions suggest a significant overlap of autistic as well as transgender and gender diverse (TGD) identities, implying a need for research that explores TGD autistic experiences in greater depth, including experiences of (un)belonging. We shared trans and gender diverse autistic adults' experiences of belonging and unbelonging to contribute to knowledge around their lived experiences. We present findings from biographical narrative interpretive interviews with thirteen TGD autistic people (aged 20–50). We used reflexive thematic analysis to generate themes across three levels of belonging: macro, encompassing work and volunteering; meso, including education, gender identity healthcare, and neurodivergent groups and spaces; and micro, including relationships and creating chosen families. Participants faced workplace exclusion and healthcare gatekeeping, often turning to self-employment or community spaces for inclusion. Chosen families and communal living were key sources of affirmation and support for participants, highlighting how belonging for TGD autistic people can be shaped through intersecting structural, social, and interpersonal factors.
Research-Based Strength-Based Teaching and Support Strategies for Twice-Exceptional High School Students with Autism Spectrum Disorder
Sally M Reis, Sara J Renzulli
Abstract
In the last five years, several scholars have collaborated in an integrated research program focused on students identified with both academic talents and autism spectrum disorder (2eASD) with support from a Javits Gifted and Talented Students Education grant. Several different empirical studies were initiated and completed during this period, investigating the ways in which some of these twice-exceptional students have been able to be successful in secondary school and highly competitive colleges. In this article, we summarize findings from several of these studies, synthesizing implications and recommendations with a goal of offering research-based practices, especially related to healthy social and emotional development and strong academic achievement in students identified as 2eASD.
Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice
Kathy Leadbitter, Karen Leneh Buckle, Ceri Ellis, Martijn Dekker
Abstract
The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.
Neurobiological insights into twice-exceptionality: Circuits, cells, and molecules
Benjamin A. Kelvington, Thomas Nickl-Jockschat, Ted Abel
Abstract
This article explores the neurobiological aspects of twice-exceptionality (2e), where individuals exhibit exceptional talents alongside disabilities. It discusses how distinct neural circuits and neuroplasticity may contribute to the unique learning profiles of 2e learners, emphasizing the need for further research in this area. Understanding these neurobiological mechanisms could enhance support for 2e individuals by identifying their strengths and addressing their challenges.
Examining the Link Between ADHD Symptoms and Menopausal Experiences.
Lauren Chapman, Kanak Gupta, Myra S Hunter, Eleanor J Dommett
Abstract
Objectives: Interest in the role of female hormones in ADHD has grown in recent years and, with an increasing number of women diagnosed with ADHD later in life, it is important hormonal changes across the lifespan are considered. This exploratory study examines the relationships between ADHD status (diagnosis and medication use) and symptoms, and menopause stage (pre/peri/post) and symptoms. Methods: Employing a cross-sectional approach, we recruited a sample of 656 women aged 45 to 60 years, of which 245 had an existing diagnosis of ADHD. Women completed several questionnaires assessing their ADHD symptoms (Adult Self-Report Scale, ASRS) and menopausal experiences (Women's Health Questionnaire, WHQ; Menopause-Specific Quality of Life Questionnaire, MENQoL; Hot Flush Rating Scale, HFRS; Hot Flush Related Daily Interference Scale, HFDIS). Results: ANCOVA revealed no significant effects of an ADHD diagnosis or interaction effects between diagnosis and menopause stage after applying an FDR correction. Similarly, when medication was considered (i.e., non-ADHD, ADHD with medication, and ADHD without medication) there were no main effects of group or interaction effects with menopause stage. Conclusions: These results indicate women with ADHD do not experience greater menopausal complaints than women without at any menopausal stage. However, there were significant correlations between ADHD symptoms and menopausal complaints across all participants but at a group level, these were less prominent in those with ADHD, which could indicate different attribution of symptoms in women with ADHD. Future research should further explore menopause in women with ADHD considering longitudinal designs and qualitative studies to examine potential overlap of symptoms and symptom attribution.
Prevalence and correlates of psychiatric comorbidities in children and adolescents with full and subthreshold avoidant/restrictive food intake disorder
P. Evelyna Kambanis, Kuhnle, M.C., Wons, O.B., Jo, J.H., Keshishian, A.C., Hauser, K., Becker, K.R., Franko, D.L., Misra, M., Micali, N., Lawson, E.A., Eddy, K.T. and Thomas, J.J.
Abstract
Objective:
We aimed to characterize the current and lifetime prevalence of comorbid psychiatric diagnoses and suicidality in treatment- and nontreatment-seeking individuals with full and subthreshold avoidant/restrictive food intake disorder (ARFID). We also sought to examine unique associations between the three DSM-5 ARFID profiles (i.e., sensory sensitivity, fear of aversive consequences, and lack of interest in food or eating) and specific categories of psychiatric diagnoses and suicidality.
Method:
We conducted structured clinical interviews with 74 children and adolescents with full or sub threshold ARFID to assess the presence of comorbid psychiatric diagnoses, suicidality, and the severity of each of the three ARFID profiles.
Results:
Nearly half of the sample (45%) met criteria for a current comorbid psychiatric diagnosis, and over half (53%) met criteria for a lifetime comorbid diagnosis. A total of 8% endorsed current suicidality and 14% endorsed lifetime suicidality. Severity in the sensory sensitivity profile was uniquely associated with greater odds of comorbid disorders in the neurodevelopmental, disruptive, and conduct disorders category; the anxiety, obsessive-compulsive, and trauma-related disorders category; and the depressive and bipolar-related disorders category. Severity in the fear of aversive consequences profile was associated with greater odds of disorders in the anxiety, obsessive-compulsive, and trauma-related disorders category.
Discussion:
Our findings underscore the severity of psychopathology among individuals with ARFID and related presentations, and also highlight the potential that shared psychopathology between specific ARFID profiles and other psychiatric disorders represent transdiagnostic constructs (e.g., avoidant behavior) that may be relevant treatment targets.
bottom of page
