ID Guide Draft Pages 2  ## Metadata - Author: [[Katie Mabberley]] - Full Title: ID Guide Draft Pages 2 - Category: #articles - Document Note: --- tags: - #PDA - #AutismSpectrum - #ClinicalPractice - #Assessment - #Neurodiversity - #Healthcare - #Education - #Psychology Author: Katie Mabberley et al., for the PDA Society Source: PDA Society Practice Guidance (PDF) Reference: PDA Society – Identifying & Assessing a PDA profile: Practice Guidance (January 2022) https://www.pdasociety.org.uk/ date created: 2025-08-28 00:00 --- # Title: Identifying & Assessing a PDA Profile — Practice Guidance (Working Notes) ## Table of Contents: - [📚 Introduction](#-introduction) - [🌍 Context](#-context) - [🔑 Key Features of a PDA Profile](#-key-features-of-a-pda-profile) - [🧪 Assessments & Formulations](#-assessments--formulations) - [🤝 Post-Diagnostic Support](#-post-diagnostic-support) - [🧾 Conclusion](#-conclusion) - [📎 Appendices & References](#-appendices--references) - [🗒️ Notes](#-notes) - [🗣️ Paraphrase](#-paraphrase) - [📰 Newsletter](#-newsletter) - [✅ Action Items (Developer Advocate/OSPO alignment)](#-action-items-developer-advocateospo-alignment) - [🧪 Hypotheses](#-hypotheses) - [📊 Methodology](#-methodology) - [❓ Questions](#-questions) - [🔮 Future Research](#-future-research) - [💡 Implications](#-implications) - [🧠 Learning Styles Assessment](#-learning-styles-assessment) - [📊 Accessibility Assessment](#-accessibility-assessment) - [🌍 DEIB Assessment](#-deib-assessment) - [✅ Logical Validity](#-logical-validity) - [🛡️ DARVO Analysis](#-darvo-analysis) - [🔍 SEO Evaluation](#-seo-evaluation) - [🎯 Conclusion](#-conclusion-1) ### References: - PDA Society resources hub: https://www.pdasociety.org.uk/resources/ - What is PDA? booklet: https://www.pdasociety.org.uk/resources/what-is-pda-booklet - ESCAP practice guidance summary: https://link.springer.com/article/10.1007/s00787-020-01587-4 - British Psychological Society best practice (Working with Autism): https://www.bps.org.uk/ - Extreme Demand Avoidance Questionnaire (EDA-Q) original paper: https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.12266 - EDA-QA (adult self-report): https://link.springer.com/article/10.1007/s10803-018-3794-6 ## 📝 Summary: This guidance synthesizes multidisciplinary clinical experience to help practitioners identify and assess a PDA (Pathological/Pervasive/Extreme Demand Avoidance) profile within autism. It clarifies when to consider PDA, outlines distinguishing features and differential explanations for “marked demand avoidance,” suggests adaptations to assessments, and provides practical, low-arousal, autonomy-supportive strategies for post-diagnostic support. The contributors explicitly note limited clinically-based research and aim for “personalisation and contextualisation” in autism formulations to harmonize practice. Notable lines: - “Identification of PDA across the country is variable… with increased awareness, there has been some over-identification… it is hoped this guidance will lead to some harmonisation of practice.” - “The key is to reduce the ‘perception’ of demands and to provide a sense of control and autonomy.” ## 📖 Main Content: This document positions PDA as a clinically recognizable profile within autism characterized by pervasive demand avoidance driven by anxiety, control needs, and often intolerance of uncertainty. It stresses: - Thoughtful differential formulation: not all marked demand avoidance implies PDA; consider sensory processing, ADHD, developmental coordination disorder, trauma/attachment, typical developmental phases, and environment-skill mismatches. - Assessment pragmatics: adapt context, language, and structure to reduce perceived demand; expand observations; leverage informants; be alert to masking and home–school discrepancies. - Support focus: autonomy, flexibility, indirect communication, low arousal strategies, and coordinated multi-agency planning; avoid rigid reward/punishment and some conventional ASD strategies that may escalate avoidance. Personal insight: - The guidance’s emphasis on “understanding over terminology” is practical. The clinical pivot—from compliance to collaboration—parallels modern neurodiversity-affirming approaches and reflects a broader shift toward autonomy-supportive care. - The cautions regarding both under- and over-identification are critical for service design and triage, suggesting the need for shared language and training across MDTs, education, and social care. ### 🗒️ Notes - Audience and purpose - For clinicians in neurodevelopmental assessment; also useful for education/social care. - Goal: identify PDA profile, differentiate from other causes of demand avoidance, and guide support. - Context and terminology - Recognizes limited clinical research; consensus-based guidance. - Terminology is debated: “pathological” vs “pervasive/extreme” vs “demand avoidant profile;” understanding > label. - When to consider PDA - Persistent refusal of everyday tasks (even enjoyable/necessary). - Cases with multiple diagnoses or perplexing presentation. - ASD that “doesn’t quite fit,” ADHD overshadowing autistic traits, failure of usual supports. - Key features - Resists/avoids ordinary demands. - Social strategies in avoidance. - Superficial sociability; limited depth of social understanding. - Excessive mood swings/impulsivity. - “Obsessive” behavior often focused on people. - Comfortable with role play/pretend (not universal). - Distinguishing clinical observations - First meetings: either superficially socially able or markedly anxious/avoidant. - Speech/language: strong vocabulary; challenges in higher-level pragmatics and real-time social processing. - OT: sensory/self-regulation and interoceptive/vestibular issues common; distinguish sensory/coordination-driven avoidance from PDA-driven avoidance (can co-occur). - Social-emotional: high anxiety, low self-esteem, intolerance of uncertainty. - Ineffectiveness of traditional ASD or behavioral approaches; autonomy-supporting “PDA approaches” often transformative. - Other explanations for marked demand avoidance - Sensory processing differences, DCD, trauma/attachment, ADHD, typical development phases, COVID disruption. - Assessment adaptations - Flexible scheduling, locations, prep materials; indirect language (“I wonder…”); two-way mirror/covert observation; tolerate incomplete standard tools; more, shorter sessions. - Emphasize triangulation; attend to masking; use qualitative narratives from those closest to the person. - Tools - ASD tools: helpful but insufficient alone; beware masking. - PDA-oriented aids: EDA-Q/EDA-QA/EDA-8 (research aids, not diagnostic); DISCO PDA items; modified Coventry Grid; ADOS-2 patterns (more “3s” due to disengagement) may be informative. - Formulation & terminology - Use ASD with PDA profile/extreme/pervasive demand avoidance. Avoid “traits/symptoms” to prevent minimization. - Working diagnosis may be appropriate; assess and formulate co-occurring conditions. - Post-diagnostic support - Reduce perceived demands; promote control/autonomy; low arousal; indirect communication; coordinated multi-agency plans; medication/OT/SLT for co-occurring needs. - Emphasize strengths: justice, creativity, humor, tenacity. ## 📖 References: See “References” section above; additional: - Royal College of Psychiatrists CR228 (Autism in Adults): https://www.rcpsych.ac.uk/ - PDA Society training/events: https://www.pdasociety.org.uk/events-training-landing - “Keys to Care” (in-patient settings): https://www.pdasociety.org.uk/resources/keys-to-care ## 🗣️ Paraphrase: 1) Original idea: “Identification of PDA across the country is variable… there has been some over-identification… it is hoped that this guidance will lead to some harmonisation of practice.” - Paraphrase: Recognition of PDA remains inconsistent—some services resist it while others over-apply it—so this document seeks to bring assessments into better alignment across settings. 2) Original idea: “The key is to reduce the ‘perception’ of demands and to provide a sense of control and autonomy… many ‘PDA approaches’ are counterintuitive… yet often prove transformational.” - Paraphrase: Support should lower how demanding situations feel and increase autonom - Summary: This document is a practice guidance produced by the PDA Society, providing information on identifying and assessing a PDA (Pathological Demand Avoidance) profile. It explains the origins of the term and its relation to autism, as well as the key features of a PDA profile. The document emphasizes the importance of recognizing a PDA profile in order to provide appropriate support and intervention strategies. It also acknowledges the need for further research in this area and highlights the inclusion of PDA in guidance from organizations such as the Royal College of Psychiatrists and the British Psychological Society. - URL: https://readwise.io/reader/document_raw_content/73315312 Full text of this document omitted because this document is a PDF [Download original file →](https://readwise.io/reader/document_raw_content/73315312), ID Guide Draft Pages 2, Katie Mabberley, 01hc589eeb25kqneymd8qzh7cw.