Mental health

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Keira’s story

Keira is 17 and currently doing very well after a 10 year struggle with an eating disorder and difficulties related to her PDA profile not being understood or supported by health and social care. Her story illustrates the life-changing impact when professionals adapt their practice to be person-centred and PDA-friendly. Sharon Donaldson, director of the specialist eating disorder unit where Keira was an in-patient, also shares how she and her team worked with Keira and her family to develop the personalised, holistic approach which was so key to achieving a successful outcome, and is now being shared with others as an example of best practice. TRIGGER WARNING: this case study contains information about eating disorders and distressed behaviours (including self-harm) and mention of suicidal intent. Please note that Keira’s name has been changed to protect her identity. Keira was first seen by CAMHS age 5 because of the distressed behaviours she was exhibiting, including self-harm and meltdowns. Her behaviour was attributed to ‘naughtiness’ and her parents were sent on a parenting course. However, two years later Keira was diagnosed with autism and ODD - a diagnosis that was subsequently revised to a PDA profile of autism. She was excluded from school aged [...]

Eating Disorder Support

This page signposts some sources of useful information and support regarding eating disorders. The PDA Society takes considerable care to check the services that we signpost, however we’re not responsible for the quality, experience or outcomes from third party organisations. When accessing services and support, it is likely that you’ll need to share information about the PDA profile of autism and what approaches are helpful with PDA with all the people (including clinicians) you are in contact with – please feel free to print off or send links to any of the information on our website. We’ve also put together some PDA-related suggestions for healthcare passports. PDA-informed resources Keira’s story Keira is 17 and currently doing very well after a 10 year struggle with an eating disorder and difficulties related to her PDA profile not being understood or supported by health and social care. Her story illustrates the life-changing impact when professionals adapt their practice to be person-centred and PDA-friendly. Sharon Donaldson, director of the specialist eating disorder unit where Keira was an in-patient, also shares how she and her team worked with Keira and her family to develop the personalised, holistic approach which was so key to achieving a successful outcome, and is now being [...]

PDA & school avoidance podcast with James

15 year old James shares his thoughts on why school is difficult for young people with a PDA profile. He openly talks about his experience of school and the daily challenges around demands, masking, sensory difficulties, school avoidance, friendships and transitions. He also offers some possible solutions and tips for teachers, and shares some coping strategies that have helped him along the way. A transcript of the episode is also available here. More about James' experience of PDA is also available on our website, including: PDA & masking with James (video) James' story (case study)     Listen on Anchor   Further information and resources about PDA for education professionals are also available on the 'Working with PDA' pages of our website.

PDA & masking with James

In this video 14 year old James kindly shares information about his experience of PDA and masking. Hi, I'm James and I'm 14 years old. I was diagnosed with PDA at the age of 12 and would like to share some information about masking. A lot of people with PDA such as myself often use what is known as a mask to hide emotions and avoid demands. Find out more in this video. A transcript of the video is also available here. More about James' experience of PDA is available to read here: James’ story.   Published by: PDA Society, July 2021   Watch on YouTube  

Role of Intolerance of Uncertainty and Anxiety

Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents This research was conducted by researchers at the Complex Neurodevelopmental Disorder Service and South Tyneside Community Team, Tyne and Wear NHS Foundation Trust, and School of Psychology, Newcastle University. The abstract concludes: "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."   Authors: Lisa Stuart, Victoria Grahame, Emma Honey, Mark Freeston Published: 22 May 2019, Child and Adolescent Mental Health   View paper

Disorders in childhood: Overview for paediatricians

Behavioural and emotional disorders in childhood: A brief overview for paediatricians This is a review of all relevant published literature relating to behavioural, emotional and developmental problems in children and adolescents. It is intended as a guide for clinicians and aims to raise awareness of the importance of recognising and diagnosing problems early on in childhood. The paper contains clear descriptions of how childhood behavioural and emotional disorders present clinically and how they are diagnosed using the universally recognised Diagnostic and Statistical Manual version 5 (DSM-5). The Extreme Demand Avoidance Questionnaire (EDA-Q) is mentioned for its value in diagnosing PDA. Challenging Behaviours (CB) are recognised to have a significant impact on an individual’s learning and social opportunities. The paper highlights potential difficulties with schooling, sleeping, family and later professional life. The prevalence and aetiology of mental health issues amongst young people with behavioural and emotional issues is also discussed. Current guidance for diagnosing and managing children with behavioural and emotional disorders is reviewed. Included are descriptions of the interventions available along with an overview of appropriate medications.   Author: Michael O Ogundele First published: World Journal of Clinical Pediatrics, February 8th 2018   View paper  

National Autistic Society PDA resources

Here are links to some of the National Autistic Society's PDA resources: Pathological Demand Avoidance (PDA) PDA - a guide for autistic adults PDA - a guide for parents and carers Pathological Demand Avoidance? An adult's perspective Post-diagnosis support - a guide for autistic adults Meeting the educational needs of pupils with a PDA profile National Autistic Society PDA Conferences Please see the National Autistic Society’s events page for information about the current year’s conference and summaries from previous conferences here: 2019, 2018, 2017, 2016.

Support for PDA adults

This page signposts some sources of useful information and support for PDA adults and their families. The PDA Society takes considerable care to check the services that we signpost, however we’re not responsible for the quality, experience or outcomes from third party organisations. When accessing services and support, it is likely that you’ll need to share information about the PDA profile of autism and what approaches are helpful with PDA with all the people (including clinicians) you are in contact with – please feel free to print off or send links to any of the information on our website. We’ve also put together some PDA-related suggestions for healthcare passports. Please note: The National Autistic Society provides lots of information, guidance and support for adults on the spectrum – whilst this may need some adaptation for PDA, the principles will remain the same. Where links are listed below, an * is included as a reminder that some adjustment may be needed to take account of demand avoidance. ​PDA specific support PDA Society Enquiry Line Service PDA Society Forum Support groups: please see details of online support groups for PDA individuals and families of PDA adults here. Helpful approaches Please see self-help, coping strategies & therapies page. For parents, [...]

Keys to care

A single page information sheet for supporting and helping a PDA person. Ideal for those working with individuals whose care-needs have been identified as relating to demand avoidance. Useful as a grab-sheet for members of staff - a regular reminder of what can help. Also helpful for family members or individuals who are trying to explain the essence of a PDA profile to those who care for them.   Published by: PDA Society   Download this PDF   A third party German translation of this resource is also available here.

Self-help, coping strategies and therapies for adult PDAers

These suggestions for self-help, coping strategies and therapies were assembled from a variety of first-hand accounts shared by adults, diagnosed or self-identifying as having a PDA profile (PDAers being their preferred term of reference), in books, blogs and on social media and from the other information for adults on the PDA Society website. A PDF version of this resource is also available to download here   View resource    

Adults: PDA & mental health

The following is a summary of Dr Judy Eaton's talk at the PDA Society Conference in Birmingham on 18th April 2018 Judy opened by sayings that people often ask her “what is this PDA? There was never this PDA when we were younger. Where were all these people?”. Her response is that actually they have always been there, and that she has found it both interesting and a privilege to talk to adults with PDA about their experiences. Introduction Judy shared a case study to highlight the need for early understanding of PDA and the urgent need to educate other professionals about the condition, particularly those working in adult services: James, a 41 year old man whose parents now feel PDA accurately describes, had received a diagnosis of autism as a child. Since leaving his specialist residential school for children with autism, where he was bullied, assaulted and was very unhappy, he has been sent to two different prisons and 7 different secure hospitals. He was placed under section 37 of the Mental Health Act, and subsequently detained under section 3 of the Mental Health Act with other patients who required very different management regimes to him. He was often very vulnerable and [...]

Being Misunderstood – 2018 Survey

Experiences of the PDA Profile of Autism Education, health and social care services are designed to be 'needs-based' and 'outcomes-focused'. While the intention is clear, there is a group of autistic people whose needs are frequently not identified in detail, not understood in practice and not fully communicated between professionals. As a result, outcomes are very poor. This was the conclusion of an extensive survey of almost 1,500 people into experiences concerning the Pathological Demand Avoidance profile of Autism. It was carried out in March 2018 by the PDA Society. Key findings: The results show that very many young people with a PDA profile of Autism are finding it very difficult or impossible to cope in the school environment, and the lack of support available from services means that families are often relying on their own research to work out how to support their children. The results demonstrated the ways in which difficulties persist into adulthood, exacerbated by a continued lack of understanding and support from services. Conclusions: It is concluded that it is in the interests of everyone that professionals are empowered to see the individual and focus on improving outcomes. For this to happen there are a number of recommendations, the most important being that local [...]

PDA and Mental Health Issues

In this webinar, Dr. Judy Eaton from Help4Pyschology looks at aspects of mental health in both autistic children and adults, and in particular, with a PDA profile. She explores anxiety, eating disorders and the relationship with personality disorders before going on to look the opportunities for support from family and friends. She finishes with consideration of inpatient services. An extended question and answer session follows. Recorded in July 2017 Please note: this webinar was recorded in 2017, it may therefore contain some outdated language and terminology.   Watch on YouTube   More webinars by Dr Judy Eaton, hosted by Operation Diversity Academy can be found below: Intro to PDA in children ​The child with PDA as a learner ​Strategies for managing PDA and mental health

Demand-Anxiety Cycle: resource template

A tool to help young people, parents & professionals understand demand avoidance and talk together. Tick boxes that apply, write on it, or edit the document…. Whatever works for you.   Download editable template   A third party German translation of this document (by a German parent of a PDA child) is also available here. Please note: the PDA Society is not able to verify the accuracy of translations listed on our website.  

Support for parents & carers

This page signposts some sources of useful information and support regarding health, social care, justice, benefits and more. The PDA Society takes considerable care to check the services that we signpost, however we’re not responsible for the quality, experience or outcomes from third party organisations. When accessing services and support, it is likely that you’ll need to share information about the PDA profile of autism and what approaches are helpful with PDA with all the people (including clinicians) you are in contact with – please feel free to print off or send links to any of the information on our website. We’ve also put together some PDA-related suggestions for healthcare passports. PDA specific support PDA Society Enquiry Line Service PDA Society Forum Local PDA support groups Online PDA support groups Training Recordings of our past Q&A sessions, where guest speakers with lived experience answer questions about PDA and specific topics, are available to purchase for 30 days via our training hub Mental Health Your first step in terms of accessing mental health support would normally be to contact your GP who will be able to refer you on to the relevant services, such as CAMHS (Child & Adolescent Mental Health Services). The following links may [...]

Blogs by Professionals

All links are independent and external to the PDA Society. Help for Autism and PDA by Dr Judy Eaton -Consultant Clinical Psychologist SmallTalk Speech & Language Therapy - blogs by Libby Hill, independent Speech and language therapist specialising in autism and PDA Raelene Dundon - Raelene is the Director of Okey Dokey Childhood Psychology in Melbourne, Australia. She is a registered Psychologist and holds a Masters Degree in Educational and Developmental Psychology.

PDA by PDAers

PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns This book is a collection of genuine insights and experiences from people living with PDA, adapted from their interactions on a popular online support group. It includes frank discussions of topics relevant to PDA, including work, relationships and managing meltdowns, making it a vital resource for both individuals and professionals. Author: Sally Cat Publisher: Jessica Kingsley Publishers   Find on publisher's website

Food Refusal and Avoidant Eating

Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions A Practical Guide for Parents and Professionals Many children with Autism Spectrum Disorder (ASD) have a restricted dietary range, and this book provides parents with suggestions and training on how to deal with this condition and achieve a healthier and more balanced diet. Now described as Avoidant or Restrictive Food Intake Disorder (ARFID), it is due to sensory hypersensitivity, and it can impact upon the health of the child, upon the family, and upon social integration. Based upon successful training packages the authors provide for parents and professionals, this book enables the reader to understand the condition and work with it, gradually increasing the range of food a child is able to eat. It includes 'box outs' with case studies, points of interest and action points to make this an accessible and resourceful read.   Authors: Elizabeth Shea and Gillian Harris Published by: Jessica Kingsley Publishers   Find on publisher's website

The Incredible 5-Point Scale

This much-awaited second edition of the popular Incredible 5-Point Scale is significantly improved and expanded. Using the same practical and user-friendly format as the first edition, Buron and Curtis let readers benefit from work done with the scales over the past 10 years, to result in refinements to the original scales, now considered classics in homes and classrooms across the country and abroad, as well as lots of new scales specifically designed for two groups of individuals: young children and those with more classic presentations of autism, including expanded use of the Anxiety Curve.  Another welcome addition is a list of goals and objectives related to incorporating scales in students IEPs.   Authors: Kari Dunn Buron and Mitzi Curtis Publisher: AAPC Publishing   Find on SEN Books

Mental Health Issues in Girls

A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support This book addresses the specific mental health needs of girls and young women with autism spectrum disorder (ASD). Looking at the ways autism presents differently in girls than in boys, and the mental health conditions that occur most frequently in girls with ASD, this is the essential guide for clinicians and educators on tailoring interventions and support to meet girls' needs. Describing the current assessment process for autism diagnosis, the book explains why girls are under- or mis-diagnosed, leading to later mental health issues. It outlines the types of intervention that are particularly helpful for working with girls to reduce anxiety, improve social interaction skills, and manage self-harm. The book also covers how to manage eating disorders and feeding difficulties, focusing on working with girls with sensory processing difficulties. There is information on how to deal with the emotional impact on parents, carers and families, and the challenges they face when negotiating appropriate psychological and educational support.   Author: Dr Judy Eaton Published by: Jessica Kingsley Publishers   Find on publisher's website

Survey of Professionals

​Overview ​Awareness of PDA has been growing rapidy in recent years. The National Autistic Society run annual conferences on the subject and research is now being conducted by a number of different institutions, so understanding of the condition is developing apace. ​Parents, schools and health and eductional professionals are finding that the management strategies that come with an understanding of PDA are extremely helpful for children and young people in their care. It is good news that thousands have been through training or attended conferences on PDA in the past year alone. ​However, although there is increasing understanding amongst a range of professional groups, the 'medical model' which underpins the practice of clinicians has been constraining some, particularly those who don't have sufficient experience of knowledge of the condition. ​Survey of Professionals Members of the PDA Society often talk about the difficulties of finding individual Autism practitioners with sufficient knowledge of Pathological Demand Avoidance syndrome to be confident that they are making an informed diagnosis. This is important, not for reasons of diagnosis itself, but because when usual ASD strategies are used, young people with PDA fail to progress whereas with the correct advice a significant difference can be made. In order to find out more, [...]