Studies & Commentaries

Surveys, essays, and studies which shed light and help explain experiences

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Summary of peer research into PDA by Sally Cat

This blog post covers Sally Cat's motivations for carrying out peer research on PDA, including the evidence and knowledge gaps that she wanted to help fill. It summarises two different pieces of peer research she has conducted: Her 2016 'Big Traits' study, which took a list of potential PDA traits created by peer suggestions, and tested their prevalence with PDA people and non-PDA autistic people. Analysis (some of which was conducted by Grace Trundle, a PhD student at the University of Nottingham), showed significant differences between these two groups for the majority of the traits, with the PDA group scoring higher in every instance. Sally Cat also disaggregated the results by gender, a process that highlighted some markedly different female and male experiences for some of the traits.   Her 2018 Masking and Social Mimicry peer study, which aimed to investigate the nature of masking for PDA people. Participants included PDA people and non-PDA autistic people, as well as non-autistic people. More than half of participants in the PDA group felt their masking was hardwired and automatic. PDA and non-PDA autistic females were more likely than PDA males to think of their masking as automatic.   Sally Cat concludes by highlighting the [...]

Parental Blame and the PDA Profile of Autism

This report presents the findings of a survey of 1016 parents and carers of PDA children. The aims of the survey were: to explore how prevalent parental blame is among families with PDA children to identify any patterns around when, how and why parental blame manifests to find out if there are any types of parents/carers who are more susceptible to being blamed for their PDA child's presentation to learn about how this feels for parents/carers. The report centres parents' and carers' voices and experiences throughout. 88% of parents/carers completing the survey said that they had felt blamed for some aspect of their PDA child's presentation or "lack of progress". The authors conclude that when parents/carers are blamed for their PDA child's presentation, it is the child that ultimately suffers. Their analysis showed that families headed by either a lone mother and/or a neurodivergent parent are most at risk of blame in the form of safeguarding. The report concludes with the changes that parents and carers would like to see, and notes the need for more autism/PDA professionals. Please note that the report contains sensitive content, including references to parent blame, self-harm, and suicide. Authors: Alice Running and Danielle Jata-Hall Published: February 2023   View report   Further resources: Education, health, [...]

What can be learnt from parents about school avoidance in Autistic pupils?

What can we learn from parents and caregivers of school-aged Autistic children to inform current Emotionally Based School Avoidance (EBSA) intervention approaches in England? A small study written as part submission to MEd Special Education Autism (Children) University of Birmingham. Author: Amelia Green BSc (hons) Psychology, GMBPsS This study was designed to understand Government and Local Authority (LA) approaches to school attendance and to supporting Autistic school-aged children who struggle with Emotionally Based School Avoidance (EBSA). It obtained the viewpoint of 1,200 parents and carers to see what may be learnt to inform the current approach. The statistics and study have some very powerful, relatable and at times hard to read results, with quotes that very much resonate with what we hear daily at the PDA Society. Content warning: parent blame, self-harm and suicide. 45% of 1,026 respondents reported that their child either had a diagnosis of PDA they or suspected PDA and the author notes that "the data presented also requires further investigation, such as if there is a correlation between EBSA and Pathological Demand Avoidance (PDA) as shown in Figure 2. Future research should explore this to identify correlations and inform approaches to EBSA". The study concludes that it is clear that [...]

PDA Society 5th anniversary survey report

A report on the main findings of our 5th anniversary survey conducted in Oct/Nov 2020, with statistics and comments from respondents, along with a summary of what the PDA Society is planning during 2021 can be viewed/downloaded here. The main findings are summarised below. It was very encouraging to know that our work has had a positive impact in terms of improving understanding of an otherwise perplexing presentation - and that this has been transformational in terms of outcomes our information & resources are highly regarded - and the PDA Society is viewed as trusted and professional the information & support we offer is unique and not found elsewhere There’s a strong call for the PDA Society to raise awareness of PDA with the general public further understanding & acceptance amongst professionals This survey shows that we’ve had a very positive impact in our first 5 years as a registered charity. We’d like to thank the PDA Society team, the vast majority of whom are volunteers, for all their expertise, experience and commitment, and for spending so much time and energy helping others. Looking ahead to the next 5 years, the PDA Society’s primary aims are: to increase acceptance and understanding of the [...]

A critical-insider perspective

A critical-insider perspective on PDA and parenting. Paula Sanchez first presented her perspective to the Participatory Autism Research Collective (PARC) meeting in 2018. Her work goes back to the accounts of Asperger and finds that some of his descriptions includes traits that might be reflected in the PDA profile. She explains: "My aim for the presentation was to explore and ponder the tensions between my experience and observations, including the usefulness of PDA for me as a parent, and the clinical and academic construct of PDA. In essence, I am seeking to balance my pragmatic use of PDA as a signpost and shorthand for me as a parent, with my ideological and theoretical concerns about PDA for me as a fledgling academic."   Author: Paula Sanchez   View article

Child Behaviour & Parenting Strategies

The Child Behaviour and Parenting Strategies study was designed to investigate links between child behaviour and parenting strategies, as well as many other factors, with a particular focus on children with developmental disabilities such as autism spectrum disorder (ASD). This is an update on preliminary findings from the study, which was led by Dr Liz O’Nions, Prof. Ilse Noens (KU Leuven, Belgium) and Prof. Francesca Happé (King’s College London, UK). It describes PDA's research background, refers to the debate on whether it should be considered a sub-group or part of a continuum and makes suggestions for resolving the debates around diagnosis. Amid that context, the study provides some detailed and important material on demands in ASD, looking at why demands can be difficult and develops a theoretical model as to how avoidance may develop. It also describes the nature of adapted parenting and recognises the ways in which the parent's often find there is a particular turning point which enables them to help their child better.   Authors: Dr Liz O’Nions, Prof. Ilse Noens and Prof. Francesca Happé, 2019   View research update  

Differences Between PDA and Non-PDA Autism

A Demonstration of Differences Between PDA and Non-PDA Autism, a transcript of a presentation by Sally Cat at The Autism Show at ExCeL London on 15th June 2019 Sally's introduction explains: "Hello, I’m Sally Cat I am a PDAer This means my neurology fits the Pathological Demand Avoidance profile, which is currently classed as an Autism Spectrum Condition. PDA is much more than the eponymous demand avoidance. The data I'm presenting is from a large study I ran in 2016 which compares the ranking of 155 potential distinct PDA traits between PDA and non-PDA autistic respondents. These 155 traits were whittled down from a preliminary 228 suggested by members of the adult PDA community via a preliminary in-group study. My role was coordinator, rather than leader (more PDA-friendly, as we none of us like to be led). I am not a trained researcher. My interest was, and is, bottom up: a member of the adult PDA community seeking answers in the face of academic ignorance towards adult PDA. Being an enthusiastic amateur (and pathologically avoidant) I did not seek ethical approval for the study. What I did achieve was to galvanise 90 non-PDA autistics and a whopping 290 PDA adults to participate. I should point out [...]

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 [...]

Regional results – Being Misunderstood survey

Our Being Misunderstood report published in May 2018 demonstrated the ways in which the PDA profile was being recognised by some clinicians but not by others. It highlighted the poor quality of services and lack of help being provided by those who seek help from CAMHS, and also demonstrated the significant numbers of young people who are either struggling to get into school or who are home-educated. In a further series of reports the key data are broken down by region. It is hoped these will be of interest to autism advocates and charities as well as service providers. This should give new impetus to the drive to ensure that families are given good advice in the form of tailored support that is essential for all those with autism and specific understanding of the approaches that are helpful with PDA (helpfully summarised by our Panda Ambassador). The reports also include many of the comments from survey participants, bringing to life the lived experience, with most feeling that they are fighting an uphill battle for their child to be understood and well-supported. Participants also told us of the greatest rewards of living with PDA, which are included in our section on positive PDA. The reports can be accessed via these [...]

‘Natures answer to over-conformity’: deconstructing PDA

Abstract Throughout its history autism has been primarily defined in terms of a pathologised deviancy from normative cognitive functionality, despite protestations to the contrary from autistic writers (Sinclair, 1993, Arnold, 2010, Milton, 2011). More recently however, we have witnessed the wider acceptance of a construction concerning a perceived pervasive developmental disorder known as Pathological Demand Avoidance syndrome (PDA). This conceptualisation was first formulated by Elizabeth Newson in the 1980’s (PDA Contact Centre, 2012), yet more recently has been recognised by the National Autistic Society as a variant of an autistic spectrum disorder (ASD). This paper deconstructs the psychologisation of autistic agency inherent in the theory supporting PDA, through a personal reflection of an autistic activist and academic who according to such a perspective may well have met the criteria for PDA when a child. This paper concludes by arguing that the label of PDA represents the medicalising and pathologising of behaviours that from an outsider perspective seem to be differentiated from what is deemed capable by autistic people, but could be seen as the behaviours of an autistic person who has gained a modicum of normative social skills and is simply asserting their agency. By pathologising such behaviour, one could unduly [...]

Being Misunderstood in Education

There is currently significant interest in the numbers of children and young people who are excluded from school or find themselves unable to get into school and end up either at home or some form of alternative provision. The Children's Commissioners' 2019 report ‘Skipping School’ and the Dispatches programme that went alongside it highlighted some of the issues. The conclusions drawn related to some of the key concerns from a systemic point of view: a focus on schools which are most likely to fail families; action against unregistered schools; and safeguarding measures. At the PDA Society, we believe that much more could be said and done on the subject of availability of services and support for children and families, and so we are hoping this will be explored further in the ongoing research. To demonstrate the need, we have published 'Being Misunderstood in Education'. The information expands on the Being Misunderstood report we published in May 2018, and is based on the same dataset and this time includes many comments from parents. The proportion of individuals with the PDA profile who don’t survive the school environment, at 70%, is truly significant. It is hoped that the Children's Commissioner and others will review what [...]

Hertfordshire families

A survey of 38 families in Hertfordshire showed that many felt desperate and a majority described how local services had not helped them. These results were published with a call to action, with the support of local Autism charities, and taken to the Herts All-Age Autism Partnership Board with a call for leadership on recognising PDA.   Published: 2017   View report  

CRAE research on exclusion

Back to school: Paving the path to re-integration for autistic children previously excluded from education The Centre for Research on Autism in Education conducted a research project for the NAS into what helped young people who had been excluded to be re-integrated into school. They looked at the work of the ‘Hub’ at the NAS Robert Ogden School in Rotherham. The work is helpful in relation to PDA because (although it’s not specifically described in the report) 6 of the 9 pupils involved, and three quarters of all the young people at the Hub, have a PDA profile. It should be noted that the school informed us that more information could have been included about the positive outcomes and what students moved on to do, so the report should be read with that gap in mind.   Authors: Janina Brede, Anna Remington, Lorcan Kenny, Katy Warren and Liz Pellicano Published: University College London for the National Autistic Society, 2016   View report  

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, [...]