Liz O'Nions (who developed the EDA-Q - Extreme Demand Avoidance Questionnaire) is undertaking some new research. PDA isn't mentioned explicitly in the study materials, partly because they're hoping to recruit a broader sample who score across a range of related traits. Please see summary below and follow the link for more information and to sign up if you would like to participate. We are looking for parents/carers of children aged 6 – 16 who live in the UK/Europe to take part in research looking at social aptitudes and child behaviour problems. Taking part would involve you completing some questionnaires about your perspectives on your child’s behaviour, and the strategies and approaches that you use to manage it. The questionnaires measure things like your child’s social skills, anxiety, difficulties with peers, and non-compliant or demand avoidant behaviour. We have also included questionnaires looking at what strategies you use to manage behaviour and how you interact with your child, as well as your feelings about how you handle difficult behaviour.

Research – PDA Society

Q: Progressing the Research

On Tuesday 8th January 2019, the PDA Society hosted a research meeting to share current findings, thinking and insights around the 'PDA profile’ of autism by academic researchers and other stakeholders. The aim was to share existing research work, build greater common understanding, identify research priorities and focus on what can be done to help. 31 participants came from across the UK and Ireland and all found the meeting to be worthwhile and positive. Thank you to Francesca Happé for her support for the meeting and providing the venue at King's College London, and to Kevin Cooper who provided funding for the event. This area of research is in its infancy, with a range of perspectives currently evident, so it's essential that more high quality research is undertaken in order to increase our understanding of autism as a whole, and demand avoidance specifically, and reduce the possibility of autistic individuals being disadvantaged or discriminated against. One area of strong agreement was that autism generally is not well understood or supported by services. The PDA Society took away from the meeting the importance of developing a cohesive and inclusive argument for change. Dame Uta Frith chaired the event and finished by acknowledging that many of us felt some confusion about the mixed conclusions of research to date, but that confusion is an important part of the process and a step on the path towards understanding! The PDA Society will be continuing to encourage collaboration by hosting a 'research hub' to keep the community in touch with developments. If you are a researcher with an interest in this area, please get in touch to find out more . A short report on the meeting will be produced.

Q: Commentary on Prof Green Lancet article published

In the July issue of The Lancet Child & Adolescent Health Journal a commentary entitled " Demand avoidance is not necessarily defiance ", written by O'Nions, Happe, Viding, Gould and Noens was published. This was a response to the article " Pathological Demand Avoidance: symptoms but not a syndrome " written by Green and colleagues in the same publication in March. The authors state that they "are concerned that conceptualising pathological (or extreme) demand avoidance as a set of co-morbidities, including oppositional defiant disorder, could encourage the automatic use of reinforcement based approaches to alter the child’s response to demands" and that "over time, inappropriate management would probably promote rapid escalation of extreme behaviour in response to demands, which might generalise to other triggers". They welcome "Green and colleagues’ proposal that behaviours described in extreme demand avoidance be systematically assessed and included within diagnostic formulations" but importantly "argue against the application of terms such as oppositional defiant disorder, on the basis that the term defiant suggests that the difficulties result from the child’s wilfulness." They "argue for much-needed research to establish what interventions are most effective for problematic demand avoidance in autism spectrum disorder" and for "establishing evidence based interventions to help such children". The PDA Society feels that this is a timely and helpful contribution to the debate.

Q: Survey Results Published

The PDA Society today published a report which reveals how a group of autistic people is at especially high risk of being misunderstood. The report, entitled “Being Misunderstood”, is based on the largest survey to date on the topic of PDA (Pathological Demand Avoidance, a profile on the autism spectrum). The PDA Society hopes that its key findings will be a wake-up call to all those supporting and providing services to the autistic community; calls for local leaders to adopt a position statement on the PDA profile; and for practitioners to ensure that ‘needs-based and outcomes-focused’ becomes the norm and not the exception for this group. The PDA Society survey was conducted online for two weeks in March 2018 and was completed by 1,445 parents, professionals, PDA adults and their partners/family. The report makes clear that lack of acceptance and understanding of the PDA profile is the biggest barrier to accessing support. For outcomes to improve, professionals need to know: 1) that they can speak openly about this group of autistic people using unambiguous terminology and 2) most importantly, promote appropriate strategies. For this to happen, local leaders of services for autistic people must frame the way this profile can be managed – this is likely to be best achieved through publication of a position statement for professionals and service users along with resources for staff development. The report concludes with detailed recommendations for improved support across all sectors Read the results and download the report Find out how you can help

Q: PDA Self Report Assessment Tool for Adults by Dr Vincent Egan

There is a lack of research on the nature of Pathological Demand Avoidance syndrome in adults, and therefore there is no treatment pathway available to support people. This work is very much needed to help those who are struggling with the condition, their families, and professionals, for example those working in mental health services. The first step was to develop a tool to enable the condition, in particular the extreme demand avoidance trait, to be identified. The 'extreme demand avoidance questionnaire' EDAq (O'nions et al, 2014) was amended to be used as a Self Report Assessment (SRA) tool and then tested. Almost 350 adults with either suspected / diagnosed PDA or who were other 'non-neurotypicals' took part in the study, and the SRA was found to work well. A second study involved almost 200 people and the results of both are due to be published in a few months. Within the research group, most were either employed or studying. It was found that those with PDA struggled particularly with emotional stability and their social skills, though they had fewer problems with communication than others with Autism Spectrum Disorders. The work has shown the need for further work on helpful therapies for adults and it is suggested that positive emotional self-management to make coping and self-soothing more effective will be important. Dr Egan presented his findings at the National Autistic Society's conference on PDA in October 2016. Read more about research into PDA here .