To mark PDA Action Day 2018, the PDA Society has published a report which reveals how people with Pathological Demand Avoidance (PDA) are at especially high-risk of being misunderstood. The report, Being Misunderstood, is based on the largest survey to-date on the topic of PDA and is of interest to those supporting people with PDA.
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, adults with PDA and their partners/family members. Key findings include:
- 70% aren’t in school or regularly struggle to attend.
- 70% have found a lack of understanding/acceptance a barrier to getting support.
- 78% have difficulties with daily tasks.
- 49% of young people have a diagnosis that includes mention of a PDA profile.
- Conventional autism spectrum disorder approaches hinder rather than help.
‘These stark statistics make it clear that this complex and unusual profile of autism is leading to individuals and their families being completely misunderstood and that this is leading to extremely poor outcomes,’ comments Sally Russell, OBE, who compiled the report. ‘And yet they also demonstrate that explanatory terminology, which includes the demand avoidant profile, is being widely used in some parts of the country.’
Supporting people with PDA
Assessments conducted in accordance with National Institute for Health and Care Excellence guidelines ought to pick up on the demand avoidant profile and where it is identified, understanding of strategies can follow. But even then, much more support is needed for local services to become sufficiently familiar with useful interventions, as services were found not only to be ineffectual but often compounding problems.
‘It is completely unacceptable that 70% of young people are struggling to access education – this is school refusal at much higher levels than you would expect to see in the ASD population as a whole,’ continues Sally. ‘And yet the PDA Society has also found examples of best practice which show what can be achieved once the right approach is implemented.’
Parenting a child with PDA
‘The PDA profile also turns all parenting norms upside down,’ says Sally. ‘Usual good parenting techniques such as use of praise, boundaries and “rewards and consequences” fail; whereas negotiation, collaboration, minimal ground rules and careful use of language helps. Without an understanding of the profile and the approaches which work, one can see why professionals may sometimes look at a family and think that things may be the parent’s fault.’
Barriers to accessing PDA support
The report makes clear that lack of acceptance and understanding of the PDA profile is the biggest barrier to accessing PDA support. For outcomes to improve, professionals need to know:
- That they can speak openly about this group of autistic people using unambiguous terminology, and
- 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.
A further snap poll conducted by the PDA Society, asking how people first found out about PDA, underscores the need for greater training as only 20% of 300+ respondents said that they had first heard about PDA from a medical or education professional with the vast majority learning about it by chance or from a fellow parent/PDAer.
The PDA Society was first established in 1997 by parents of children with Pathological Demand Avoidance (PDA), a profile on the autism spectrum. The PDA Society became a registered charity in January 2016. It provides information, support and training for parents, carers, teachers and individuals with PDA.