Now for the science bit — an interview with

Liz O’Nions

Liz O’Nions is a post-doctoral researcher at University College London working for the Division of Psychology and Language Science’s Developmental Risk and Resilience Unit. Her research into PDA includes the development of the Extreme Demand Avoidance questionnaire (EDA-Q), which is now being used as an assessment tool by some front-line clinicians, and which featured in last week’s episode of Channel 4’s Born Naughty? documentary, as part of the means of assessment for a young boy on the programme eventually diagnosed with PDA. Crucially, over the last few years her research has also helped to expand the volume of peer-reviewed articles about PDA published in academic journals.

Pathological Demand Avoidance syndrome (PDA) was first detailed by Elizabeth Newson in the 1980s to describe children who displayed characteristics of autism, but who were also obsessively resistant to ordinary demands and requests. Newson noted these children were surprisingly adept at using socially manipulative strategies, such as distraction or charm, to get round people. Though Newson described this group as ‘superficially sociable’, they lacked pride, embarrassment or a sense of responsibility to others. Many were also said to identify themselves as an adult, and were unable to negotiate with others their own age. Extreme changes in mood, such as sudden changes from calm to aggressive behaviour were also noted. Some of the children were also described as being comfortable in role-play and would get lost in role as if they had “become” that persona.

As part of my work on a wider feature on PDA and women and girls on the autism spectrum, Liz was kind enough to answer some questions about her work. Other interviews conducted as part of my research can be found here, here and here.

What differentiates PDA from conduct disorders such as oppositional defiant disorder (ODD), and why is it important that the distinction is made?

The description of oppositional defiant disorder (ODD) included in diagnostic manuals covers many of the behaviours that are described in PDA — non-compliance being a very central characteristic. However, descriptions of PDA include additional striking features — in particular, significant social impairments and outrageous or embarrassing behaviour even in front of peers (e.g., removing clothes or urinating on the floor). In addition, the obsessive quality of resistance to everyday requests is not described in ODD.

In our 2013 study, we found that a group of 25 children (mean age 11.7 years) reported to have been clinically identified as having PDA did exhibit difficult behaviours and conduct problems at similar levels to a separate group of children with high levels of conduct problems. However, they scored significantly higher than the conduct problem group for peer problems, autistic traits and anxiety.

Whilst children with ODD or ‘conduct problems’ are often treated with traditional behavioural management approaches that promote consequences, or reward-based systems (e.g. the ‘Let’s Get Smart’ programme), Newson argued for an indirect approach for those with PDA. This centred on making demands seem less demanding (e.g., giving choices, de-personalising demands).

Do you consider those with PDA autistic?

In the study mentioned above we found that the children reported to have been clinically identified as having PDA did for the most part exhibit high levels of autistic traits. Eighteen out of 25 met the ‘high risk’ cut-off on the Childhood Autism Spectrum Test — a parent report questionnaire measure of autistic traits. At a group level, the ASD participants showed very similar levels of impairment to those with PDA on the three sub-scales of the questionnaire — social impairments, communicative impairments and rigid and repetitive behaviours and interests.

More recent work using a sample of children and adults assessed for possible ASD using the Diagnostic Interview for Social and Communication Disorder (DISCO) has suggested that those who exhibited PDA features were similar to the rest of the sample in terms of the impairments associated with the autistic triad. However, it remains possible that some individuals who exhibit PDA features would not meet criteria for autism on assessments, and may not show all aspects of the triad. More studies are needed in a wider clinic-based sample beyond just individuals assessed for possible ASD to explore this question.

In terms of whether the root causes are the same as ASD — our theoretical viewpoint was that there could be some additional or different neuro-developmental impairment that leads to the PDA behaviours beyond those associated with ASD. However, as the studies I mentioned suggest, PDA features do occur alongside features of autism. More work needs to be done to examine whether, for example, obsessive resistance to complying with demands and needing to control interactions reflects cognitive rigidity. This could be of a similar nature to that of individuals on the spectrum who don’t exhibit PDA features, but with a different focus (e.g., rigidity with respect to their status in an interaction, rather than the locations of objects in a room or the order of activities).

This could explain why strategies that de-personalise demands (e.g., if a toy makes the demand instead of the adult, or an external object or rule requires something to happen) are said to improve compliance. There are, however, many possible ‘cognitive accounts’ of the behaviours that characterise PDA. A great deal more research is needed to address which may be most relevant, and how they could signpost appropriate management and intervention.

What do you see as the greatest challenges faced by those with PDA?

Although those who live and work with individuals with PDA would be better placed to provide this insight, from my limited experience of testing individuals with PDA features, it is clear that their extreme difficulty complying, and extreme outbursts if pressed to comply present a huge challenge. I have utmost admiration for parents and teachers who continuously adapt to support their needs.

About the EDA-Q

The EDA-Q was designed to allow us to measure PDA features based on parental reporting. The questions came from Elizabeth Newson’s descriptions, and also suggestions from clinicians with expertise in PDA and autism spectrum disorders. On the basis of our preliminary validation study data, we dropped items that were not good at telling PDA apart from our comparison groups, which included children with autism and children with behavioural problems.

The results of our preliminary validation study suggested that EDA-Q scores could be useful in seeing whether an individual is at risk of exhibiting PDA features. This measure could be used as a screening tool to see whether it might be useful to conduct a comprehensive clinical assessment examining features of PDA in depth.

Read my interview with PDA activist Julia Daunt, or learn more about PDA here, here and here. Or visit the PDA Society website. If you’d like to know more about what it’s like to live with PDA, Steph Curtis has 14 recent case studies on her blog.