Why Pathological Demand Avoidance Syndrome (PDA) is not the same as, or another way of, describing Oppositional Defiant Disorder (ODD)
PDA was proposed by Professor Elizabeth Newson to be seen as a definitive and separate sub group within the category of ‘Pervasive Developmental Disorders (PDD)’ (Newson et al 2003). Elizabeth Newson et al (2003) Pathological Demand Avoidance Syndrome: a necessary distinction within the pervasive developmental disorders; Archives of Diseases in Childhood. Since the publication of this paper terminology has changed and the term PDD has become synonymous with the term ASD. The importance of this is that PDA is now best understood as being one of or part of the Autism Spectrum Conditions (P Christie 2015).
PDA is not currently thought of, by the experts in this field, to be another name for ODD or to be another name to give to an individual with ASC and co morbid ODD. It may be that some individuals do indeed present with ASC and co morbid ODD however this may not always be the case. A child with PDA will have a unique profile that may not be accurately described or indeed helped by the mix and match of these two labels.
“It is inevitably the case that when conditions are defined by what are essentially lists of behavioural features there will be interconnections and overlaps. Aspects of both of these conditions can present in a similar way to those features that make up the profile of PDA. There is also the possibility of the co-existence or ‘co-morbidity’ of different conditions and where this is the case the presentation is especially complex.
ODD, Oppositional Defiant Disorder, itself often exists alongside ADHD, and is characterised by persistent ‘negative, hostile and defiant behaviour’ towards authority. There are obvious similarities here with the demand avoidant behaviour of children with PDA. PDA, though, is made up of more than this, the avoidance and need to control is rooted in anxiety and alongside genuine difficulties in social understanding, which is why it is seen as part of the autism spectrum. This isn’t the case with descriptions of ODD. A small project, supervised by Elizabeth Newson, compared a group of children with ODD and those with a diagnosis of PDA and found that the children with PDA used a much wider range of avoidance strategies, including a degree of social manipulation. The children described as having ODD tended to refuse and be oppositional but not use the range of other strategies. Many children with ODD and their families are said to be helped by positive parenting courses, which is less often the case with children with PDA.” (P Christie 2015 ‘My Daughter is Not Naughty’ p.g 310 – 311)
Recent research has concluded that there are indeed behavioural overlaps between individuals with PDA, typical ASD and ODD but that the PDA group had unique features that were not shared by either of the other two groups and that the PDA group were also atypical of the behavioural profile typically seen in individuals with ASD or conduct problems.
The findings of this research have being summarised in the following information cards and the source for that information is referenced in the cards.
PDF Version please click here ODDvPDA1
PDF version please click here ASDvPDA1
Further discussion From the Published Research that was the Source for my Information Cards
While these findings could indicate that the PDA group has an ASD with co-morbid conduct problems, plus additional extreme emotional symptoms, this does not fully accommodate the main difficulties in PDA as outlined in the ‘Introduction’ (of that research paper). Specifically, poor social cognition associated with autism appears inconsistent with instrumental use of social manipulation. Impoverished imagination in autism is inconsistent with role play and excessive fantasy engagement in PDA (e.g. taking on the role of a teacher when interacting with peers and telling tall tales). While children with conduct problems may resist complying in order to pursue their own interests – for example, to avoid a task they dislike – obsessive avoidance of even simple requests, regardless of the personal consequences, goes beyond this. PDA may represent a subset of those who tick boxes for ASD, conduct problems and emotional symptoms, with these additional very characteristic problematic features. However, current educational or therapeutic provision for ASD children with conduct problems does not seem to suit those described as having PDA. The term may well reflect disturbances in more circumscribed socio-cognitive pathways associated with social reciprocity or processing of incoming social cues. These hypotheses must be explored using cognitive-level paradigms. Elucidating the neurocognitive basis of this profile, and possible interventions, remain key issues for future research. O’Nions E, Viding E, Greven CU, Ronald A & Happé F (2013) Pathological Demand Avoidance (PDA): exploring the behavioural profile; Autism: The International Journal of Research and Practice.
As a result of recent research there has also been the development of the Extreme Demand Avoidance Questionnaire EDA. O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F. (2013) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): Preliminary observations on a trait measure for Pathological Demand Avoidance; Journal of Child Psychology and Psychiatry.
The EDA-Q was found to successfully differentiate children reported by parents to have been identiﬁed as having PDA from comparison groups reported to have other diagnoses or behavioural difﬁculties. It provides a potentially useful means to quantify PDA traits, to assist in identiﬁcation and research into this behavioural proﬁle.
• Pathological Demand Avoidance (PDA) is a relatively new term that is increasingly being used as a clinical description in the United Kingdom. Children with PDA display an obsessive need to avoid everyday demands, and try to dominate interactions with others, often using socially shocking behaviour with apparently little sense of what is appropriate for their age.
• The present study describes the development and preliminary validation of a trait measure for PDA: the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q). Scores on this measure successfully differentiated individuals reported to have PDA from comparison groups reported to have other diagnoses or behavioural difﬁculties, including individuals with ASD, disruptive behaviour, or both. The sensitivity and speciﬁcity of the measure to identify PDA was good.
• The 26-item EDA-Q provides a potentially useful means to quantify PDA traits. Scores should be considered an indicator of the risk that a child exhibits the PDA proﬁle, rather than a diagnostic indicator. Further studies are needed to validate the measure in a population for whom information from clinical assessments is available.
Extreme Demand Avoidance Questionnaire (EDA-Q): 26-item ﬁnal version
Items 1–26 (apart from 14 and 20) are scored as follows: Not true = 0, Some-what true = 1, Mostly true = 2, Very true = 3. Items 14 and 20 are reverse scored: Not true = 3, Some-what true = 2, Mostly true = 1, Very true = 0. Total possible score for items 1–26 = 78.
1 Obsessively resists and avoids ordinary demands and requests
2 Complains about illness or physical incapacity when avoiding a request or demand
3 Is driven by the need to be in charge
4 Finds everyday pressures (e.g. having to go on a school trip/visit dentist) intolerably stressful
5 Tells other children how they should behave, but does not feel these rules apply to him/herself
6 Mimics adult mannerisms and styles (e.g. uses phrases adopted from teacher/parent to tell other children off)
7 Has difﬁculty complying with demands unless they are carefully presented
8 Takes on roles or characters (from TV/real life) and ‘acts them out’
9 Shows little shame or embarrassment (e.g. might throw a tantrum in public and not be embarrassed)
10 Invents fantasy worlds or games and acts them out
11 Good at getting round others and making them do as s/he wants
12 Seems unaware of the differences between him/herself and authority ﬁgures (e.g. parents, teachers, police)
13 If pressurised to do something, s/he may have a ‘meltdown’ (e.g. scream, tantrum, hit or kick)
14 Likes to be told s/he has done a good job
15 Mood changes very rapidly (e.g. switches from affectionate to angry in an instant)
16 Knows what to do or say to upset speciﬁc people
17 Blames or targets a particular person
18 Denies behaviour s/he has committed, even when caught red handed
19 Seems as if s/he is distracted ‘from within’
20 Makes an effort to maintain his/her reputation with peers
21 Uses outrageous or shocking behaviour to get out of doing something
22 Has bouts of extreme emotional responses to small events (e.g. crying/giggling, becoming furious)
23 Social interaction has to be on his or her own terms
24 Prefers to interact with others in an adopted role, or communicate through props/toys
25 Attempts to negotiate better terms with adults
26 S/he was passive and difﬁcult to engage as an infant
For children aged 5 to 11 a score of 50 and over…
For children aged 12 to 17 a score of 45 and over…
…identifies individuals with an elevated risk of having a profile consistent with PDA.
‘The EDA-Q should not be considered a diagnostic test. For diagnosis, a thorough assessment by an experienced professional is required.’ (PDA Society 2014)
PDA is a very real condition that should be seen as a definitive and separate subgroup with the autism spectrum conditions. Hopefully with continuing research, within this field, PDA will eventually and officially enter the diagnostic manuals. However, in the interim, there is nothing to stop many clinicians from diagnosing this condition based on their own clinical experience and expertise.
Being in a diagnostic manual is not a pre-exquisite required for diagnosis and should not prohibit a clinician from diagnosing PDA as stated by Dr Judith Gould at the Cardiff PDA Conference 2014. Being in a diagnostic manual simply means that finally research has finally caught up, but this can take decades. In the meantime many individuals and families are left without the correct diagnosis or support.
Although Asperger’s has being removed from the DSMV it isn’t that the condition has been deleted but simply that the terminology of individuals presenting with an Asperger’s profile has been changed. However in 1970 this condition or even this profile may not have even existed in diagnostic manuals, does this mean that the condition didn’t exist or merely that it was waiting for diagnostic manuals to catch up with what Hans Asperger’s had already discovered? This is where we are now currently standing with PDA, we are simply waiting for diagnostic manuals and research to catch up with what Professor Elizabeth Newson identified some thirty odd years ago.
The importance of the correct diagnosis is to better understand the child and to be signposted to the correct support and strategies (P Christie). Strategies that are often successful for individuals with ODD do not tend to be successful for individuals with PDA and can, infact, often intensify the issues.
My daughter is not willfully naughty or defiant and describes the need to avoid demands as instinct, something that she does not consciously decide to do but something that she is compelled to do. When she is met with a demand, even a pleasurable one, her stomach goes into somersaults and in order to stop the rising anxiety she simply has to try to avoid the demand. Giving her a countdown or a routine of the day’s activities makes her even worse as does direct eye to eye contract and firm, simple and direct demands. This may vary from child to child but these strategies do not work with her but PDA strategies do!
Published peer reviewed papers on PDA http://www.pdasociety.org.uk/resources/published-articles
For more information about PDA please http://www.pdaresource.com/index.html and http://www.pdasociety.org.uk/