[Posted on 14 February, 2018 by Christopher Gillberg]
Elizabeth Newson was a clinical psychologist who as early as almost 40 years ago described a condition that she called PDA (Pathological Demand Avoidance). She viewed it as a form of autism. There were many of us who argued that what this was a common symptom of autism, but certainly not something to be considered synonymous with an autism diagnosis. Later research has shown that PDA occurs relatively often in the entire ESSENCE domain and that it might be especially common among children (and young adults, perhaps even older) who meet criteria for autism (for example, EDA occurs in around every six children with autism according to a study we have performed in the Faroe Islands and in every twenty schoolchildren with epilepsy according to a study that Brian Neville, Colin Reilly and our group have carried out in England). Our own group and Francesca Happe, Elisabeth Nions and Judy Gould find it most reasonable to refer to the condition as Extreme Demand Avoidance or EDA.
Beyond extreme demand avoidance, another typical feature of the condition is a refusal to “cooperate”. These are children who say no to every single thing they don’t “feel like doing” and are unable to provide any reason whatsoever as to why they are saying no. There are often signs of this even during the child’s first year of life – they close their mouth, turn away their head, refuse to “interact”. Some children provide incomprehensible explanations as to why they “cannot” do this or that. Others are just silent and observe their surroundings (from the age of 2 to 15). Some fit the description of selective mutism, others match criteria for autism. Some are extremely negativistic and look angry or cross, others smile (which may even be perceived as a “superior” or arrogant smile). After puberty it might manifest as “computer addiction”, “loner behaviour”, maternal overdependence or the “hikikomori” phenomenon (a kind of hermit-like isolation and reclusiveness). Still others are perceived as extremely manipulative and as though they have usurped the role of adults, parents or guardians of those around them. Somewhere around half of all people affected control their families entirely – i.e. deciding all that will and will not be done – and, strangely enough, one might argue, sometimes the people around them simply acquiesce to all of the child’s strange demands or the child’s avoidance of demands from others. For example, they refuse to get up in the morning, refuse to brush their teeth, refuse to eat anything with a hint of yellow in it, refuse to be in a room where “it smells like cheese” (when cheese has been taken out of the refrigerator), and sometimes also refuses with the obvious intent of tormenting others, in order to see everyone’s sometimes desperate attempts to get the child to go along with what everyone else wants. Many insist on spending the day dressing up and playing different roles, and might even insist that they are in fact some fairy-tale character or actress. Some have learned to threaten others to behave in shocking ways (like for example making up humiliating stories about their parents that they can “reveal” in public situations) in order to secure promises that no demands whatsoever will be made of them.
There are no established, agreed-upon diagnostic criteria for PDA/EDA and the “diagnosis” is not included in DSM or ICD. There is also no consensus regarding whether the condition should be considered a subgroup of autism. I myself have met a number of children with “typical EDA behaviour” who certainly do not have autism. Personally, I think there are large conceptual similarities between EDA and ODD; they are behavioural variants that occur relatively commonly among children with other diagnosable ESSENCE (such as autism, ADHD and tic disorders).
Together with Francesca Happé, Judy Gould and Elisabeth Nions, we have developed an EDA questionnaire for parents and validated questions in the so-called DISCO interview (about autism and related conditions), making it easier for doctors and psychologists to “zero in on” and quickly recognise this set of problems and to give it a name (albeit not make it a “formal diagnosis”).
There is no established treatment method, but everyone involved (parents, siblings, grandparents, teachers, psychologists, doctors) must have a common approach and make reasonable, successively increasing demands of the child, whose dominance of those around them must be broken as early as possible. EDA, when it occurs in the ESSENCE group of children and adolescents, can be the most disruptive and severe of all the child’s (and indeed the entire family’s) problems.