There is a great deal of speculation and confusion surrounding Pathological Demand Avoidance (PDA), ranging from its validity as an independent diagnosis to its characteristics and its cause.
This is due to the fact that as a label/diagnosis, it is still in its infancy, and there has been very little research into it.
My aim is to help you to understand PDA (as far as the current findings are), what PDAers experience, and how you can help to support the PDAer in your life.
Going back to the beginning
PDA was first coined in 1980 by Elizabeth Newson, who was working in the Child Development Research Unit at the University of Nottingham at the time. Over the span of six years, she had identified twenty-one children who displayed many autistic traits but were not diagnosed as autistic due to the fact that other characteristics were different from what autistics at the time were experiencing (good eye contact, imaginative play, good level of social interaction and capabilities).
These twenty-one children all had the same characteristics, so she concluded that it was a label in its own right under the diagnostic umbrella Pervasive Development Disorder (the same category as autism spectrum disorder) but was not autism itself, even though it shared many similar traits.
Below is a table that Elizabeth Newson created in 2003, to show the key characteristics of PDA and how they differ from those of autism and Asperger’s syndrome (as this was still a diagnosis in its own right at the time). Table can be viewed in the original source by clicking here.
Table 1: Defining criteria for diagnosis of pathological demand avoidance syndrome (with descriptive notes and comparison with autism)
Editor’s note: This table uses clinical/medical language from 2003. The information is presented for historical and educational reference only and is not reflective of The Aspergian’s perspective, opinions, or language used to describe autistic/PDA children.
|PDA children||Autistic/Asperger’s children|
|(1) Passive early history in first year: Often doesn’t reach, drops toys, “just watches”; often delayed milestones. As more is expected, child becomes “actively passive”, i.e. strongly objects to normal demands, resists. A few actively resist from the start, everything is on own terms. Parents tend to adapt so completely that they are unprepared for the extent of failure once child is subjected to ordinary group demands of nursery or school; they realise child needs “velvet gloves” but don’t perceive this as abnormal. Professionals too see child as puzzling but normal at first.||Seems more abnormal much earlier; lack of social response and lack of empathy alert parents, together with poor body language and stereotypic behaviour|
|(2) Continues to resist and avoid ordinary demands of life: Seems to feel under intolerable pressure from normal expectations; devotes self to actively avoiding these. Demand avoidance may seem the greatest social and cognitive skill, and most obsessional preoccupation. As language develops, strategies of avoidance are essentially socially manipulative, often adapted to adult involved; they may include: ||Can be reluctant, but ignores or shuts out pressure in a non-social way, without acknowledging others’ needs. Has very few conscious strategies for avoidance. Doesn’t adapt particular strategy for particular person. Doesn’t have enough empathy to make excuses, and usually not enough empathic language either. Direct, not devious.|
|(3) Surface sociability, but apparent lack of sense of social identity, pride, or shame: At first sight normally sociable with enough empathy to manipulate adults as shown above; but ambiguous and without depth. No negotiation with other children, doesn’t identify with children as a category: the question “Does she know she’s a child?” makes sense to parents, who recognise this as a major problem. Wants other children to admire, but usually shocks them by complete lack of boundaries. No sense of responsibility, not concerned with what is “fitting to her age” (might pick fight with toddler). Despite social awareness, behaviour is uninhibited, e.g. unprovoked aggression, extreme giggling/inappropriate laughter, or kicking/screaming in shop or classroom. Prefers adults but doesn’t recognise their status. Seems very naughty, but parents say “not naughty but confused” and “it’s not that she can’t or won’t, but she can’t help won’t” — parents at a loss, as are others. Praise, reward, reproof, and punishment ineffective; behavioural approaches fail.||Because of lack of social empathy, autistic children (even Asperger’s children) don’t purposefully manipulate, though people around them may feel manipulated by the situation or by fate. They give no impression of sociability, except with questions or statements about their preoccupying interests from verbal children. They may become more sociable in time, but seldom develop real (natural) social empathy.|
|(4) Lability of mood, impulsive, led by need to control: Switches from cuddling to thumping for no obvious reason; or both at once (“I hate you” while hugging, nipping while handholding). Very impetuous, has to follow impulse. Switching of mood may be response to perceived pressure; goes “over the top” in protest or in fear reaction, or even in affection; emotions may seem like an “act”. Activity must be on child’s terms; can change mind in an instant if suspects someone else is exerting control. May apologise but reoffend at once, or totally deny the obvious. Teachers need great variety of strategies, not rule based: novelty helps.||Autistic children are seldom impulsive; they work to (their own) rules, and parents learn what will upset them. They do not put on an act for someone else until very much older, if then. Rules, routine and predictability help.|
|(5) Comfortable in role play and pretending: Some appear to lose touch with reality. May take over second-hand roles as a convenient “way of being”, i.e. coping strategy. Many behave to other children like the teacher (thus seem bossy); may mimic and extend styles to suit mood, or to control events or people. Parents often confused about “who he really is”. May take charge of assessment in role of psychologist, or using puppets, which helps cooperation; may adopt style of baby, or of video character. Role play of “good person” may help in school, but may divert attention from underachievement. Enjoys dolls/toy animals/domestic play. Copes with normal conventions of shared pretending. Indirect instruction helps.||Inflexibility, lack of symbolic and imaginative play and lack of empathy all make it very difficult for autistic children to pretend (other than by arranging miniature objects), or to take roles more fully than by simple echoing—though Asperger’s children may learn “scripted” roles, with difficulty and without fluency. Indirectness confuses.|
|(6) Language delay, seems result of passivity: Good degree of catch-up, often sudden. Pragmatics not deeply disordered, good eye contact (sometimes over strong); social timing fair except when interrupted by avoidance; facial expression usually normal or over vivacious. However, speech content usually odd or bizarre, even discounting demand-avoidant speech. Social mimicry more common than video mimicry; brief echoing in some. Repetitive questions used for distraction, but may signal panic.||Language is both delayed and deviant, non-existent in many. Even Asperger’s children show very disordered pragmatics of language, poor eye contact and social timing, little facial expression or gesture.|
|(7) Obsessive behaviour: Much or most of the behaviour described is carried out in an obsessive way, especially demand avoidance: as a result, most children show very low level achievement in school because motivation to avoid demands is so sustained, and because the child knows no boundaries to avoidance. Other obsessions tend to be social, i.e. to do with people and their characteristics; some obsessionally blame or harass people they don’t like, or are overpowering in their liking for certain people; children may target other individual children.||Autistic children are also obsessive, but less so with social topics. They are not obsessively focused on demand avoidance, and do not use obsessions for manipulative purposes. Order, arrangements and perceptual fascinations.|
|(8) Neurological involvement: Soft neurological signs are seen in the form of clumsiness and physical awkwardness; crawling late or absent in more than half. Some have absences, fits, episodic dyscontrol, or generalised excitability. Not enough hard evidence as yet.||Some comparable involvement in autism; less in terms of crawling and episodic dyscontrol.|
In 2013, Elizabeth O’ Nions et al. ran a study to examine the behavioural profile of PDA children in comparison to children with autism and also children with conduct problems and callous or unemotional traits. She chose these three groups because of the fact that PDA children appear to have traits from both conditions.
The study involved 25 children diagnosed with PDA (using Newson’s criteria as above), 39 children diagnosed with ASD, and 28 children diagnosed with conduct problems and callous-unemotional traits. The data for the study was gathered through three different questionnaires: Strengths and Difficulties questionnaire, Childhood Autism Spectrum Test, and the Anti-Social Process Screening Device.
The results of the study found that although PDA does have characteristics from both ASD and conduct problems and callous-unemotional traits, the standard techniques that work for accommodating these groups do not work with those with PDA. The study also found that there are characteristics within PDA that do not fit into either of these groups.
While these findings could indicate that the PDA group has ASD with co-morbid conduct problems, plus additional extreme emotional symptoms, this does not fully explain or characterize the main difficulties in PDA. 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. While children with conduct problems may resist complying in order to persue 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. (O’ Nions et al. 2013).
Another possible comparison they draw is that the motivation behind the behaviours (between PDA and callous-unemotional traits and conduct problems) is markedly different. With conduct problems it is more about their want, will, and personal gain, whereas with PDA it is a pathological need to be in control, regardless of whether or not it means that they will get/do what they want. In fact, those with PDA will often act against their own interest and desires in order to maintain control.
Bringing us back to the current day: Dr Judy Easton (consultant clinical psychologist) is the latest to delve into the diagnostic criteria and profile of PDA, and has worked with the PDA Society.
She has amended Newson’s original criteria to remove the language delay (with fast catch-up) and the neurological involvement, and has included sensory difficulties, with a focus on interoception (the ability to recognize internal messages such as hunger, thirst and needing to use the toilet), a commonly-reported issue with PDA children.
One common aspect of ASD is often a cause of confusion about PDA, and that is demand avoidance.
The majority of autistics suffer from demand avoidance to an extent, this avoidance increasing with the level of stress that they are experiencing.
However, those with PDA do not simply have extreme demand avoidance which is affected by stress levels. Their demand avoidance applies to every single instance where they perceive a demand; this could be getting up in the morning, eating, drinking, toileting, going to see a movie that they have been really looking forward to seeing, playing with a new toy, etc.
It is uncontrollable and all encompassing.
In recent months, PDA has become a buzz word that is thrown around when someone is explaining their demand avoidance. Other than representing their own struggles incorrectly, doing this also undermines what those with PDA actually suffer and experience in daily life, as well as the struggles that their families endure.
PDAers are masters of demand avoidance in that they are skilled at making excuses or using distraction techniques to avoid any demands put on them.
These techniques can include procrastination, negotiation, hurting themselves so they are unable to complete the request, withdrawing into a fantasy world, or physically attacking the person making the request or demand.
Violence is often used when their anxiety levels are high and they don’t think that any other form of avoidance will work, or their emotions and anxiety peak and they have an explosive meltdown.
Another difference here between autistics and PDAers is that autistics don’t use social techniques to avoid demands in the same way that PDAers do. Autistics often either ignore, walk away, or withdraw from the conversation or situation.
PDAers, like autistics, suffer from a high level of anxiety, although autistic anxiety is born of a fear of the unknown, lack of routine, or things not going as planned (generally speaking), whereas a PDAer’s anxiety is born of an over-powering need for control. This need for control dictates every aspect of their life and that of their family.
Another difference between autistics and those with PDA is that PDAers can appear to have far greater social understanding and communication skills compared to their autistic counterparts, though unfortunately it is often the case that their level of understanding is far lower than what it appears to be.
PDAers often learn from a young age to watch and mimic their peers in order to fit in or be accepted. They also tend to learn a number of social niceties or polite responses in order to appear more socially fluent than they truly are.
I have heard the phrase that PDAers have a super mask (like a superior form of autistic masking) with which they can appear far more at-ease and in-control of social situations that would make their autistic peers incredibly uncomfortable.
This “super mask” is used as a control tactic, a way to lower their anxiety and make them able to cope in that situation by acting and appearing like they fit in with those around them even though inside they are drastically different.
Unfortunately, this can sometimes come across as controlling or dominating, especially if their anxiety levels are high, as they desperately try to gain control of a situation that is beyond their control.
When I was young, every time any boy asked me out, I automatically said no even if I really liked him and wanted to go out with him. After I turned him down, I would think about it for a few days, and if it was someone who I really liked, I’d go back to him and ask him out, all to be in control of that situation. At that point in time, that was a subconscious instinct on my part, but looking back, I can see how that was an avoidance tactic I used a lot in my youth.
Like those with ADHD, PDAers tend to be quite impulsive in their decisions and actions, unlike other autistics who much prefer a more rigid and predictable routine in place.
An interesting theory that I have recently heard is that PDA could be a combination of ASD, ADHD, and SPD (Sensory Processing Disorder).
This would cover the autistic aspects of PDA, the impulsivity and lability of mood of ADHD, and the sensory difficulties of SPD, although I still feel that these three conditions do not entirely cover all of the characteristics of PDA.
One thing that has been reported by many families of PDA is that the techniques that work with autistic children are the opposite of what works with PDA children.
Most notably, autistic children tend to respond well to and need a rigid routine and clear instructions, whereas PDA children respond best to having no routine at all and a very child-led approach with zero demands.
Most PDA children do not cope well with schools, as they are unable to comply with the rules and regulations that the school applies, making the PDA children lash out in an avoidance attempt, or they could hold it in until they return to the safety of their home, and then they unleash all of their emotions in one go.
As it stands, a great deal more research and study needs to go into PDA to determine whether it is an autistic profile, a diagnosis in its own right away from autism, or if it is autism with a number of co-morbid conditions.
We at The Aspergian are still in talks with the PDA Society, autistic advocates, PDA advocates, and other professionals relevant to the discussion about PDA and its relationship with autism.
All parties who believe that PDA exists are in agreement that it is neurodivergence, but the primary source of debate revolves around whether or not PDA is a profile of autism or if it’s a separate condition that can– but does not always– co-occur with autism.
Another source of contention is whether or not PDA is actually pathological, or if it’s a natural consequence of sensory and social overwhelm or the fear of overwhelm that prompts demand avoidance. In behavioral science, something is pathological when it substantially hinders the quality of life of an individual and/or others in an individual’s life.
We will keep you up-to-date on PDA information as we continue to discuss relevant issues and interact with the community, researchers, organizations, and advocates.