Pathological demand avoidance (PDA) or extreme demand avoidance (EDA) is a proposed disorder and sub-type of autism spectrum disorder, defined by characteristics such as a greater-than-typical refusal to comply with requests or expectations and extreme efforts to avoid the social demand.^[1] Any expectation, even familiar, routine activities for highly desired activities, such as getting ready to leave home to visit a playground, can trigger avoidant behavior, and if the demand cannot be avoided, a panic attack or a meltdown may ensue.^[2]

Although PDA has its own traits that are separate from autism, people with PDA generally meet the diagnostic criteria by having significant difficulties in social interaction and communication.^[1] Alternatively, they may instead be diagnosed with ODD.^[1] Those who propose that PDA should be a separate diagnosis from classic autism spectrum disorders, observed that, compared to children with classic autism, those with PDA:

• are more sociable
• have better social skills and social understanding
• use apparently socially manipulative and shocking behaviour^[3][4]
• are more interested in people than objects
• are more comfortable with pretend play, and
• are more imaginative

The term was proposed in 1980 by the UK child psychologist Elizabeth Ann Newson.^[4][5] PDA is observed in adults as well.^[6]

Recognition

PDA is not included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the International Classification of Diseases (ICD). To be recognized, a sufficient amount of consensus and clinical history needs to be present, and as a newly proposed condition, PDA had not met the standard of evidence required at the time of recent revisions. However, DSM-5 also moved from sub-type classification to the use of autistic spectrum disorder, which allows for different behavioural profiles to be described.

In 2011, the National Institute for Health and Care Excellence (NICE) said that PDA has been proposed as part of the autism spectrum but did not include further discussion within the guideline.^[1] NICE guidance also expects an ‘ASD’ diagnosis be accompanied by a diagnostic assessment, providing a profile of key strengths and difficulties. Demand avoidance is listed as a ‘sign or symptom of ASD’ (Appendix 3).^[1]

Christopher Gillberg wrote in 2014 that “Experienced clinicians throughout child psychiatry, child neurology and paediatrics testify to its existence and the very major problems encountered when it comes to intervention and treatment.”^[7]

Signs

Not all demands involve being ordered to do a task. In PDA, silently offering something can be perceived as a demand.

The primary sign is an atypical resistance to normal, everyday social demands. For the purposes of PDA, a demand is social interaction or similar opportunity to cooperate, very broadly understood.^[2] It encompasses things that seem like demands, such as being told to do homework now, but it also includes everything from someone silently offering to shake hands to knowing that catching the bus requires leaving home in time to walk to the bus stop.^[2] All children are uncooperative from time to time, and this may be amplified during some developmental phases (e.g., the so-called "terrible twos"). However, children with PDA display a resistance to everyday demands that goes dramatically beyond typical behavior, until it interferes with their everyday lives, and their resistance is obsessive and extreme.^[3] The resistance to demands even applies to demands that they make on themselves, such as preparing for a self-chosen favorite activity.^[2]

When people with PDA perceive demands, they may use a variety of methods to avoid it. For example, they may try to ignore it or distract the person with a different subject.^[3] If the demand persists, they may strategically escalate to intentionally shocking behaviour, such as [in children] deliberately kicking someone to get out of doing something; shame or remorse for such inappropriate or infantile behaviour is often not communicated.^[2][8][3]

Additional associated features including:

• an appearance of social skills that are superficially acceptable but which have odd features, such as [in children] a belief that the normal rules apply only to other people, or that they have the same authority as adults or people in positions of authority;^[3]
• emotional lability, such as being affectionate one moment and angry the next, and impulsive and controlling behaviors;^[3]
• [in children] being comfortable with role-playing and pretending to be other characters.^[3] This may be used when trying to avoid a demand; and
• "soft" signs of neurological divergence, such as language delay, obsessive behaviour, delayed milestones, or clumsiness.^[3]

Diagnosis

As of 2014 there are no officially recognised diagnostic criteria.^[9] Observations in children with PDA that were identified as common features^[3] that potential possible diagnostic criteria could be based on include:

• Passive early history in the first year, avoiding ordinary demands and missing milestones
• Continuing to avoid demands, with panic attacks if demands are escalated
• Surface sociability, but apparent lack of sense of social identity
• Lability of mood and impulsivity
• Comfortable in role play and pretending
• Language delay, seemingly the result of passivity, often caught up quickly
• Obsessive behaviour
• Use of apparently socially manipulative and shocking behaviour^[3]
• Neurological signs (awkwardness, similar to autism spectrum disorders^[10])

The 26-item Extreme Demand Avoidance Questionnaire (EDA-Q) was designed for research, but has been used as an aid to diagnosis in school-age children.^[2] In 2021, this was reduced to an 8-item questionnaire (EDA-8).^[11] The shorter version, which has less bias in terms of gender and academic skills, retains questions from the original version such as whether the child will use "outrageous or shocking behaviour" to avoid a demand, whether the child's mood changes instantly, and whether the child is unaware or indifferent to social hierarchies and the role of authority figures.^[11] The original questionnaire has been lightly adapted to be more appropriate for adults (EDA-QA).^[8]

Many of the studies published on PDA have methodological limitations, which restricts conclusions that can be drawn about patterns of behaviours characteristic of PDA. It is unknown how much demand-avoidant behaviours vary between children and how much they change as they grow up.^[12]

Causes of demand avoidance

The underlying cause of demand avoidance in autistic children is said to be a high level of anxiety, usually from expectations of demands being placed on children, which can lead to a feeling of not being in control of a situation. Consequently, an additional diagnosis of generalised anxiety disorder or another anxiety disorder may be made instead of PDA.^[13] About 40% of autistic people suffer from an anxiety disorder.^[14]

Children with PDA feel threatened when they are not in control of their environment and their actions, which triggers the fight, flight or freeze response.^[15]

Naming controversy

Pathological demand avoidance has been criticized as a name for various reasons, including the negative connotations some confronted with the word pathological might have.^[16] For example, social psychologists Damian Milton and Devon Price have suggested the behaviour should not be considered pathological. They view PDA as an example of individual autonomy or self-advocacy.^[17] Alternative names like Rational Demand Avoidance (RDA)^[18] or Pervasive Drive for Autonomy^[19][20] have been proposed and used.

History

Newson first investigated PDA as a specific syndrome in the 1980s when certain children referred to the Child Development Clinic at the University of Nottingham appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits, but were not typical in their presentation like those with classical autism or Asperger's syndrome. They had often been labelled as atypical autism or Pervasive Development Disorder–Not Otherwise Specified (PDD-NOS). Both of these terms were felt by parents to be unhelpful.

When Newson was made professor of developmental psychology at the University of Nottingham in 1994, she dedicated her inaugural lecture to talking about pathological demand avoidance syndrome.^[21]

In 1997, the PDA Society was established in the UK by parents of children with a PDA profile of autism. It became a registered charity in January 2016.^[22]

In July 2003, Newson published in Archives of Disease in Childhood for PDA to be recognised as a separate syndrome within the pervasive developmental disorders.^[4]

In 2020, an incorporated association was established in Australia. Pathological Demand Avoidance Australia, Inc. became a registered charity early 2021.^[23]

References

Further reading