Everyone experiences ‘demand avoidance’ from time to time – that is, resisting the idea of doing something that has been requested of you.However for those who experience Pathological Demand Avoidance, things can feel significantly more intense.
Pathological Demand Avoidance (PDA) refers to a specific profile within the Autism spectrum, where individuals exhibit a strong desire for independence and have an increased sensitivity towards demands that challenge their autonomy. Tasks as simple as putting on shoes, going to sleep, brushing one’s teeth or having breakfast can evoke significant emotional responses in individuals with PDA, making it challenging for caregivers and loved ones to comprehend. This article aims to delve into the concept of PDA, shedding light on its fundamental characteristics. Whether you are a caregiver, parent, or simply curious about Autism PDA, this article will hopefully provide valuable insights.
Pathological Demand Avoidance (PDA) is a concept utilised to depict a specific profile of Autism. Individuals with PDA may exhibit a fight, flight, or freeze reaction when confronted with demands that challenge their independence, leading to heightened emotional responses. It has distinct characteristics, primarily characterised by an intense inclination to avoid demands, even when the individual desires to fulfil them. The primary function of demand avoidance in PDA is often the person’s attempt to safeguard their sense of autonomy and control.
Familiarising oneself with the fundamental traits of PDA can enable caregivers and healthcare practitioners to respond with greater empathy and sensitivity, thereby playing a vital role in effectively assisting individuals with PDA.
Elizabeth Newson, a renowned psychology professor at the University of Nottingham in the United Kingdom, introduced the term in 1983 to define a syndrome characterised by an individual’s “resistance and avoidance of the everyday responsibilities, even when it is beneficial for them to comply”. Newson identified various behaviours associated with this syndrome, such as attempting to divert the attention of the person in authority who made the request, providing excuses, escaping into a world of fantasy, and evading meaningful conversations. In severe cases, these behaviours may escalate to the point of causing meltdowns or panic attacks. Newson observed that signs of this syndrome, known as PDA, typically emerge early in a person’s life.
Subsequently, she and additional medical professionals and scholars have revised the explanation to highlight the utilisation of social tactics by individuals with PDA in order to evade requests and conceal anxiety or underlying problems related to processing and communication. Newson and her peers have also delineated alternative approaches for managing children exhibiting PDA characteristics, distinct from the methods typically employed for Autistic children, despite the fact that children with PDA are usually considered to be Autistic.
Newson initially classified PDA as a pervasive developmental disorder, distinguishing it from what was then referred to as ‘classic Autism.’ She contended that it is a unique syndrome within the Autism spectrum, similar to “Asperger syndrome” (which has since been incorporated into ‘Autism Spectrum Disorder’ following the release of the DSM-5 in 2013).
In recent times, medical professionals and researchers have characterised PDA as merely a ‘profile’, which encompasses a range of behaviours that can be observed in numerous Autistic individuals. However, it is not considered a separate syndrome or diagnosis. The PDA Society, a nonprofit organisation based in the United Kingdom, defines PDA as “a profile within the Autism spectrum.” Similarly, the National Autistic Society in the U.K. acknowledges PDA as a profile that necessitates an initial Autism diagnosis.
At present, we don’t accurately know the full prevalence of PDA. This is due to the absence of a standardised assessment and the fact that demand avoidance is considered as a characteristic within an individual’s neurodevelopmental profile rather than a standalone diagnosable condition. The limited and often low-quality research available makes it difficult to draw any definitive conclusions.
It should be emphasised that when demand avoidance was initially discussed, certain behaviours observed were deemed atypical in individuals with Autism. Nevertheless, with the advancement of our comprehension of Autism as a spectrum, several of these behaviours are now recognised as more prevalent. Initially, it was believed that Autistic individuals were mostly incapable of utilising the creative and socially astute strategies mentioned as ‘Forms of resistance’ when demand avoidance was first described. However, our present understanding of the Autism spectrum acknowledges that numerous Autistic individuals are indeed capable of exhibiting these abilities.
The significance of this context cannot be overstated when attempting to comprehend the historical background and ongoing discourse surrounding the term Pathological Demand Avoidance. Initially introduced as a means to describe individuals who exhibit avoidance tendencies towards demands, coupled with a set of behaviours believed to be atypical in Autistic individuals, the concept of PDA necessitated the creation of a new label.
Due to the fact that the majority of research on demand avoidance has been conducted in an effort to validate PDA as a distinct profile or condition, it becomes challenging to distinguish between our understanding of demand avoidance itself and the proposed cluster of traits associated with PDA.
PDA is not officially recognised in the international medical manual, the ICD, or the the DSM. Therefore, a standalone diagnosis of PDA is not possible. The relationship between the persistent and marked resistance to demands and Autism (as well as other neurodivergences) is a subject of debate. Some argue that grouping these traits as ‘PDA’ is helpful, while others question its usefulness. Although a diagnosis of PDA is not available, some individuals have a diagnosis of Autism with a ‘demand avoidant profile’ or a ‘PDA profile’ mentioned. Additionally, there are individuals who self-identify with the PDA label and prefer to be referred to as ‘PDA-ers’. Some individuals object to the term ‘Pathological Demand Avoidance’ and suggest using ‘Persistent Drive for Autonomy’ instead. However, others believe that the use of the word ‘pathological’ is appropriate because they perceive these characteristics as ‘all-consuming’.
Autism is characterised by its dimensional nature, encompassing a intricate and interconnected array of strengths, disparities, and obstacles that manifest uniquely in each individual and may vary over time or in diverse settings. A compilation of characteristics can be referred to as a presentation or a profile, which may deviate significantly from the conventional perception of how Autism appears.
PDA is one such profile.
Some individuals, such as Autistic women and girls, as well as those with PDA, may experience missed, misunderstood, or misdiagnosed presentations, ultimately resulting in unfavorable outcomes for the Autistic person’s overall wellbeing.
It is crucial to identify these profiles early on and provide tailored support, as research suggests that this is the most effective way to ensure positive long-term outcomes for the Autistic individual.
Besides Autism, it has been suggested that the presentation of a persistent and marked resistance to demands may be connected with other conditions, including:
There are 6 core characteristics of PDA, which are:
1..Resistance and avoidance of everyday demands, including those that are perceived by others as trivial or routine;
2. An overwhelming need to be in control and avoid being controlled by others, leading to extreme mood swings;
3. The use of social strategies as part of their avoidance;
4. Surface social communication abilities, despite difficulties with social interaction and understanding;
5. ‘Obsessive’ behaviour, often focused on other people or can be focused on performance demands (due to acute anxiety);
6. And, appearing more comfortable in role play and pretend than in reality, sometimes to an extreme extent.
Individuals who experience PDA may employ strategies that can be perceived as socially manipulative in order to evade demands. These strategies include making excuses, diverting attention, delaying tasks, issuing threats, and even feigning physical incapacity (“I can’t use my arms”).
People who experience PDA may also unpredictable mood swings. For example, being super upbeat and excited one minute, then withdrawn and depressive a few minutes later. This has often been described as a “Jekyll and Hyde personality.
It’s important to note that every PDA-er will experience these mood swings and bouts of impulsivity differently – it all depends on the individual, their personality, their environment and any other factors that are influencing their mental and/or physical health. Their flight, fight, freeze, or fawn responses are outward representations of the brain and body’s instinctual response to physiological stress.
The overwhelming need to be in control is a driving force behind many PDA behaviours. The loss of autonomy is perceived as a threat that activates the fight-flight or freeze response, which can lead to heightened anxiety, occasionally escalating to a state of panic, especially when individuals perceive a lack of control or vulnerability. In the event that an individual with PDA reacts with a fight or flight response, it can result in emotional outbursts that might mistakenly lead to a misdiagnosis of Oppositional Defiant Disorder (ODD) or other behavioural conditions.
Individuals with PDA may exhibit a higher level of sociability than expected, displaying good eye contact and conversational skills. However, they may struggle with comprehending social interactions on a deeper level and lack social responsibility. Difficulties in peer relationships and a lack of social boundaries and constraints are also common. Children who experience PDA may face challenges in finding their position within the social hierarchy and may insist on being treated as adults, disregarding the authority of their parents. While they may understand rules, they often do not feel that these rules apply to them. Additionally, they may engage in behaviours intended to shock or upset others, such as asking personal questions, or making inappropriate comments loudly.
In terms of social strategies, PDA-ers may be very good at ‘masking’ difficulties with certain people or in certain situations and may present differently in different settings depending on their anxiety levels. For example, they may employ various tactics such as distracting, excuse-making, outright refusal, or engaging in role-playing to avoid demands.
The obsessive behaviour exhibited by individuals who experience PDA may also differ from others who also experience obsessive behaviour, as the fixations of a PDA-er often revolve around other individuals, whether fictional or real, to the extent of becoming overwhelming for the person on the receiving end. While these defining characteristics provide some insight into how these individuals with PDA may behave in school, at home, at work, or during therapy sessions, it is crucial to remember that, similar to all Autistic folk, presentations can vary from one person to another. A person with Pathological Demand Avoidance (PDA) may appear very composed, collected, and compliant at school, but exhibit more challenging behaviour at home/in their “safe space”. This is often because they have reached their threshold of tolerance and need to release the suppressed anxiety they have been experiencing.
Additionally, people who experience PDA may enjoy role playing, sometimes to the extent that the character they are playing feels more comfortable for them to inhabit than their reality, and they may appear to “lose touch” with reality. They may adopt the personality of someone or something (e.g. a favourite teacher, animal, friend, or co-worker) for an extended period of time. This can often become obsessive, and can get in the way of the person forming friendships and having healthy social interactions.
Below are some examples of the ‘demands of daily life’ that a person experiencing demand avoidance may resist (it’s important to note that the demand does not need to be something unpleasant to trigger distress – demands that the person intrinsically wants to fulfil can still cause equal amounts of distress as something unwanted or unpleasant).
Types of demands include:
There are many ways in which a PDA-er may display resistance. The manner in which someone displays resistance will depend on a multitude of variables, including the person’s age, personality, general stress response tendencies and more.
Some key forms of resistance include:
Note: Aggression may be a form of resistance, however it may also be a panic response to overwhelming anxiety.
The overwhelming anxiety of realising that a demand cannot be avoided, or that all forms of resistance have been tried and exhausted, may result in the PDA-er having meltdown or panic attack, which may include aggression. These states are usually out of the person’s control and are deeply unpleasant, scary and overwhelming for the person to experience.
It is evident that there is a strong correlation between persistent and pronounced demand avoidance and a strong desire for control. However, this connection is not fully comprehended and further investigation is required. Certain studies, although of low quality, have indicated that there is a link between this characteristic and the presence of anxiety as well as an intolerance of uncertainty. Individuals experiencing demand avoidance may be compelled by these factors, which are frequently observed in Autistic folk.
On the other hand, individuals who have personal experience with demand avoidance have proposed that anxiety may be a consequence rather than a cause of perceived threats to their autonomy and control.
Individuals with demand avoidance tendencies may find it beneficial to:
Further reading:
Learn more about meltdowns – All about Autistic Meltdowns: A Guide for Allies
There is substantial evidence indicating that demand avoidance can have a range of effects on individuals who experience PDA, which include:
The loved ones, caregivers or support teams of of individuals who exhibit demand avoidance may also face various consequences, such as:
Further reading:
Learn more about burnout – Navigating Autistic Burnout: Self-care Strategies to Recover and Recalibrate
Regrettably, individuals with PDA frequently encounter a lack of comprehension and incorrect diagnosis. PDA has the ability to conceal or impact the manifestation of Autistic characteristics, resulting in perplexity and challenges in recognising Autism. Moreover, PDA often remains unnoticed and is commonly misdiagnosed as behavioural disorders (like ODD and conduct disorder), triggering a cycle of blame that places the responsibility on the individual (and their parents, if age-relevant) for their intense meltdowns and reactions to threats against their autonomy. Consequently, parents, caregivers and loved ones may feel powerless and bewildered after attempting various therapies, medications, and strategies.
Understanding and acknowledging the traits of PDA is of utmost importance when it comes to providing assistance to individuals with PDA.
Effectively supporting PDAers requires a comprehensive understanding of their unique characteristics. The neurodivergent nervous system tends to exhibit higher levels of rigidity, causing individuals to easily become stressed. Consequently, even simple tasks such as putting on shoes can pose challenges for people with PDA. To address this, it is often advised to adopt low-demand strategies that prioritise minimising demands and empowering individuals with choices that foster autonomy.
Further reading:
How to support an Autistic person as professional – A Professional’s Guide to Supporting Autistic Clients and Patients
Recognising and providing support to individuals who consistently and noticeably avoid demands is crucial, and it is essential to tailor strategies and approaches based on their unique strengths and requirements. Accessing appropriate support heavily relies on comprehending and accepting the concept of demand avoidance behaviour, as indicated by research findings.
Whether the PDA-er in your life is your child, family member, friend, spouse, client or colleague… here are a few strategies to make communicating (hopefully) a little easier on both of you.
1..Work on building a strong relationship rooted in trust. The individual should have the opportunity to experience a sense of safety and stability in their surroundings, and it is crucial for them to receive consistent and reliable responses from their loved ones and support team. By being fully present and actively listening, those supporting the PDA-er can foster trust and establish a strong bond with the individual. When people perceive their loved ones and support team members as trustworthy allies, they are more inclined to respond positively to them.
2. Avoid using ‘demand words’ (e.g. “need”, “now”, “must”, “urgently”).Where possible, try to instead make indirect requests instead of using demand words. For example:
You may also like to try using humour to make demands feel less oppressive to the PDA-er, for instance, “Wanna play a game? Let’s make a bet – I bet you can’t…”
3. Remain calm, and don’t take it personally. Try to view meltdowns or tantrums as intense panic attacks that require your assistance to handle, rather than as acts of defiance. Attempt to refrain from imposing consequences as this frequently exacerbates the situation. Employ the three R’s (Regulate, Relate, and Reason) to acknowledge their emotions and address meltdowns instead. At this juncture, the PDA-er requires reassurance and should not be made to feel ashamed of their behaviour, as they have no control over it.
4. Depersonalise requests. If requests are made too forcefully, queries and instructions may be misunderstood, resulting in a PDA-ers refusal to cooperate. Utilise written requests or visual cues to remove the personal aspect of the demand. Another effective approach is to attribute the need for a request to external factors such as health and safety. For instance, you can explain to the person, “Brushing your teeth helps maintain the health of your teeth and gums, as well as keeping your breath fresh.” Additionally, employing puppets and toys as a ‘third person’ can depersonalise requests and suggest ideas, such as saying, “Lego Leah is curious if we can…”
5. Give indirect praise. People diagnosed with Pathological Demand Avoidance tend to avoid direct praise due to the potential increase in anxiety. Instead, it is more effective to acknowledge their involvement and contributions by offering affirmations and praising the results. For instance, you can express your gratitude by saying, “I appreciate your assistance in tidying up the dishes” or “It’s wonderful to witness your successful completion of all of your projects.”
6. Be consistent. Decide on the non-negotiables, explain the reasons for doing and stick to them. Structure and consistency makes the world predictable, and therefore much less confusing, overwhelming or anxiety-inducing.
7. Be flexible (within reason). Allow the PDA-er a sense of control, and be prepared to negotiate. This might mean watching out for signs that they are getting overwhelmed, so you can adjust the demands before behaviours escalate.
Despite the recognition of demand avoidance as a common trait among Autistic individuals (and possibly other neurodivergent individuals who are not Autistic), there is a lack of extensive research on this topic. Moreover, the existing research on demand avoidance tends to be of subpar quality. Our comprehension of PDA is still in its early stages, and research on this condition is relatively new.
There exists significant divergence of opinions within the Autism community (comprising of Autistic individuals, their families, allies, autism researchers, healthcare professionals, education professionals, and others) regarding the legitimacy and practicality of the PDA concept. However, a widely shared consensus is the necessity for further comprehensive research to enhance our understanding.
Critics argue that the lack of sufficient research evidence makes it difficult to establish PDA as a distinct condition from Autism. They suggest that instead of viewing the complex characteristics of PDA as separate, one should consider the individual’s social, sensory, and cognitive sensitivities, as well as any co-occurring conditions and the suitability of their environment. Additionally, these critics find the label of PDA unhelpful as it implies that the issues lie solely within the individual, disregarding the influence of external factors that can be addressed.
Furthermore, there have been discussions suggesting that labeling individuals with PDA unnecessarily pathologises the unique characteristics of Autistic individuals. This occurs when they deviate from societal norms in their pursuit of autonomy and control over their lives. Additionally, it is argued that these individuals may adopt coping strategies or try to alleviate anxiety related to societal expectations, all while asserting their own agency and desire to make independent decisions.
People who align themselves with PDA have responded to some of the aforementioned criticisms by offering counter-criticisms. Their argument is that those who criticise lack personal experience with these issues, thereby invalidating the perspectives of individuals who have firsthand experience. They further assert that these criticisms result in marginalisation and condescension towards those with lived experience.
For clinicians, it is essential to follow the best practice for conducting an Autism assessment, which involves identifying and documenting an individual’s distinct abilities and difficulties. It is crucial to record any demand-avoidant traits or a strong desire for personal autonomy, regardless of whether specific terminology like PDA is used or not. A comprehensive evaluation for autism should encompass a complete neurodevelopmental profile of an individual, which includes collecting data on all aspects, including demand avoidance, and observing how the environment influences an individual’s characteristics.
Although the concept of Pathological Demand Avoidance is not officially recognised in many clinical settings, individuals can still be diagnosed as Autistic with a ‘PDA profile’ or something similar. However, the use of this language in an Autism diagnosis is not standardised. The acceptance of PDA as a valid term and the availability of assessments for it may vary depending on the clinicians, practitioners, or commissioners in your local area.
It is important to note that many Autistic individuals employ social strategies and can have intense interests that may revolve around people, particularly in the case of Autistic women and girls. Therefore, the presence of these traits should not be disregarded when considering an Autism diagnosis.
In order to provide adequate support for Autistic individuals, regardless of their unique abilities and difficulties, the following elements are essential:
Further reading:
Finding the right mental health support is crucial – Guidelines for Selecting a Neurodiversity-affirming Mental Healthcare Provider
PDA meltdowns, shutdowns and behavioural escalations can be silent emergencies, concealed yet profoundly impactful. Identifying these behaviours and triggers is imperative for anyone seeking to provide assistance to Autistic individuals, be it a family member, friend, caregiver, supervisor, colleague, or even the person undergoing these states.
Exhibiting patience, comprehension, and compassion is arguably the utmost crucial aspect of providing assistance to someone going through PDA. It is essential to bear in mind that an Autistic person experiencing PDA is doing so as a response to overwhelming circumstances. In response, it is vital to demonstrate kindness and reassurance, while simultaneously offering support without exacerbating their already heightened levels of stress.
Never shame them, blame them, or chastise them. Experiencing PDA is not a conscious choice, or a flick of a switch, or an attempt to manipulate a situation with behaviour. It is largely out of the Autistic person’s control, and while they may sense it coming and sometimes may be able to self-soothe or co-regulate enough to stave off a behavioural shift, it is still not a conscious choice.
Empathy and well-informed support can truly have a profound impact on someone grappling with PDA.
It is crucial to bear in mind that the objective of comprehending and handling Autistic PDA is not to “repair” the person, but rather to create a world that is more inclusive and considerate of their requirements. This can only be achieved through raising awareness, providing education, and fostering empathy towards the diverse ways in which individuals perceive the world.
Autistic individuals, like all individuals, possess a variety of experiences and reactions to the world surrounding them. By comprehending these diverse experiences, we can enhance our ability to provide support to Autistic people in a way that acknowledges their unique neurological makeup and enhances their overall well-being.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.
Donate
