What is Pathological Demand Avoidance (PDA)?
PDA was first coined by developmental psychologist Elizabeth Newson (1929–2014) in 1980. She described it as a distinct pervasive developmental disorder that can appear in autistic children and which presents as an “unusually sociable” and “manipulative” version of “typical autism.”Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders (Newson et al., 2003)
Today, PDA is not officially recognized as a diagnosis by the DSM-5, however it is widely considered a subtype of autism.
Clinicians tend to believe that PDA is one of the most difficult conditions to treat in children due to a “problematic anxious need for control” or a “rigid and maladaptive response to every demand, including an aversion to intolerance of uncertainty leading to controlling behaviour.”Editorial: Demand avoidance — pathological, extreme or oppositional? (Ozsivadjian, 2020)
Based on my heavy employment of quotation marks above, you can probably deduce that I am not a fan of the language used, and the implied meaning behind how PDA is often described in scientific literature. In addition, the traits of PDA are not well defined.Pathological demand avoidance in children and adolescents: A systematic review (Kildahl, Helverschou, et al., 2021) Nonetheless, below we introduce our version of the key characteristics of PDA based on published findings and autistic community members with lived-experience.
- PDAers are often described as likeable, sociable, chatty, creative, charming, charismatic, affectionate, determined, imaginative, and humorous.
- Individuals with PDA tend to have high levels of camouflaging leading to more displays of neurotypical social norms
- E.g. they may employ neurotypical forms of nonverbal communication, such as eye contact.
- They also exhibit high levels of anxiety, particularly in relation to uncertain situations
- E.g. they may experience a panic attack or meltdown when they feel a lack of control in a situation
- PDAers tend to have difficulty with self-regulation
- E.g. they can experience unpredictable, impulsive, and rapidly changing emotions
- Most notably, individuals with PDA have high levels of avoidance for tasks and demands
- E.g. they may be unable to complete daily tasks such as brushing teeth, doing homework, completing chores, following what someone has asked of them, etc.
This last trait is at the core of PDA and forms the basis of how clinicians and scientists define this condition. When someone takes steps to avoid a task, they may come across as controlling, making excuses, or manipulative, even though for the PDAer, this isn’t the intention. It is for this reason that many parents, teachers, and clinicians view this avoidance behaviour as “pathological.” Additionally, when the avoidance comes in response to a demand, like when your boss asks you to complete a task and you are unable to, this is often viewed as “noncompliance.”
What many people without lived experience don’t recognize is that these avoidance strategies and behaviours are not deliberate choices, but rather coping mechanisms for dealing with overwhelming situations. Moreover, not being capable of completing daily tasks is distressing and disabling.
Is PDA valid?
There is a lot of controversy around whether PDA is a legitimate autistic subtype.Pathological Demand Avoidance: symptoms but not a syndrome (Green et al., 2018)Pathological demand avoidance: What and who are being pathologised and in whose interests? (Moore, 2020)Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference (Woods, 2019) One major reason for this controversy is that the vast majority of research is performed in autistic children and rely on parental report of behaviour.Pathological demand avoidance in children and adolescents: A systematic review (Kildahl, Helverschou, et al., 2021) This means that the results are biased by how parents interpret their children’s behaviour as opposed to looking directly at the lived experience of the person with PDA.
As a scientist myself, my perspective on the literature is that these traits exist, however, what is called into question is the underlying reason these traits develop and how pathologizing them isn’t neurodivergent-affirming. This aligns with others who also call into question the label of PDA and how the way it is currently defined may not be helpful for autistic individuals.Pathological demand avoidance: What and who are being pathologised and in whose interests? (Moore, 2020)Pathological demand avoidance in children and adolescents: A systematic review (Kildahl, Helverschou, et al., 2021)
Below we discuss some of the main theories about the origins of PDA in a more autism-affirming manner:
Not wanting to conform to neurotypical standards
For some individuals, it is possible that PDA traits develop as a result of not understanding neurotypical norms as a child. Without understanding “what is the point” of performing certain demands or tasks, they may feel compelled to reject conformity. This may also manifest as a desire to maintain agency amid neurotypical demands. Autistic children tend to be forced to comply with how parents, teachers, and clinicians think they are “supposed” to behave, and so these traits are a way to self-advocate.Pathological demand avoidance: What and who are being pathologised and in whose interests? (Moore, 2020)Pathological demand avoidance: my thoughts on looping effects and commodification of autism (Woods, 2017)
Rational demand avoidance (RDA)
Rational Demand Avoidance was proposed by autistic scholars, Dr. Damian Milton and Richard Woods, who argue that PDA is better understood as RDA. RDA implies that these behaviours are rational given that autistics are forced to navigate neurotypical environments.‘Natures answer to over-conformity’: deconstructing Pathological Demand Avoidance (Milton, 2013) For example, if you refused to go to school as a child, was this refusal due to some pathological drive to be controlling? Or was it because you were bullied, were required to cope with the sensory sensitivities of loud and brightly lit classrooms, and were required to navigate unclear rules and expectations? If you have been labeled as manipulative, is it more likely that you are trying to influence your friends behaviour as a way to manage confusing and unpredictable social interactions or that you don’t understand social hierarchies?Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme/‘pathological’ demand avoidance (O’Nions et al., 2018)
If we are living in a world that doesn’t acknowledge or recognize our needs, these behaviours seem like very rational ways to manage our surroundings!
Anxiety coping mechanism
Not surprisingly, living in a world that doesn’t acknowledge or recognize our needs means that autistics commonly experience higher levels of stress and anxiety compared to the general population.Perception of Life as Stressful, Not Biological Response to Stress, is Associated with Greater Social Disability in Adults with Autism Spectrum Disorder (Bishop-Fitzpatrick et al., 2017)Clinically Significant Anxiety in Children with Autism Spectrum Disorder and Varied Intellectual Functioning (Kerns et al., 2020) Interestingly, there seems be an overlap between high levels of anxiety and PDA. Since avoidance behaviours are common in anxiety, this leads many to believe that PDA behaviours are actually anxiety coping mechanisms.Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents, Stuart et al., 2020Pathological demand avoidance: What and who are being pathologised and in whose interests? (Moore, 2020)
While avoidance may seem inappropriate when judged against what is anxiety-provoking for a neurotypical, taking into consideration that autistics have unique perspectives on what situations may be stressful allows for the possibility that these avoidance behaviours are natural responses to stressful circumstances.“If we do not look for it, we do not see it”: Clinicians’ experiences and understanding of identifying post-traumatic stress disorder in adults with autism and intellectual disability (Kildahl et al., 2020)
A result of trauma
Furthermore, what looks like PDA may actually be a survival mechanism and a way of coping with trauma.“If we do not look for it, we do not see it”: Clinicians’ experiences and understanding of identifying post-traumatic stress disorder in adults with autism and intellectual disability (Kildahl et al., 2020) For example, avoiding a task could be a ‘flight’ trauma response. In contrast, our high levels of camouflaging and desire to control social situations could be a ‘fight’ trauma response.
PDA = Persistent/pervasive Drive for Autonomy
Some members of the autistic community prefer to refer to PDA as a persistent drive for autonomy. This reframing helps to remove the stigma around PDA and to serve as a reminder that what may look like manipulative and controlling behaviour to an outsider, is likely an attempt to self-advocate as a reaction to trauma and anxiety.
Although research on PDA co-occurance with other neurodevelopmental and mental health conditions is lacking, it is thought that PDA may not be unique to autism, but may present in other neurodivergent conditions as well, such as ADHD and anxiety. This furthers the theory that PDA isn’t a disorder or pathology on its own, but rather a set of traits that originates from trying to cope in a stressful neurotypical majority society.
If PDA continues to be researched mainly from the perspective of neurotypicals, understanding PDA through the lens of a rational response to stress and managing neurotypical demands may not be taken into consideration. This likely leads back to the double-empathy problem—where autistics and non-autistics find it challenging to understand each other.‘Natures answer to over-conformity’: deconstructing Pathological Demand Avoidance (Milton, 2013)
If you experience PDA traits, do any of these explanations make sense for you? And how do these labels of Pathological demand avoidance, Persistent drive for autonomy, and anxiety/trauma fit for your lived experience?
Supporting Your PDA needs
Regardless of how you interpret these traits, they remain debilitating for everyone who experiences them. Considering the evidence linking stress and anxiety with PDA, our perspective is that in addition to learning about the struggles of being autistic amid a neurotypical society, supporting your anxiety and processing your past neurodivergent traumas may be the most effective ways for coping with daily tasks and demands.
We suggest being aware of treatments (like ABA) that promote conforming to neurotypical standards as a means to treat PDA. Also, having people impose rules and demands may trigger these intense needs to self-advocate, reject conformity, and act out of fight/flight. Instead, opt for neurodivergent-affirming perspectives and relationships and environments that validate your lived experiences and promote agency.
Since there isn’t much good scientific advice for coping with PDA, turning to community and collective knowledge is important. What strategies do you find helpful for tackling daily tasks and demands?
Let us know what you think!