Pathological demand avoidance, autism, & ADHD

In this article, we will explore what pathological demand avoidance (PDA) is—often referred to as Persistent Drive/Desire for Autonomy (PDA) by autistic people—and some reasons PDA may occur.

What is Pathological Demand Avoidance (PDA)?

History

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.”^[1]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.”^[2]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.^[3]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.

Characteristics

• 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.^[4]Pathological Demand Avoidance: symptoms but not a syndrome (Green et al., 2018)^[5]Pathological demand avoidance: What and who are being pathologised and in whose interests? (Moore, 2020)^[6]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.^[7]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.^[8]Pathological demand avoidance: What and who are being pathologised and in whose interests? (Moore, 2020)^[9]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.^[10]Pathological demand avoidance: What and who are being pathologised and in whose interests? (Moore, 2020)^[11]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.^[12]‘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?^[13]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.^[14]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)^[15]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.^[16]Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents, Stuart et al., 2020^[17]Pathological 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.^[18]“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.^[19]“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.^[20]‘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?

PDA & ADHD

Most of the existing research has focused on PDA being a subtype of autism. However, many ADHDers identify with PDA traits as well. This isn’t necessarily surprising given that the overlap between autistic and ADHD traits can be high, and up to 80% of autistics also have ADHD.^[21]The comorbidity of ADHD in children diagnosed with autism spectrum disorder. Research in Autism Spectrum Disorders (Stevens et al., 2016)^[22]Identifying comorbid ADHD in autism: Attending to the inattentive presentation. Research in Autism Spectrum Disorders (Rau et al., 2020 It is more surprising to me that there hasn’t been more research on ADHD and PDA since, on the surface, PDA may even look more like classic ADHD traits compared to autistic traits!^[23]Individual differences, ADHD, adult pathological demand avoidance, and delinquency (Egan et al., 2020) Here are some notable examples of the overlaps in characteristics:

Task initiation/completion and attention

ADHDers often struggle to initiate and complete tasks. On the outside, this executive functioning challenge can look very similar to how PDAers avoid tasks. One differentiating factor is that in ADHD, individuals may not be actively avoiding a task. In fact, there are many ADHDers who want to complete their tasks but simply are unable to begin. For example, as an AuDHD student, I struggled to study for exams. But this wasn’t because I didn’t want to study. In fact, I would set aside the time, sit at my desk with my books open, and want to start… but.. initiating the task was hard. Because starting a task and paying attention long enough to complete it is especially difficult for ADHDers when the task is either too easy, too difficult, or too boring, these situations can sound very similar to the avoidance seen in PDA.

Emotion regulation and impulsivity

ADHDers can also experience heightened emotions compared to neurotypicals.^[24]Evidence of emotion dysregulation as a core symptom of adult ADHD: A systematic review (Soler-Gutiérrez et al., 2023) This often looks like experiencing emotions more intensely, more abruptly, and for longer periods of time than neurotypicals. ADHDers are also generally more impulsive than neurotypicals.^[25]Emotional dysregulation is a primary symptom in adult Attention-Deficit/Hyperactivity Disorder (ADHD) (Hirsch et al., 2018) Sometimes, these strong emotional reactions/impulses can get in the way of tasks we must complete.

These characteristics look very similar to those of PDA listed above. In fact, they are so similar that some, like Woods, suggest that instead of PDA being a subtype of autism, perhaps it is even just an example of AuDHD (autism + ADHD).

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 and/or ADHD 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?