What is Pathological Demand Avoidance (PDA)?

Not that kind of PDA.

Pathological Demand Avoidance (PDA) was first identified in the 80’s in the UK by Elizabeth Newson and proposed as a “subtype” of autism, though it has gained most significant traction in the past 8-10 years. Okay, so what actually is it? Per the PDA Society, typical “features” of PDA include: resisting and avoiding demands, being socially manipulative, lacking depth in social understanding, experiencing mood swings and impulsivity, and obsessive/repetitive behavioral patterns. This label was originally almost exclusively associated with autism spectrum disorder; however, it has not been included at times to describe some presentations of ADHD and other behaviorally-based disorders like ODD and DMDD or even just forms of basic anxiety. 

The main question here is: Is PDA really its own disorder, a subtype, or just another way to describe behaviors we have been attempting to describe for decades? As you might be thinking, are these “symptoms” even specific to a singular or select few diagnoses? PDA has also been very confusing for parents and professionals alike, as it is not a DSM diagnosis and there really is no concrete or consistent description or standard symptoms. Some have also criticized proponents of PDA for being another “new product to sell.” Moreover, when we make things categorial (i.e., you either have it or you don’t based on a certain criteria), you can actually end up with more differences than similarities. Consider height for example: if we were to say that individuals 5’8 and under are “short” and those above 5’8 are “tall”, you may have two people who are 5’7 and 5’9 that are way more similar in height than someone who is 5’9 and 7’1. So in this respect these categories aren’t really demonstrating any pervasive similarity and there may actually be more overlap in separate categories.

Many people with ASD or ADHD diagnoses experience hyper vigilance and under-arousal; that is they are generally on edge and quick to react to any perceived threat. They often struggle with either sensory overload/overstimulation, sensory-seeking needs, having their intent ignored or misunderstood, fear of uncertainty, difficulty expressing needs or fears, missing social cues, struggling to manage emotions, and impulsivity. Many people with autism and/or ADHD experience “autistic burnout or shutdown.” This is a state of chronic exhaustion where a person’s skills begin to degrade and their tolerance to stress is greatly reduced, leading to an inability to process the environment.

Some autistic individuals  have expressed that a PDA label undermines the agency self-advocacy of those who are being labeled, not to mention a lack of understanding of the reasons and intent behind such behavior. In fact, it has been argued that much of the behavior that is classified as “demand avoidance” is actually a rational reaction to anxiety or perceived threats, given the autistic or ADHD individual’s experience. There is only one parent report measure that has been constructed to assess for PDA symptomatology; however, its use is limited and it is intended for research not for clinical assessment. Plus, the majority of the time, it is actually the parents’ report that is largely driving the diagnosis.

Additionally, many professionals describe a “double empathy” struggle, in which people with autism (and sometimes ADHD) struggle both to be understood by others AND struggle to understand others’ perspectives, intents, and instructions. Moreover, it has been found that autistic and ADHD individuals take longer to habituate, or get used to, new situations or changes to their routine, which can result in a panic state. So, sometimes, in a reaction to such events and/or in an effort to control the uncontrollable, these individuals may engage in a “meltdown”, “panic attack” or withdrawn/shut down, which can often be misinterpreted as aggression or noncompliance instead of a neurodivergent person attempting to fit into a neurotypical world. Sometimes it is as simple as a reaction to a trusted person not being available to the child or a certain aversive or unsupportive peer being in their presence. A frequent concern from parents has been that many children diagnosed with ASD, whether with a co-occurring label or PDA or not, end up not being successful in traditional school settings and are often misunderstood by school staff and/or their peers.

There is however, more agreement in terms of some of the struggles that those with ASD or ADHD may experience and what services may be beneficial- which is really the point anyway. Many people with ASD or ADHD diagnoses experience hyper vigilance and underarousal- that is they are generally on edge and quick to react to any perceived threat- and struggle with either sensory overload/overstimulation, sensory-seeking needs, having their intent ignored or misunderstood, fear of uncertainty, difficulty expressing needs or fears, missing social cues, struggling to manage emotions, impulsivity, and physical pain, amongst others. Dr. Devon Price explains in their book, Unmasking Autism, that many people with autism and/or ADHD experience “autistic burnout or shutdown.” This is a state of chronic exhaustion where a person’s skills begin to degrade and their tolerance to stress is greatly reduced, leading to an inability to process the environment.

In my clinical experience, I once observed a situation in which a large part of the child’s irritability was related to significant hunger- the child was unable to eat in the cafeteria due to the combination of overstimulation from noises, florescent lights, and smells in addition to their pickiness and aversion to certain foods. Similarly, sometimes a word, smell, or a sound can trigger a negative memory from the past, as many autistic people tie memories to sensory experiences or mental images. Also, many autistic people experience frequent intrusive thoughts inside their head, which interrupt their ability to listen and communicate.

Now one of the proposed “solutions” for PDA is to “reduce the perception of demands and provide a sense of control or autonomy.” While I believe the intent behind this is largely well-meaning, it does have a feeling of being manipulative or deceiving in nature. Instead, how can we present things in a way in which they are not so demanding? How can we give true control and engage in joint problem-solving. The key here is to support these needs by showing patience, understanding, and assistance in skill-building through empathy, sensitivity, trust, humor, and validation. Consider if the presentation, subtype, or otherwise is truly a consistent pattern of atypicality that warrants special attention and intervention. It is always best to focus on the why and how and trying to view things from the inside as opposed to the outside. Ask yourself, is this child really “avoiding” or are they just disconnected from your reality at that moment and what might be driving the response? From an academic perspective, classroom modifications, speech/language therapy, different methods of schooling, and psychoeducation for parents and teachers are some examples of ways to meet these needs.

As Barry Prizant explains in his book, Uniquely Human, the goal is to provide choices and control within structure and predictability but not give unlimited control and end up enabling neurodivergent children. So before we place labels on children, let’s consider if the presentation, subtype, or otherwise is truly a consistent pattern of atypicality that warrants special attention and intervention, OR if we can take in all the information from a different perspective and paying attention to all the details, which may be most meaningful to the child we are trying to help. It is always best to focus on the why and how and trying to view things from the inside as opposed to the outside. Ask yourself, is this child really “avoiding” or are they just disconnected from your reality at that moment and what might be driving the response?