What is Pathological Demand Avoidance (PDA)?

ANIKA SAWATSKY, MA, REGISTERED CLINICAL COUNSELLOR IN CHILLIWACK, BC

Pathological Demand Avoidance (PDA) is a term used to describe a profile of Autism Spectrum Disorder (ASD), characterized by extreme resistance to everyday demands and requests. Although it is commonly understood as a subtype of ASD, we are still in the early stages of our understanding of PDA and research is still in its infancy. Thus, PDA is not yet officially recognized as a separate diagnostic category in diagnostic manuals such as the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) or the International Classification of Diseases (ICD-11). Because of its complex and challenging presentation, the concept of PDA remains somewhat controversial. Hesitation or struggle for a child to comply with demands is frequently pathologized. 

In 1983, Elizabeth Newson, professor of psychology at the University of Nottingham coined the term “Pathological Demand Avoidance” to describe the trait of avoiding and resisting regular life demands, even when meeting those demands were in the client’s best interest. Since that time, clinicians and researchers have extended the term to include other characteristics, such as preferring variety and novelty as opposed to highly structured. Discussion about PDA originated and centres in the United Kingdom, although it is becoming more well-known throughout the USA, Canada and Australia.

The PDA profile of autism means that individuals who fit this presentation share traits of autism, including the DSM descriptions: “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviour, activities or interest” present since early on and to the degree that these traits “limit and impair everyday functioning.” In addition to the specifiers mentioned here, the diagnosis of autism frequently includes sensory issues in a variety of expressions. The differing sensory profile of a person with autism can include sight, smell, touch, hearing and taste, as well as proprioception (the sense that allows us to perceive the location and movement of the body), vestibular sensation (the sense that helps us know what our body is doing in relation to the ground, and whether it is moving or not), and interoception (the sense that helps us understand messages from inside our bodies, such as hunger, thirst or how we feel in general).

Characteristics of someone on the autism spectrum with PDA include the above as well as a need for control over their environment to the extent that their nervous system becomes activated when they experience demands or expectations placed on them or when they perceive a loss of control. People with the PDA profile of autism also generally excel at masking, meaning they intentionally learn and demonstrate neurotypical behaviours, although masking comes at a high emotional, physical and cognitive cost. Some researchers have thought of PDA as anxiety-driven, but we are learning that it is more than that; PDA is a nervous system disability. Lastly, people with features of PDA do not respond well to conventional parenting, teaching or support approaches such as rewards and consequences, praise or punishment.

Some traits of PDA may overlap with other diagnoses such as Oppositional Defiant Disorder (ODD), Attention Deficit / Hyperactivity Disorder (ADHD), or anxiety disorders. Thus, it is important to have a comprehensive assessment completed to differentiate PDA from other conditions. It is also important to remember that autism and PDA are on a spectrum and are dimensional. In other words, autism and PDA traits vary greatly from person to person and can present differently depending on the environment or situation.

As mentioned, people with the PDA profile of autism struggle with conventional parenting, teaching and support strategies because their nervous system is activated when they perceive they have lost their internal locus of control. Due to a lack of awareness and understanding, the support offered rarely meets the needs of these families and sometimes does more harm than good. Early identification and tailored support are being recognized in research as important indicators of positive long-term outcomes, however, recognizing and addressing them in a meaningful way increase the potential for success as well. Negotiation, collaboration and flexibility are essential components of a beneficial approach. Collaboration and negotiation can help those with PDA to feel less anxious and more in control. Flexibility allows for creative, adaptive solutions and less black-and-white thinking.

Although PDA is not yet included in the DSM-5 or the ICD-11, it is becoming more widely known as a distinct profile of autism, and researchers and clinicians are becoming more familiar with its varied presentations. Researchers are working to identify and address the challenges that are faced by people living with it and advocating for changes to the systems that all too often traumatize and victimize those struggling with its effects. By becoming aware and understanding the features of PDA, and working to adopt inclusive strategies, individuals with PDA can become better equipped to navigate their daily lives and they and their families can begin to thrive within their communities.

References:

https://www.pdasociety.org.uk/what-is-pda-menu/about-autism-and-pda/

https://www.cdc.gov/ncbddd/autism/hcp-dsm.html 

https://childmind.org/article/pathological-demand-avoidance-in-kids/

https://www.autismawareness.com.au/aupdate/a-brief-history-of-pathological-demand-avoidance

https://www.spectrumnews.org/news/pathological-demand-avoidance-in-autism-explained/

COUNSELLING FOR NEURODIVERGENT INDIVIDUALS IN SURREY, VANCOUVER, CHILLIWACK AND ONLINE IN BC