Origins of the term PDA
The term Pathological Demand Avoidance (PDA) was first introduced by developmental psychologist Prof Elizabeth Newson OBE in the 1980s. She used it to describe children attending her clinic who showed an “obsessional avoidance of the ordinary demands of everyday life.” She said these children were ‘“atypically autistic” but also typical of each other.’
At the time, Newson proposed PDA as part of the Pervasive Developmental Disorders (PDD), which we now think of as the autism spectrum. Continued research into PDA has led to its recognition as a profile of autism, though more studies are needed to fully define PDA, understand how to identify it, and discover what support works best for people with this profile.
PDA and autism research
The first academic paper on PDA was published by Newson’s team in 2003, but research remains in its early stages, with fewer than 100 peer-reviewed studies to date. In comparison, broader autism research spans decades and thousands of studies, focusing on areas like social communication, sensory processing, and repetitive behaviours.
Demand avoidance itself has received limited attention. While it is experienced by autistic individuals both with and without a PDA profile, PDA presents unique patterns.
- For many autistic people, demand avoidance can occur for clear reasons, such as sensory overload or situational stress.
- In PDA, demand avoidance can also happen for less obvious reasons, such as the mere existence of a demand or expectation—even for activities the individual enjoys. This behaviour is often evident from an early age.
More research is essential to define PDA, understand how it overlaps with other conditions, and, most importantly, discover effective ways to support individuals experiencing it.
Perspectives on PDA
There is ongoing debate about how PDA fits into the autism spectrum and beyond:
- A profile of autism: The current understanding is that PDA is a profile of autism, with a unique combination of features like using social strategies to avoid demands and experiencing significant mood swings.
- Alternative theories: Some researchers argue that PDA is not a distinct profile but should be described as a variation within autism. Others prefer to think of it as stand-alone condition. These theories relate to how we, as humans, describe and classify the experience, but can also help us think about its origins.
- Overlaps with other conditions: Studies have found overlaps between PDA and other conditions like ADHD or ODD, with some suggesting PDA may be better understood as part of these conditions.
Within the PDA and autistic communities, opinions are also varied. Many individuals find the concept of PDA helpful for understanding their experiences, while others find such a label, with its focus on the avoidance of demands, unhelpful (or unacceptable).
The term “pathological” has also drawn criticism for its negative connotations. Alternatives such as “Persistent Drive for Autonomy” or “Extreme Demand Avoidance (EDA)” have been suggested. However, some individuals feel the original term best reflects their lived experiences.
Regardless of differing opinions, one shared goal is clear: the need for better understanding, recognition, and person-centred support for people with this shared experience.
Challenges for researchers and clinicians
PDA presents unique challenges for professionals:
- Lack of Diagnostic Criteria: While there are descriptions and tools to help Identify a PDA profile, criteria have not (yet) been included in Diagnostic Manuals, so clinicians often rely less on research and more on personal judgment, leading to inconsistencies in diagnosis and a “postcode lottery.”
- Regional Differences: While PDA awareness is growing internationally, much of the research and practice is UK-focused, resulting in varied approaches across regions.
- Complexity in Presentation: Distinguishing PDA from other conditions like AuADHD or ODD adds to the difficulty.
The PDA Society supports researchers and clinicians by offering networking opportunities, access to the PDA community, and help co-creating projects with individuals who experience demand avoidance. For more information, please contact research@pdasociety.org.uk.
Looking ahead
There is broad consensus that more research is urgently needed. This research should involve people with PDA at every stage to better understand:
- How PDA fits within the autism spectrum and other conditions.
- What underlies the characteristics of PDA
- The best ways to support individuals experiencing PDA
By deepening our understanding, we can work towards improving the quality of life for people with PDA and their families.