5 Things to Know About Pathological Demand Avoidance

Awareness of PDA has grown in recent years, but do we really know what it is?

Reviewed by Abigail Fagan

Key points

• PDA stands for Pathological Demand Avoidance or Persistent Drive for Autonomy.
• PDA is considered a profile of autism.
• PDA may represent a neurotype to be accommodated rather than a disease to be treated.

Pathological Demand Avoidance (PDA), or, as many prefer, Persistent Drive for Autonomy, has gained a lot of traction in social media circles. While some have questioned the role of social media in PDA's increased "popularity," others have spotlighted the unique platforms outline which have allowed individuals to share their lived experiences (Woods, 2018).

So, what is PDA? It involves a strong need to be in charge and make decisions coupled with resistance to follow "demands" such as expectations or others' requests. The PDA Society, the primary organization advocating for the needs of individuals with PDA in the UK, defines PDA as a profile of autism involving aspects of a strong need for control, avoiding demands, and sensory challenges (PDA Society, 2024). They also mention that young PDAers do not typically respond to traditional parenting and support strategies that might be effective for neurotypical youth.

For young people, PDA might show up as having difficulties with requests and social expectations. In adults, anxiety-driven avoidance can expand to areas like procrastination.

PDA is a particular manifestation of autism, as identified by Dr. Elizabeth Newson in the UK (Kildahl et al., 2021). At present, it is not included in instruments for the diagnosis of autism.

While carrying a degree of controversy, acknowledgment of PDA within service circles remains most robust in the UK. Yet awareness of PDA (as well as some misinformation) is starting to reach the U.S. In the U.S. and Canada, PDA North America is a nonprofit spreading education, support and advocacy of PDA. They share the same definition of PDA, but also highlight the interaction between autism and PDA focusing on the stress-sensitive nature of PDAers. According to PDA North America, PDAers and their parents are often judged for behaviors that might look like defiance but in reality are not intentional (PDA North America, 2024).

To better understand what PDA is (and isn't), I spoke with Diane Gould. She is the founder and executive director of PDA North America.

What follows are five key points that I took away from our discussion.

1. It Could Be a Profile of Autism

As of today, PDA is not listed as a diagnosis in the DSM-5. While some do regard it as a 'profile' of autism (Rai, 2024) others have argued that PDA could be another phenomenon on its own or a reaction to environmental challenges (Woods, 2023).

While some researchers have questioned whether PDA may represent a distinct neurodivergence, the overlap between PDA and autism is significant to the extent that PDA is currently most often considered a profile of autism (Kildahl et al., 2021). When I spoke with Diane, she shared, "To understand PDA it's important to understand autism more accurately and broadly."

Autism has historically been viewed through the lens of behaviorism. Yet, understanding PDA leans more on the lived experience and perceptual alterations autistic individuals may experience, including a sensory and information processing style that naturally lends itself to an inundation of details. Whether swamped by chatter in the background or decoding multiple meanings of a phrase, autistic individuals are often constantly facing a state of overwhelm.

The observable behaviors might include refusing requests or a strong insistence on preferences that others might interpret as controlling or defiant. Still, when examined from the perspective of this processing style, these actions are reasonable strategies for operating in a world set up for people with a very different dashboard.

2. The PDA 'Profile' Is Different From Traditional Descriptions of Autism

Stereotypically, autism has been associated with decreased social interest, a lack of eye contact, and sometimes passiveness. Indeed, this description matches the Diagnostic and Statistical Manual Fifth Edition Text Revised (DSM-5-TR) criteria for autism. Still, the Extreme Demand Avoidance Questionnaire (EDAq), the most current tool for evaluating PDA, paints a different picture (O'Nions et al., 2014).

Diane gleans, "PDAers might make eye contact or be socially motivated." Although individuals with a PDA profile often do struggle socially, behaviors mimicking more neurotypical social tendencies or utilizing social reactions to escape are common. For this reason, PDAers might be less likely to be identified as autistic.

A qualitative study of practitioners and individuals with lived experience of PDA in Ireland indicated strong support that a flexible approach to assessment and support is ideal (Doyle and Kenny, 2023). At this time, the EDAq is promoted for research purposes only rather than as a diagnostic tool, however, it can be hoped that as understanding and consensus are built around how PDA is defined instruments will be made available to assist with diagnosis.

3. It's Not Another Term for Oppositional Defiant Disorder

Diane notes that "People with PDA who are struggling are often misdiagnosed." A common misdiagnosis might be Oppositional Defiant Disorder. Also controversial, Oppositional Defiant Disorder is a label characterized by several behaviors children might engage in that go against the desires of adults. The description does not pose an origin for these criteria beyond a diagnosis categorized as a 'disruptive behavior disorder.'

PDA, on the other hand, is an attempt to understand why an individual might need to avoid demands. Diane makes clear that "PDAers are not being defiant on purpose." It's not a disruptive behavior disorder, but a neurodivergence with a highly sensitive nervous system and threat response."

Some have expressed fear that acknowledging the PDA profile in autism could pathologize typical behaviors (Moore, 2020). Still, an exploration into the lived experience of PDA coupled with a reframing toward acknowledging it as a Persistent Drive for Autonomy could be affirming. A study of adults identified with PDA in Ireland found that most participants desired a greater awareness of PDA in society (Kenny and Doyle, 2024).

4. Rewards and Punishments Don't Help

Behavior disorders have historically been treated with behavioral interventions, which heavily utilize rewards and punishments to shape behaviors but do little to understand the reasons behind these. Diane discusses that this does not work for PDAers. She shares, "We need to move away from rewards, consequences, and compliance. Pressure gets in the way. It's not good for mental health, it causes burnout and hurts long-term growth."

Rewards and punishments are additional demands that can create more overwhelm. Even if the individual's observable behavior is impacted in a way that adults around them find agreeable, this does not necessarily represent an improvement in the person's internal experience, happiness, or well-being.

5. Well-Being Can Be a Long Game

When discussing what does work for PDAers, Diane makes clear that the goal of intervention should not be to change a person but to celebrate differences while accommodating needs. She shares that "It's important to focus on long-term well-being, over short-term progress." Diane discusses that emphasizing relationships and collaboration rather than compliance is central.

A PDA profile is not a disease to be treated but more of a neurotype to be accommodated. Finding what strategies are most effective while building up those skills for self-advocacy is key. For many PDAers, self-advocacy may been falsely categorized as challenging behavior in the past and so this is an additional barrier that may need to be overcome.

In Closing

PDA is a neurotype associated with autism. The behaviors of PDAers are often misunderstood by those around them. With increased awareness, we can hope to create a more accepting and welcoming world for all.