Pathological Demand Avoidance: Understanding PDA and its Relationship to Autism

Do you feel frozen whenever you feel like you should be doing something? Do the demands of day-to-day tasks make you feel like the walls are closing in? If demands cause you severe anxiety that gets in the way of completing daily activities, you might be experiencing demand avoidance. Pathological demand avoidance (PDA) is most commonly connected to autism, contributing to the great diversity of the autism spectrum. However, allistic (non-autistic) individuals can also align with a PDA profile. PDA can have significant impacts on a person’s life, but broader social awareness of PDA is still limited. Many support strategies, including neurodiversity-affirming therapy, can help PDA individuals manage demands and move through life with less anxiety.

PDA is a behavioral profile marked by a range of characteristics––most notably a persistent, intense need for autonomy and resistance to demands. Individuals with PDA often struggle with the ordinary demands of daily living, such as:

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• Eating
• Sleeping
• Going to the bathroom
• Going to work or school
• Completing daily tasks
  
  

PDA is not the same as disliking when someone asks you to do something or dodging dreaded demands, like putting off tasks at work. Avoiding demands is natural, and many people eschew demands to varying degrees, especially when overwhelmed, stressed or tired. Some individuals, however, have a greater propensity for demand avoidance behaviors. This can be related to:

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• Mental health
• Physical health
• Personal history with demand—for example, growing up with strict parents, or having to assume adult responsibilities at a young age
• Developmental disorders (like autism)

Demand avoidance is somewhat common among autistic people, but not everyone who resists demands exhibits a PDA profile.

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For individuals who experience PDA, demand avoidance shows up in all corners of their lives. It’s a consistent, intense response to demands in all their forms. Many people with a PDA profile describe feeling that they lack control when confronted with a demand, often leading to intense anxiety. PDA individuals often use social strategies—meaning interpersonal approaches, as opposed to outright refusal or shutting down—to avoid demands. They may also be more impulsive and experience rapid changes in their mood.

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PDA is not included in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), and isn’t considered a clinical diagnosis. However, some autistic people with PDA may have demand avoidance noted in their autism diagnostic report. PDA profiles aren’t always included in diagnostic reports for autism, and individuals who weren’t noted as demand-avoidant during their diagnosis may still exhibit or identify with PDA.

For individuals with PDA, demands can feel nearly constant. They are more than just direct demands from other people. Demands and expectations can include, but are not limited to, any of the following:

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• Activities of daily living such as eating, sleeping, using the bathroom, showering or brushing  teeth
• Social norms and expectations, like the demand to respond to greetings in certain ways or participate in small talk
• Implicit demands, such as the demand to read and respond to emails and text messages
• Perceived demands—for example, praise for a job well done may carry the expectation that the action should be repeated in the same way, even if that implication was not intended
• Self-initiated demands, including pleasurable activities the individual wants to do, like partaking in hobbies or going outside on a nice day

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Many demands also contain additional, smaller demands. For example, going to work is an expectation that entails other ongoing demands such as sitting still, attending meetings, completing numerous tasks and transitioning between responsibilities. Dining in a restaurant can be a social or relational demand that includes arriving at a certain time, choosing what to order, talking to the server and eating when expected.

PDA was originally proposed as a part of the autism spectrum and is still widely seen as closely related to autism. One small study suggests that around 20% of autistic people may demonstrate some PDA traits. However, it seems a relative minority of autistic people align with all characteristics of a PDA profile. Ultimately, more research on the prevalence of PDA in autistic individuals is needed, especially in autistic adults.

However, autistic individuals are not the only ones who can experience PDA. PDA occurs in people with attention deficit hyperactivity disorder (ADHD) at a higher rate than in neurotypical people, and a 2020 study even suggests that PDA traits could be more common among ADHDers than in autistic individuals.

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PDA shares traits with other diagnoses, like complex PTSD (cPTSD) and oppositional defiant disorder (ODD). However, it isn’t entirely clear yet whether a relationship exists between PDA and these other diagnoses or the nature of the potential relationship. With more research, we may better understand how these diagnoses might overlap with PDA.

The PDA profile includes many other traits in addition to an enduring resistance to demands. The following traits are associated with PDA, but not everyone who experiences demand avoidance or self-identifies with PDA may exhibit all of these traits or experience them in the same way.

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Each person with a PDA profile may exhibit different manifestations and combinations of PDA behavior and traits. Notably, some people experience PDA characteristics in a more “internal” way that is less discernible to others. This is similar to, and often an extension of, masking––a behavior some autistic people exhibit where they conceal their autistic traits from others in order to protect themselves from discrimination.

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Here are several examples of how PDA shows up in autistic people. 

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Desire for autonomy

The need for control and autonomy is the core of PDA. In fact, some advocates have pushed to rebrand PDA as a “persistent desire for autonomy” or “pervasive drive for autonomy.” Many find this label more humanizing, addressing why people resist demands rather than pathologizing their avoidance. 

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This overwhelming desire for control is typically driven by extreme anxiety or panic that is brought on by demands. Taking control of the situation by resisting the demand can often feel like the only way to mitigate anxiety.

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Heightened emotion

PDAers can struggle with emotional regulation and can often experience intense emotions as well as rapid shifts in mood. Often, other people may not be able to see or understand what is causing these emotions. For PDAers, these emotional highs are direct consequences of regular threats to their autonomy, often driven by anxiety and panic.

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Impulsivity

Individuals with PDA profiles are more inclined to act impulsively––although impulsivity isn’t a trait that’s typically associated with autism. For people with PDA, reacting impulsively often has to do with the anxiety or threat response they experience when faced with demands and can be a part of their approach to avoid them.

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Social behavior

Individuals with PDA also differ from autistic individuals without PDA in their social behaviors. Consistently and effectively resisting demands requires social dexterity, and many people with PDA have strong social skills and can be very charismatic. While this can be true of autistic people, PDAers tend to have more of a social drive than autistic people without PDA. However, like autistic individuals without PDA, people with PDA may not intuitively understand social norms or cues despite their social adeptness.

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Intense fixations

Both PDAers and autistic people without PDA tend to form very strong interests and fixations on various subjects. PDAers, however, are more likely to develop intense fixations on people—who can be known to them, famous or fictional—than autistic individuals without PDA.

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Daydreaming and fantasy

People with PDA profiles are more likely to feel comfortable with roleplay and fantasy. Oftentimes, daydreams and imagined realities can provide an escape from the omnipresence of demands.

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Creativity and humor

Autistic people are often highly creative, and the same is true for individuals with PDA. The ability to roleplay and create fantasy worlds, as well as the need to think outside the box to avoid demands, may contribute to heightened creativity among people with PDA.

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People with PDA profiles also often have sharp senses of humor, a factor that contributes to their charisma.

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Responsiveness to support strategies

Individuals with PDA don’t always respond to traditional social and support approaches, like praise or strict boundaries. People with PDA may also fare better with support approaches that don’t typically work as well for autistic individuals without PDA. For example, some autistic people find it helpful to limit the number of decisions they need to make while in a state of overwhelm or distress. For individuals with PDA, however, it’s important to have as much choice and autonomy as possible.

In addition to the above ways that PDA profiles can present in autistic people, PDA individuals often employ a large catalog of approaches to try to avoid demands. Many of these are social strategies, including:

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• Making excuses for why they can’t do a task
• Deflection and distraction (changing the subject, creating a diversion, being charming or using flattery)
• Negotiation and bargaining
• Procrastinating on a task they have agreed to complete
• Leaving the situation or person that is imposing the demand
• Retreating into a fantasy world

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When these strategies fail and demands persist, it can be extremely distressing. Individuals may become angry and upset, have a meltdown or experience a complete shutdown. These reactions are never a choice––they’re an involuntary threat response to immovable distress caused by demands.

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PDA has only been recognized as a distinct set of characteristics relatively recently. Research on PDA is still very limited. The exact nature of PDA is the subject of ongoing debate, and many advocates have critiqued the creation of the PDA label and its implications. Others argue that it is an important label to uphold and research further.

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Evolution of PDA

British psychologist Elizabeth Newson coined the term pathological demand avoidance in the 1980s––but the term wasn’t published in a peer-reviewed paper until 2003. PDA was initially proposed as a unique diagnosis within the autism spectrum—similar to how Asperger’s syndrome, a term no longer in popular use, was once considered to be a unique autistic subtype.

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Today, PDA is most widely understood as a possible profile of autism, meaning it’s a pattern of traits and behaviors that often occur together in autistic individuals. PDA traits can also present in allistic individuals, and some advocates and researchers believe PDA is more likely to be a distinct neurotype, one that can—but doesn’t have to—overlap with autism. Evidence suggests that regardless of how PDA is classified, it likely has a relationship to autism and ADHD, though its exact nature remains unclear.

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The generally accepted list of PDA traits has changed little since it was first proposed, although some advocates have recently adopted more affirming and less stigmatizing language to describe them.

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Controversy

Researchers, healthcare providers and advocates have leveled criticism against the popular discourse around PDA. Critiques range from characterizing the PDA label as unhelpful to downright harmful. Here are three arguments that critics of the term have made.

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It’s unnecessarily pathologizing

To many, the term pathological demand avoidance is unnecessarily pathologizing, since it ignores the reasons that autistic people and others who experience demand avoidance behave the way they do. When individuals with PDA are in distress, they are often treated as troublesome or willfully defiant, a characterization that neglects the ways their needs are not accommodated.

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Limited research

Other critics of the PDA label have cited the limited research on PDA. These advocates believe there isn’t enough substantial evidence to consider PDA a distinct behavioral profile or a profile of autism. Similarly, some have expressed concern that there isn’t research supporting any clinical applications of the PDA label, questioning its usefulness.

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Diminishing nuance

PDA has also been viewed as an unhelpful label that diminishes nuance. Autism is dimensional, meaning the nature and intensity of autistic traits can vary greatly across autistic individuals. The autism spectrum is incredibly diverse, and some advocates argue that the PDA label creates too neat of a box and flattens autistic experiences. They believe each autistic person’s characteristics and needs should be assessed and addressed on an individual level that acknowledges the nuanced ways they may or may not align with PDA traits.

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Support for the PDA label

Despite criticisms of the PDA label, other advocates have argued that it offers value to individual lives and our collective understanding of neurodiversity. Here are four arguments in favor of the label.

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Increased understanding

Without identifying their PDA traits, many people may feel that something is missing from their understanding of themselves. Autistic individuals with PDA may find their autism diagnosis doesn’t quite explain the full scope of their experiences and behaviors. The PDA label allows them to recontextualize their lived experience and explore their behaviors, feelings and motivations in new ways. This can be an immensely rewarding process of self-discovery and can provide a great deal of comfort and peace.

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Community building

The PDA label also creates fertile ground for community since it allows PDAers to find others who intimately understand their experiences. The value of these communities can be enormous. Individuals with PDA can often feel misunderstood, and seeing yourself in other people who also see and understand you can be deeply nourishing, fulfilling and supportive.

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Access to support

Putting a name to your experiences can also make it easier to find meaningful support. Individuals who know they experience PDA can more readily research and explore support strategies, including seeking accommodations in their daily lives. People with PDA can also benefit a great deal from neurodiversity-affirming therapy with therapists who understand that their patient experiences PDA and provide tailored support.

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Broader cultural awareness

Advocates also argue the PDA label can move the needle towards acceptance and understanding. Putting a name to PDA allows for broader cultural awareness and opportunities to educate communities on how to support people with PDA. The PDA label also allows for further research, which holds the potential to expand our knowledge of PDA and how to support those who live with it.

Several approaches can be helpful for people with PDA to support themselves and for loved ones to support them. All support strategies should be anchored in respect and compassion. Here are some examples.

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Reframing language

One way a person supporting someone with PDA can shift or disguise demands is to employ less directive language. Instead of saying, “Can you do this now?” or “You need to…,” phrases like “I wonder if…” or “Maybe we could explore…” can leave the door open for PDAers to make their own choices.

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Offer choices

As much as possible, let PDA individuals be in control. Both people with PDA and their loved ones can work to create opportunities for PDAers to make choices, and when full autonomy isn’t an option, identify a few achievable options to choose from. 

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Be adaptable

For those supporting a PDA individual, be flexible with your expectations. Accept “no” as an answer when you can, be open to negotiation and eliminate unnecessary demands. Know what is non-negotiable to you in your relationship with the PDAer in your life, and be adaptable with the rest.

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Adaptability can also mean being flexible in your approach to support. Different strategies may work well in some situations but not others. Learn which is which, and be prepared to try new things.

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Seek accommodations

If you experience PDA, inform others of your needs when it feels safe for you to do so. Be flexible in your approach to your day-to-day activities like working, and explore different ways to approach them that reduce demands placed on you.

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Manage anxiety

In addition to managing demands, managing anxiety is crucial. Know what works best to de-escalate your anxiety, and identify any other factors that may be driving it, like sensory sensitivity or sensory overload. If you are supporting a PDA individual in distress, make sure to remain calm so as not to make the situation even more stressful.

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Plan ahead

It’s always best to think through support during calm moments. PDAers can make a plan in advance, and loved ones can collaborate with them on the plan. Learn what forms of support they benefit from and which ones are not helpful. Each person is unique, and support plans should reflect individual needs and preferences.

If you are struggling with demand avoidance, Prosper Health can help. Prosper Health’s therapists are neurodiversity-affirming and experienced in supporting autistic adults’ mental health. They recognize the inherent strengths that autistic and PDA individuals have and can help you with support strategies to manage and prevent the anxiety that comes with demands. By working with demand avoidance, not against it, therapy with Prosper Health can help you achieve your goals for your long-term well-being.