When Demands Hurt: Understanding PDA

Article Summary

• When Demands Feel Like Threats: Discover what it's like to be a PDAer

• The Power of Autonomy: Explore the unique challenges and hidden strengths of PDA

• Inside the PDA Mind: Understand how demand avoidance impacts the lives of PDAers

• Building a PDA-Affirming World: Learn how to support and empower PDA individuals

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PDA is increasingly recognized as a unique neurotype within the neurodiversity movement. Greater understanding fosters a neuroinclusive world, and benefits especially any (perhaps unrecognized?) PDAers. In this post, we'll explore demand avoidance and how it relates to PDA, then discuss ways to support yourself or a loved one with PDA.

What is PDA?

Let's start with the acronym PDA, which stands for Pathological Demand Avoidance or Pervasive Drive for Autonomy. Many PDAers prefer the latter, emphasizing their inherent need for autonomy.

Outwardly, PDA might look like avoidance, resistance, or stubbornness. But 11-year-old PDAer Tally, author of Can You See Me?, describes it differently: "Demand avoidance makes it sound like I'm avoiding things on purpose, but I literally have no choice [italics mine]. So I prefer to call it demand anxiety." Another PDAer Isaac Russell shares, "It's difficult to explain... It's the most frustrating thing to have the capacity to understand what's happening and that I should be able to do these things, but the ability isn't there." (I encourage you to watch his video. He does a brilliant job explaining his experience of PDA)

PDA: A Deeper Dive

PDA differs from demand avoidance in several key ways. Demand avoidance is a common human experience, which at times can be debilitating, while PDA is a neurotype (like autism or ADHD). In other words PDA reflects unique brain wiring and shares traits with autism and/or ADHD. PDA is generally considered a subtype of autism, although there is a lively debate around this currently.

PDAers have an intense need for autonomy and control, perceiving any request as a demand, and thus a threat. This could be something they want to do (e.g., write music), something seemingly simple to other people (e.g., brushing teeth), or something they have done every day until asked to do it (e.g., tying their shoes). It's the demand itself, not the content, that triggers a sense of threat to autonomy PDAers. PDAer Tony describes it as "similar to having claustrophobia. The anxiety keeps rising steadily until it becomes a non-negotiable, panic-driven need to flee from the source of the demand.”

PDAers often use social strategies to reduce demands, another way PDA differs from demand avoidance. These strategies can include distraction, procrastination, pretend play, self-incapacitation, attempting to control others, or masking. If you're a PDAer, you probably understand why you do this: things feel so intense inside that you will do anything to feel better!. If you are not a PDAer, you may find yourself feeling judgmental right now: "self-incapacitate? to get out of tying your shoes? I just don't get it!"  (For more on the differences, see this article by Dr. Neff)

Below is a handy-dandy chart to explain the differences between the PDA neurotype and demand avoidance.

Understanding the PDA Perspective

For us non-PDAers, let's truly try to grasp the PDA experience. Imagine being asked to do something that fills you with absolute dread, like sky diving or public speaking. Find something that terrifies you. Now, imagine someone completely dismissing your fear, saying, "Why are you freaking out? It's no big deal!" Like me, you might feel invalidated, unseen, and unheard because your internal reality is being completely ignored.

Comic illustration highlights the stigma around mental illness by comparing it to physical illness, showing how responses to mental health can be insensitive and unrealistic.

Now, imagine you were forced to do this thing that terrifies you, day after day after day. (This is the experience of those having to attend school, which 70% of PDAers struggle to attend). You might start to feel trapped and desperate. You might try to distract, pretend you're okay (mask), or even resort to lying – "Oh, my stomach hurts today, there's no way I could go skydiving!" - to escape the situation.

The way you feel towards skydiving, public speaking, or your brand of terrifying, is how PDAers experience internal and external demands. Requests non-PDAers often consider “simple” can trigger intense anxiety and a feeling of being controlled. To support a PDAer, it's crucial to recognize and validate this experience. As PDAer Riko puts it, "PDA is like facing your phobias every waking moment! For me, it's like being in a malfunctioning robot. Every button I press has an opposite reaction to my intentions."

PDAer Strengths

It's important to highlight the strengths that often accompany PDA. These strengths can be powerful assets in the right environment, and recognizing them is crucial for fostering self-esteem and creating opportunities for PDA individuals to thrive.

Here are some common strengths associated with PDA:

• Creativity and Innovation: PDAers often possess a strong creative streak and a knack for thinking outside the box. Their drive for autonomy can lead to innovative solutions and unique perspectives.

• Problem-Solving Skills: When motivated and engaged, PDAers can be excellent problem-solvers. Their ability to think differently and challenge conventional approaches can lead to innovative solutions.

• Strong Sense of Justice and Fairness: PDAers often have a heightened sense of justice and fairness. They are sensitive to power dynamics and may be passionate about advocating for themselves and others.

• Emotional Intelligence: While PDA can sometimes present challenges in emotional regulation, many PDAers have a deep understanding of emotions and are highly empathetic.

• Resilience and Determination: Navigating a world that often doesn't understand their needs can foster resilience and determination in PDA individuals.

When we celebrate the strengths of PDA, we open up a world of possibilities. Imagine a society that truly values these unique qualities: the creativity, the problem-solving abilities, the fierce sense of justice, and the deep empathy. PDA isn't a deficit; it's a different way of being, a different way of seeing the world. 

The Inner World of Demand Avoidance

We all, especially neurodivergent folks, experience demand avoidance. It's a normal human experience, likely amplified by the increasing demands of modern society. Demand avoidance is essentially an inability to complete tasks for oneself or others at certain times.

It's incredibly frustrating to be unable to do something you want to do. I'm not a PDAer, but I experience demand avoidance, especially with creative tasks. Multiple "parts" emerge and block me. A "freeze" part fears the metaphorical blank page and the overwhelming freedom it represents. A "submit" part feels hopeless, which manifests as feeling unmotivated. Then, a "flight" part valiantly steps in to protect me from all these uncomfortable emotions by urging me to just avoid the task entirely. For me, this often brings temporary relief but long-term sadness as I miss out on building meaning and joy in my life. (To learn more about"parts," look up the "structural dissociation model" or read Healing the Fragmented Selves of Trauma Survivors by Janina Fisher.)

To understand the underlying causes of demand avoidance, check out Dr. Neff's insightful demand avoidance iceberg.

Self-Compassion is Key

When struggling with demand avoidance, whether you're a PDAer or not, self-compassion is essential. Pushing harder often backfires, increasing anxiety and making tasks feel even more impossible. Self-compassion, on the other hand, can soothe anxiety and shame, allowing you to either move on or approach the task later with a clearer mind.

Compassion and understanding from others are also crucial. When someone is struggling with demand avoidance, offering support instead of blame helps reduce anxiety and shame, creating space for them to move forward.

Burnout and the Importance of Support

When PDAers face too many demands, they can experience burnout. The longer they've masked their demand avoidance, the more intense and prolonged the burnout becomes.

Burnout manifests as profound exhaustion, feeling disconnected from oneself (and potentially becoming cynical or indifferent), and a diminished sense of accomplishment.

Burnout can be incredibly difficult, often marked by a lack of motivation to care for oneself, engage in enjoyable activities, or connect with loved ones. It can range from uncomfortable to downright agonizing.

This is why understanding and support is so vital for PDAers. It's crucial to remember that PDA isn't something to be "fixed" or "cured." PDAers need understanding, acceptance, and accommodations that honor their needs and strengths. Without these, they often face constant external pressure, leading to chronic internal activation and, eventually, burnout.

Supporting Yourself as a PDAer

So, if you're a PDAer, what can you do to support yourself? The following are what PDAers have said has helped them the most.

1. Learn more about PDA!: The more you understand, the more you can identify with the PDA experience, understand yourself, and support yourself with the things that are difficult (see the end of this blog post for a list of resources).

2. Recognize Demands: Start to recognize what does and doesn't feel like a demand to your nervous system so you can shift your environment and/or ask those around you to communicate differently. 

3. Study your nervous system: Begin to understand how your nervous system avoids things (e.g., in the ways mentioned above: procrastination, masking, self-incapacitation), so you can develop more conscious and self-compassionate strategies for navigating demands.
   

And there are so many more ways to support yourself! See the infographic below for more, and here is a wonderful list of ways you can support yourself as a PDAer.

Creating a More Supportive World for PDA

If your loved one, client, or student is a PDAer, here is a short list of things you can do to support them (again, see the infographic below and follow the links for many more resources!) 

1. “Pick your battles.": Is eating the vegetables really that important tonight? 

2. Be aware of phrasing: Choose how you phrase things to reduce demands. Instead of "Hey sweetie, could you tie your shoes?" you can do one of many things: simply place the shoes in front of them without talking, use indirect language – "I wonder if those shoes are ready for our adventure. What do you think?" – or get playful! – "Hey, wanna have a shoe-tying race? I bet I can tie mine faster!" 

3. Collaborate: Work together to create supportive environments or plans that minimize anxiety and promote a sense of agency. This might include co-creating flexible plans, honoring their need for control, and/or prioritizing emotional regulation.
   

Final Thoughts

Understanding PDA is crucial for creating a supportive and empowering environment. Those in support roles can help by learning more about PDA, recognizing PDAers unique needs and strengths, and adapting their communication and interactions to respect their autonomy and reduce demand pressure.

If you're a PDAer, remember that your need for autonomy is valid. With understanding and the right support, you can thrive. It is possible to navigate challenges, embrace your autonomy, and live a life filled with purpose, joy, and authentic expression.

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Ready to learn more or explore support? Check out the resources below, feel free to reach out to me, or find a provider on the PDA-affirming provider or educator lists. We're here to help.

Let's spread awareness and understanding! Share this post with anyone who might benefit, and feel free to leave a comment below with your thoughts and reflections. Together, we can create a more supportive world for PDAers.

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List of PDA-Affirming Resources

PDA Society - First neurodiversity-affirming website for learning about PDA and PDA resources for PDAers, families, and professionals. Based in UK.

PDA North America - North America specific site for PDA, includes great monthly webinars (both free and paid) for PDAers, families, and professionals. They recently released a free 10 page resource for anyone seeking to understand and support individuals with PDA.

Watch a Video with a teen autistic PDAer - This is a great way to understand what being a PDAer is like. She shares a lot about what does and doesn't work for her in therapy as well.

Low Demand Parenting by Amanda Diekman

This book is written by an autistic adult, parent coach and author in the neurodiversity space. Amanda talks from experience and teaches you how to identify what the big, tiny and invisible demands are for your own child and gives you the step-by-step instructions on how to drop them.

The Barred Academy: A Low Demand Neurodiversity-Affirming Private School - Located in Louisville, CO, “The Barred Academy is a specialized private school dedicated to providing a supportive, neurodiversity-affirming education for students with unique learning needs, including those with PDA. Through our personalized, student-centered approach, we create flexible, low-demand learning environments that foster trust, autonomy, and engagement. Our goal is to empower each student by respecting their individual needs and strengths while providing a safe and nurturing space for growth.”

About Lila Low-Beinart 

Lila is the founder of Divergent Paths Counseling, where she offers neurodiversity-affirming therapy and training. 

She specializes in working with autistic, ADHDer, and gifted/2e girls/women and gender expansive folxs, using contemplative, parts-work, and somatic approaches to support clients experiencing depression, executive dysfunction, trauma, and relationship difficulties.

Her specialized trainings for mental health providers go beyond professional development, challenging the 'trance of normal' to foster deeper compassion and more effective support for neurodivergent clients. She also provides tailored workshops and speaking engagements to help organizations create neurodivergent-friendly environments.

To learn more about Lila and her therapy offerings and trainings, visit her website at DivergentPathsCounseling.com.