Demand Avoidance in Autism and Eating Disorder Recovery

Demand avoidance can be one of the most misunderstood aspects of autism, especially when it intersects with eating disorders. What may seem like defiance or resistance is often an attempt to preserve autonomy and regain a sense of safety. In this post, I’ll be breaking down what Pathological Demand Avoidance (PDA) really is, how it impacts eating behaviors, and why reframing our approach can make all the difference in supporting recovery.

What is Demand Avoidance?

Traditionally, PDA stands for Pathological Demand Avoidance and can be defined as a pattern of behavior in which people go to extremes to ignore or avoid anything they perceive as a demand. This can include requests from external sources such as work, school, or family members, but it often applies to internal demands as well. People with PDA may struggle to respond to their body’s needs, such as eating, sleeping, or attending to personal hygiene if they perceive these activities as tasks they “need” to do. They might even find it difficult to begin or complete tasks they genuinely want to do as soon as these desires feel like pressures.

Demand Avoidance and Food

For people with PDA, food being a human necessity can actually make eating itself feel like a demand. In turn, this can create resistance and avoidance surrounding anything that has to do with food. Especially if you add on the executive functioning demands that meal preparation requires – including meal planning, grocery shopping, cooking, the eating experience itself, not to mention the fact that you have to clean up afterwards! The amount of steps can feel so overwhelming that it seems “easier” to avoid food altogether.

Of course, depending on someone’s specific situation and specific eating disorder, demand avoidance will manifest differently. For me personally, my demand avoidance didn’t surface or become that prominent until I entered eating disorder treatment.

Autistic Traits and Eating Disorders

As I write in my memoir Rainbow Girl, I was a very picky eater growing up. I definitely loved food, but only the limited range of foods that I deemed acceptable. Anything else I would not touch. If someone suggested I try something else, I would dig my heels in the ground and swear that because they asked me to try it, I would most definitely NEVER try it!

But everything changed when I started learning about health and nutrition at the age of eleven. I so clearly remember having all these lists in my black and white composition notebook (you know the speckled ones, so many memories!). There were lists of “good” and “healthy” foods. There were lists of “bad” foods that were, thanks to my black and white thinking, therefore completely off limits. I learned that the “good” foods would apparently put my BMI within the healthy range (which ironically turned into the underweight range) and protected against heart disease (which again, ironically sent me into the hospital with a dangerously low heart rate). I learned that the “bad” foods were “bad” because they were so-called causes of diabetes, obesity, and everything else diet culture fear mongers us into believing.

My autistic brain took all of these recommendations very literally. Combine that with feeling existentially lost and completely misunderstood due to being undiagnosed autistic, and my purpose to become the “perfect healthy eater” practically fell in my lap. 

Being someone who’s always had quite a small frame, just a few pounds of weight loss was enough to land me in the pediatrician’s office just a few months later with the diagnoses of anorexia and depression. I go delve into the problem with these pathological labels in my group coaching program The Autistically ED-Free Academy, which leads me to a very important reframe around the term Pathological Demand Avoidance.

Demand Avoidance or Pervasive Drive for Autonomy?

The problem with pathological labels of any kind is that they’re judgments. And once we’ve placed a judgment, we’ve lost any possibility there is to be curious and to explore deeper than the surface. To give an example completely unrelated to food and exercise: imagine a wall. Now imagine that without me knowing it, said wall is a trap door. A trap door that led to freedom and abundance. Before you think this is airy fairy and woo-woo, just bear with me for the sake of the example. So I have this trap door that looks like a wall. As long as I judge and label what appears to be nothing more than a wall and claim to know that it’s nothing more than a wall, I will never be inclined to look closer and thus, discover that it’s actually a door. Moral of the story? We can only discover new experiences when we choose to be curious rather than judge.

When it comes to supporting someone with PDA, it’s crucial we adopt this curiosity mindset. We must ask questions. The first question that’s going to guide us into a completely new term for PDA is this: Instead of being defiant, resistant, or manipulative, how could the “PDA behavior” be a form of safety seeking? This is a powerful question because in the end, humans are wired for safety. In turn, this curiosity lens leads us to replace the term Pathological Demand Avoidance with the term Pervasive Drive for Autonomy. And while I’d love to take credit for this revolutionary name change, I believe it’s important to give credit where credit is due – and that is to neurodivergent educator Tomlin Wilding who coined the term on their blog back in 2020.

Why Language Matters for PDA

Why is changing the language we use to describe PDA so important? Going back to our curiosity vs. judgment theme – which falls under the overarching umbrella of living label free – calling someone pathological helps us in absolutely no way. Why? Because we then have this false belief that by labeling and judging them, we know everything about them.

The problem with judging (or claiming to know anything, for that matter) is that you completely close yourself off to acquiring more knowledge – knowledge that perhaps, is significantly more meaningful than what you are able to see from the outset. Just think again about the trap door example above, or that incredible Aristotle quote: “The more you know, the more you realize you don’t know.”

If we as a society really knew what PDA was (or taking it a step further: if we knew what anorexia was, or what autism was, or what any of these labels were at their core) we wouldn’t even need the labels, let alone have professionals calling us “too complex,” “a hopeless case,” or that we’re just going to have to “manage” whatever this label is for the rest of our lives! No, the only reason we’re stamped with more judgments is because the curiosity path isn’t being taken.

Understanding PDA in Autism and Eating Disorders

Now that we’ve established that PDA is NOT a form of resistance, defiance, or manipulation, but rather, a pervasive drive for autonomy and personal freedom, we can look at eating disorder behaviors – or as I like to call, adaptive eating behaviors – through this autonomy lens. An excellent example is refusing to follow the treatment team’s recommendations. As I was saying before, my PDA didn’t surface until I was in eating disorder treatment. That’s when we started doing Family Based Therapy (FBT) as I discussed in this post.

Suddenly, I was no longer allowed to make my own food. I was no longer able to play my sports. I had to be watched like a freaking hawk every second of every day to ensure that I wouldn’t secretly go against the treatment team’s recommendations. 

Just like FBT *in theory* sounds like a fantastic concept, taking away the autonomy of someone with an eating disorder seems like the most logical approach. However, it’s often the most harmful treatment approach for PDAers because...we have a heightened need for autonomy. As soon as the autonomy gets taken away in the form of demands or expectations, we push back. And it’s this pushback that’s misunderstood in treatment.

Demand Avoidance in Eating Disorder Treatment

I was tossed in and out of ED treatment centers for years, acquiring evermore labels from “treatment-resistant” to “non-compliant” to “incredibly defiant,” among many others. At the age of fifteen, I was even told “I just had to accept the fact that I was never going to get better” because treatment had been so unsuccessful. As you can see, instead of the professionals being curious and wondering why treatment wasn’t working and asking themselves (and me) how to adapt treatment to align with the way my mind works, they labeled. They judged. And if you’re reading to this, I’m pretty sure you’ve experienced that those labels and judgments only made everything worse.

So then how on Earth do we make everything BETTER? I know I sound like a broken record, but we start with curiosity rather than judgment. In a practical sense, this starts with shifting the language we use.

PDA-Affirming Strategies to Support Eating Disorder Recovery

One of the most effective shifts we can make is replacing the word need with the word want. Why? Because the word need often feels like a demand, triggering that pervasive drive for autonomy. For someone with PDA, being told they need to eat lunch, rest, or even attend therapy might feel like an external expectation they must resist to preserve their sense of freedom. On the other hand, using want communicates autonomy and choice, which fosters collaboration. For example, instead of saying, “You need to eat now,” you could say, “What do you think your body might want right now? Do you want something bland or something with lots of textures and flavors?”

This brings me to another key strategy: offering options. Choices create a sense of control, which is essential for someone with a heightened need for autonomy. So instead of making a blanket statement like, “You have to eat a snack,” try presenting two or three options: “Would you like crackers with cheese or an apple with peanut butter?” Or even better, involve them in the process: “Do you want to pick out a snack and I prepare it, or would you like to make it together?” Notice how this small shift transforms a demand into an invitation for collaboration, allowing them to feel empowered rather than cornered. It is important to remember that you don’t want to have too many options, as this can lead to analysis paralysis, which, in turn, can lead to meltdowns and shutdowns.

Which leads me to the final strategy I’ll be sharing with you today, and that is to remember that curiosity also means checking in with how the language and strategies you’re using feel to the person on the receiving end. What works for one individual might not work for another, so ask for feedback! You might ask: “Does it help when I offer choices, or would you prefer I just make suggestions?” This step is especially important for building trust, which we know is essential when it comes to rebuilding relationships after traumatic experiences and treatments.

Creating Collaboration Between Autistic People and Eating Disorder Treatment Team

By shifting from language that implies expectations or demands to language that fosters collaboration and autonomy, we can begin to dismantle the resistance that comes with PDA and create an environment where an individual feels safe enough to pursue recovery. This isn’t about finding the perfect script; it’s about showing up with curiosity, compassion, and a willingness to adapt. Recovery for someone with PDA, like for anyone, starts with feeling seen, heard, and respected – which is rooted in the way we communicate with each other.

If you want more insights and strategies on supporting either yourself or a loved one through eating disorder recovery in a neurodiversity-affirming way, I invite you to join me in the Autistically ED-Free Academy. Through live weekly coaching calls, a private community of people who genuinely get you, and Q&A sessions where you get to bring all of your curiosity, we will embark on an empowering healing journey together. Learn more here!