What exactly is PDA, or Pathological Demand Avoidance? How can we have conversations that are useful to people who identify with PDA, and that mesh with their experiences and support needs? We talked with Dr. Deborah Budding, an assessing neuropsychologist who specializes in sensorimotor and other underpinnings of neurodevelopmental and psychiatric conditions, and who has PDA conversations with clients and professionals alike.
Thinking Person’s Guide to Autism (TPGA): It’s really kind of you to take this call, because I think it’s about time we had a thoughtful conversation about PDA, or “Pathological Demand Avoidance,” here at Thinking Person’s Guide to Autism.
Dr. Deborah Budding: Well, yes. And I think some people are tweaking the term as Pervasive Demand for Autonomy.
TPGA: Pervasive Demand for Autonomy. Okay. I hadn’t heard that.
Dr. Budding: I’ve heard different people use different terms. And I’ve been having this conversation for a while now because I see a lot of the complicated cases in my neck of the woods [Southern California] and people I work with like to keep up on the latest lingo, and started using that terminology—which really started in England. It immediately got my hackles up, and I was like, “No.”
We can get into the stuff that goes into people being identified as having this thing, but it falls into the same pot for me as the term “selective mutism,” which implies that a person voluntarily chooses to stop speaking. What I’ve seen people use, and what I use in such circumstances is “situational mutism,” where the circumstances are such that a person loses access to language, for whatever reason.
I do think when we’re working with a variety of communities that we try to be thoughtful about the language we use, especially since a lot of the ABA-light organizations have superficially taken up the language of neurodiversity. [laughs] I came across a website somebody sent me recently that said, “We treat all kinds of neurodiversity.”
TPGA: [sarcastically] All kinds.
Dr. Budding: I do think it’s important to at least think about how we talk about things. My problem with the term “Pathological Demand Avoidance,” as I talked about with my colleague, Gwen Palafox, who specializes in transition planning for people with disabilities: Say, if you have an IEP and you’re graduating from high school, and then the floor falls out from underneath you.
Gwen likes to work with families to try finding ways to effectively support people with their support needs, to be more independent in whatever way that can be done, in adaptive and functioning. She called me and said, “I know you have problems with this term.” And yes, I do. I guested on her podcast to talk a bit about it, from the perspective of being a sensory motor-oriented person, by training.
A lot of my work is based on sort of nonconscious, habit-oriented processes and deep brain contributions to circuitry stuff, so, automatic habits and motor programming. Many things that get interpreted as being oppositional frequently come from a place where somebody has some trouble with motor programming.
Dana Johnson would be a really useful person, I think, for you to talk to you about this. She’s in Florida. She’s a Occupational Therapist. She does a lot of work with nonspeaking people and looking at augmentative and alternative communication methods. She works with Liz Torres.
TPGA: Ah. We’ve interviewed Dr. Torres.
Dr. Budding: Dana has a very strong focus on motor programming related issues and has some YouTube videos talking about rethinking aspects of what we would call impulsivity or resistance, as having trouble with initiating and stopping automatic motor programs. The thing about “Pathological Demand Avoidance” is that there are a lot of reasons why someone would resist doing something, and it’s often more complex than it appears on the surface.
Sometimes a person will be asked or told to do something, and they won’t do it. Partly, the stated reason is, “I don’t want to do it, because you told me to do it,” which is understandable. I am very much just a fan of “FU, I’m not going to,” but also it’s like my Real Social Skills t-shirt says, “Noncompliance is a social skill.”
I think that respecting a person’s autonomy is important, but then also, okay, drilling down a little bit and going. “All right. Are you saying that you’ve been asked to do that, or that you’re asking yourself to do it? Is it within your typical behavioral, “repertoire?” Is it a set of movements or actions that you’re used to doing and that feel fluid to you, or is it requiring some planning steps that you may or may not have the energy for at that moment?” Does all that make sense?
TPGA: Yes, absolutely. Whether the person is conscious of the processes or not.
Dr. Budding: Exactly. If it’s something that is an automatic habit that you can generally do pretty fluidly, then it’s often easier to do, except there’s a difference between self-generated movements and ones that are in response to outside demand. It’s like the difference between throwing a ball and catching a ball.
TPGA: Absolutely, or giving a hug and receiving a hug.
Dr. Budding: Exactly. Oh, absolutely. I know tons of people who are like, “I don’t like hugging,” but it’s not exactly true because they like giving hugs. It’s just they don’t like somebody just coming up and giving them one.
A lot of this has to do with where the impetus for the action comes from. Rather than terming it, inherently pathological, and again—I’ve known people who identify themselves as PDA. My take is, “Whatever works for you. I’m not going to take your preferred language away from you.” Just like some people like to be referred to as a “person with autism” instead of autistic. I feel, “I can’t tell you can’t do that. That’s not my business.”
But I think in general, the larger conversation needs to be the way we continuously default to pathology in how we describe things.
TPGA: That’s fair. One of the reasons I really wanted to talk about this is because I do see a lot of people really identifying with the term PDA, and finding that it has a lot of use for them.
Dr. Budding: Yes.
TPGA: Again, I don’t have a problem with people finding terms that work for them. I just worry about using terms that are compounding stigma and not actually helping with self-identification, or not helping people understand what it means because too often if a person says, “Well, I have PDA,” then other people will say, “Oh, well, you’re just stubborn.” You know what I mean?
Dr. Budding: Right. I saw this amazing kid who was very ADHD (or had a hyperkinetic neurology depending on your preferred language), which was completely missed—which, that’s most of my practice—being described as stubborn and oppositional.
But my take is, sometimes it’s hard to get rolling with stuff. Also, sometimes you don’t want to do it. Why for neurodivergent people, that’s suddenly terrible when lots of people are like, “No, I don’t want to. I’m not going to,” right? “No.” Actually, one of my little nephews, very cute, my niece was trying to coerce him into doing some little thing that was going to get them in trouble. He just looked at her, he said, “No, thank you. No, thank you.” [laughs]
It ends up that language gets used in a way that I don’t enjoy.
Also, one of my longstanding frustrations in my field and in the larger arena is lack of proper training, in my view, from an evolutionary and adaptation-based stance, where we look at the brain being particularly important for movement as a primary thing, and that thinking is this nice secondary benefit that’s come along with it. Even though that’s still kind of the hot thing in neuroscience circles, it really hasn’t filtered down that much into clinical training. Also, in my experience, unless you decide you want to focus on pediatrics, you are not really trained in neurodevelopment.
Most clinical focus remains very cognitive, very top-down and cortical. But we have these whole giant brains with lots of areas of tissue and connections that are in turn deeply connected to our bodies. I think focusing only on consciously, cognitively driven ways of functioning is problematic in that a lot of folks have trouble accessing those things, especially if they have neurologies that are sensitive to perturbations or changes and enter fight-flight states easily.
When you’re in that fight/flight/freeze/fawn state, you can’t access those lovely breathing techniques and other cognitive strategies that people have taught you. Then somebody says, “Hey, do X, Y, or Z.” Again, depending on anybody’s state at any given time, that’s going to be more or less difficult to do.
Sometimes it’s just a matter of wording it differently and giving somebody time to process. Sometimes it’s thinking about, “Why am I asking this person to do this particular thing?” A lot of times we give commands to people without even thinking about why we’re doing it.
TPGA: Yes. Running on autopilot and thinking that other people can do autopilot as well.
Dr. Budding: Right, or do autopilot in the same way.
TPGA: Yes, exactly.
I was wondering, much of the talk I see about PDA relates not to external motivation or influences, but internal influences. As in, you know you’re supposed to do something and you just can’t do it. I see people identifying as PDA that way. I’m wondering what your take is on that, if that’s more a kind of neurodivergent inertia, or if it’s similar to the freezing that you described before, a variation on that?
Dr. Budding: Well, I think it varies, right? A colleague and I recently published a book chapter in a neuropsychology training handbook about executive function talking about one of the problems with current views of executive function as a very cognitively driven, top-down model. When actually, bottom-up, self-regulatory issues and sensory motor issues are extremely important.
Part of what goes into any person’s state at any given time has to do with their sensory being, and understanding their own sensory sensitivities. If you’re feeling flooded at any given moment on a sensory level from any source, that is going to contribute to getting into a flooded state. When you’re in a flooded state, it’s very hard to engage purposeful movements.
For me, speaking as somebody with a pretty strong ADHD neurology, I can struggle a lot with getting started on tasks. Even though I in part write for a living, generating reports. Sometimes it’s easier than others, right? Some of us, it helps to have an external thing, like a deadline or another external prompt saying, “Okay, you need to do this to get the ball rolling, the pump running.” Other times, I will tell you, other times, literally, I’ll be like, “I’m going to do this,” and then—remember the cartoon “Pingu”?
TPGA: Yes. God, yes, yes.
Dr. Budding: You know the little one where Pingu’s going, “Well, I’m not doing it”? [laughter] I literally have that meme on my phone, and I send it to friends. It’s like, “These are my tasks for today,” and then I send it.
I do think that normalizing not feeling like it, not feeling like you have spoons for it, not wanting to do it, should be normalized. Then figuring out how to go ahead and find ways to do it anyway if you decide it’s something you want to do. That often doesn’t get asked, is this something I want to do? For a lot of people who identify as having a PDA as part of their presentation, a lot of times it is something they want to do.
Dr. Budding: I think that’s the reason it gets viewed as pathological is because you know you want to do it, and yet you can’t, or you won’t.
TPGA: Then how can we help people in these states? At TPGA, like you said, we don’t care what language people use to talk about themselves, as long as long as they’re not dragging themselves down. I am not interested in language f***ery at all. Potato, potahto, you know?
Dr. Budding: I think the missing piece from my perspective—and again, this is very strongly my perspective—is that we’ve been continuing to miss or minimize the sensory motor perspective, and really making things purely cognitive, leading with cognitive, when I just think that’s not where it’s that.
I think self-regulation, arousal, sensory sensitivities, are all things that, back when I was trained, nobody cared about at all. To the best of my ability, I’m trying to educate people, but still, a lot of people still don’t really pay attention to it.
TPGA: This is really helpful, because people are saying, “Look, I just have PDA, there’s just nothing I can do about it.” I mean, I could understand how you would be in that space, but what we want to do is help people understand what, actually, is going on. Talk about the sensory-motor aspects, and other things that you can do, that might be more helpful for you.
Dr. Budding: Right. It’s not ideal to use heavily pathologizing language.
I do a lot of late identification and diagnosis, kids but also lots of teens and young adults. And mostly it’s because they’re pretty much low support needs people, and often mask pretty well, so they fell through the cracks. I have some parents who, when I say, “Oh, yes, your kid’s autistic,” and it’s not experienced as negative? They say, “Oh, we always wondered.” Those are the families I love.
But more often than not, the parents say, “But now, they’re just going to use it as an excuse,” right? Or, the kids will say, “I can’t do X, or Y because I’m ADHD or because I’m autistic.” I’m like, “One, why is that your assumption? Two, that’s an education thing. There may be things you can’t do or can’t do easily, let’s figure out how to support you doing what you can do, and work arounds and accommodations for things you can’t.”
I have severe ADHD, I have two kids with ADHD, and they said, “I can’t do X, or Y, or Z because of ADHD.” And I tell them, that’s not how this works. This is your wiring, this is neurology. This is your responsibility. This is not an excuse. We just need to help you learn how to work with the wiring you’ve got, and the body you’ve got, and the environment demands upon you. Disability is real, and it’s also in part contextual.”
We need to change the focus to one that’s broader and brings in the environment. A person in their body, in their environment, and including all of the stuff that goes into an environment in terms of intersectional stuff like culture, race, gender, religion, sexuality, all of those things come into play and have to be considered as part of the environment a person lives in. That’s internal as well as external because we absorb the environment.
TPGA: That makes sense.
Dr. Budding: Right? I recently gave a talk for the Thelma McMillan Center on considering neurodiversity in relation to trauma and addiction, which is something that people don’t think about often enough. In my field writ large, it doesn’t get enough consideration. From my perspective, using substances is often about self-regulation. So again, when I come back to demand avoidance, I want to know, “What are the demands”?
Also, younger people are much savvier than the previous generations. If you ask them to do something they’re like, “Wait, why are we doing this”?
TPGA: Yes. They’re less likely to say, “Okay, well you told me to do this, so I’m going to do this because this is what people do.”
Dr. Budding: Yes. I also bring it back to that concept of the people I see who generally have access to speech but can lose access to speech when stressed out. People go, “Oh, come on, you can talk.” It’s traumatizing to not be believed.
The people I see who have much more pervasive difficulty with communication, they often don’t get that kind of second-guessing, because people know they have trouble communicating, although many get pressure to use talking when they’d rather type.
But there are folks who have “high verbal IQs,” and supposedly great vocabularies—yet when they’re under stress, their access to speech goes. And then it’s outwardly experienced as refusal behavior. People will say, “oh, you’re giving me the silent treatment,” as opposed to recognizing that they are in fight-flight mode and can’t access speech in that moment.
I don’t really care, in the long run, what terminology people want to use. Again, people I know who use PDA as a shorthand have started replacing the pathological piece with a different word, and there’s tons of different ones that people can use. So I mainly object to the term pathological, but I also feel like it’s not being looked at in a way that is sufficiently grounded in environmental and sensorimotor stuff.
TPGA: Yes, all of this makes a lot of sense.
Dr. Budding: I think it’s really important and it’s important conversation, and I don’t want to rain on the parade of people who feel like PDA is an important part of their identity. I’m not going to take away a person’s main identity focus, however, can we find some nuance in here, because “pathology” in our society has a negative valence to it.
TPGA: Oh, of course, it does.
Dr. Budding: I think there are perfectly good reasons for somebody to not want to engage in something, especially if it’s in the context of an inherently dehumanizing set of circumstances.
TPGA: Yes. I don’t know if you read Roy Richard Grinker’s book, Nobody’s Normal, but he talks about this, too, in terms of when a mental state becomes pathologized, as opposed to perceived as being innate, as or possibly environmental. When people think some folks are just “born crazy,” there is less stigma about that. As opposed to when society perceives mental illness or neurodivergence as something that happened to someone, and then there’s more stigma.
Dr. Budding: This is my problem with all the eugenicist shit going around with genetic studies, because again, I do think genetics are interesting and important.
TPGA: They are fascinating!
Dr. Budding: They are, and they’re real. Genetics is a thing. Environment is too. The thing about genetics that is interesting has always been the intersection between genetics and environment. This is why I love Paul Cisek’s work so much. I appreciate that he does not focus on developmental differences per se. He’s very much an academic neuroscientist, just looking at human cognition, but looking at it, literally, from the start of being a single-celled animal.
His idea is that it’s always an organism-environment interaction, constantly. This is how this stuff works. Trying to pin it simply on one versus the other. Even if you have a very specific genetic disorder, which a lot of folks I see have microdeletions, microduplications, et cetera, there’s still interaction with the environment that informs how development unfolds.
Dr. Budding: The people who try to come really hard down on one side or the other, I’m like, “This is just to get you a chair named after you at a university, right?”
TPGA: This is why I get a little bit testy when people talk about whether the social model or medical model of disability is more valid, because most of the disability and autistic advocates I listen to say that we need both.
Dr. Budding: Right. We need all of it, and properly used.
It makes me think of this one adorable kid who I saw after he was massively misunderstood previously, which makes me ragey. I can always tell when somebody does an assessment and they don’t like somebody. I can see it in how the language is used. It’s very rare for me to not just adore the people I see, honestly. So I’m looking at this kid, with type one diabetes that has to have constant monitoring and who is also ADHD, autistic, and hilarious.
There were adults making demands and misinterpreting behaviors as just being jerky. The school was making demands that he be “on” all the time at school and didn’t understand why he was “oppositional.” When I got to know him, I was able to say to them, “No, this is not the situation. Let him engage with his fan fiction thing between classes.”
I just think the expectations, and especially in the academic environment, things have gotten worse and not better, sadly. Especially with kids who have IEPs, this is a bigger and bigger issue. This is when they bring in the ABA people because, oh, the kid has PDA, they’re not doing what they’re told to do, so we’re going to bring in somebody who’s going to make them do it. This upsets me the most when I see this happen.
TPGA: If we’re going to go back to what you said about sensory issues and flooding, that’s just going to make everything worse.
Dr. Budding: Of course. It’s also going to train them to hide it.
TPGA: If they get broken down, then it’ll train them to be compliant in a way that is antithetical to their nature and will make mental health worse.
Dr. Budding: Exactly, and contribute to being abused later.
TPGA: Exactly. It’s just so complicated, again, with going back to the people who are finding other people who identify as having PDA on TikTok and being so empowered. They are saying, “This is me. This is who I am.” I do not want to take that away. But I also want to talk about, “If you’re going to think about yourself in these terms, then let’s think about what tools are going to work for you.”
Dr. Budding: I think of it sometimes a little bit in how different communities have taken over terminology like “queer.” Deciding to take a term back and own it in a way that isn’t dictated from the outside.
Dr. Budding: I think that part of this happens because people are not operating out of a sensory-motor perspective, or an interaction with the environment perspective. To me, those perspectives just make sense. But trying to get people to use that approach has been difficult. My book that I co-wrote in 2008, recommending changing training, and people were like, “Oh, that’s such a great book, but is it possible?” Again, I keep getting pushbacks. I don’t understand why this is hard.
That may just be my ADHD hyperfocus. I find all of this fascinating and important, so it doesn’t seem hard to me. I also think that people don’t talk about it enough. My goal is to see this talked about.
This is one of the reasons I adore your website so much and send people to you because I know that you guys care about being current without absorbing the bullshit that the academic and research community is putting out there. There’s so much of it. The fact that we’ve got more pushback coming is great. We still have a long way to go because the medical model, pathologizing people are still largely running the show.
Dr. Budding: I have the great privilege of being an elder person in the field. People know that I will yell at them, and I do, and I’m fine with it. A lot of younger people coming up don’t have that. They don’t feel safe in their academic environment going, “Wait a second, this is outdated. The stuff that you’re teaching us to do and the research protocols you’re having us do are outdated.” What junior researcher or student is going to feel safe doing that? Especially if they’re not majority population folks?
TPGA: Yes, there’s a real issue with that.
Dr. Budding: There is.
TPGA: Especially voices not being supported or uplifting.
Dr. Budding: I just feel like people who have access to speaking, up need to. That’s always been my stance.
TPGA: Ours as well. Another thing: I have three neurodivergent kids, and even though I do not have a formal diagnosis of anything, we know that neurodivergence generally doesn’t usually come from the ether.
Dr. Budding: No. Genetics is the same.
Dr. Budding: In terms of language, for instance, I just use ADHD, but I know tons of people who find it an offensive term, and want to use “hyperkinetic disorder” or whatever. I’m totally fine with that. I don’t care what you call me, just give me my Ritalin. [chuckles] I can see both sides of language usage. A lot of it is also generationally based.
When I was growing up, one of the reasons my ADHD was never identified was that I was one of these “twice-exceptional kids.” Everyone was like, “Oh, you with your deep thoughts. Can’t pay attention to day-to-day details.” [laughs] When I was growing up, only boys had ADHD, and they supposedly went to jail. But the thing is, brains don’t care about the DSM.
Dr. Budding: The DSM, just like gender, is made up. People get offended when I say that, but it’s true. There are real differences in people’s neurological makeups and styles. Those are real, but the impact it has on their day-to-day function, is also culturally driven to some extent.
TPGA: 100% agreed.
Dr. Budding: I think part of the challenge we’re having—and I think PDA is in the midst of it—is that we’re in a period of time where people are struggling to figure out how to name things, what to call things, how to understand things. In the concept of large-scale neurodiversity, how do we understand different ways of being that are not neurotypical? What do we call them? How do we understand them? How do we deal with them?
TPGA: Do you see any trends in the genders of the people who are using the term PDA?
Dr. Budding: I haven’t paid close attention to it. I see a lot of trans and otherwise non-gender-conforming people in my practice. I’ve had a lot of people ask me about body, gender, and links between neurodivergence and gender identity. Some of these questions I have felt as attempts to pathologize gender stuff. I’m not down with that.
What I will say is that, in my experience, neurodivergent people tend to be just inherently very deeply thoughtful about everything. They will have questions about gender among other things, and will just interrogate those things inherently, and in a way that is not considered within a neuro-normatively focused arena. I had somebody say, “Why, when I was 12, I never thought about gender.” Sure, but you never thought to think about it though.
TPGA: It also wasn’t really part of the conversation.
Dr. Budding: It wasn’t part of the conversation. In terms of gender identification with people who identify with PDA, I haven’t noticed any particular trend, but I also don’t see many people who identify with that term per se. I mostly just see it on TikTok and hear about it and have friends and colleagues say, “We were afraid to talk with you about this because we thought you’d yell at us.” But I say, “I’m not going to yell at you. Use whatever freaking term you want to see. I just want you to think about it.” [laughs]
TPGA: I just want to say, if you were to encounter somebody, a PDA, say on TikTok or on another online avenue and they’re saying, “Well, I’m just looking for tools. I just need something to help me manage my set of traits, whatever you wanna call those. Do you think it would be fair to say, “Pay attention to your environment”?
Dr. Budding: Pay attention to your environment, also pay attention to sensory function. I’ve increasingly focused on sensory function in the assessments I do, because I see a lot of teenagers and adults who’ve been diagnosed with everything under the sun *except* identified with autism. [laughs]
Also there are the kids who are super into Doctor Internet, and they tell me, “Well, I just did my research, and I’ve got my 15-page long list of all my diagnoses.” And my response is often, “Wouldn’t autism be more simple?”
Dr. Budding: The thing that people don’t pay enough attention to is that sensory piece, and especially interoception. I’ve seen kids who’ve been referred for eating disorder treatment, and nobody ever asked them whether they recognize when they were hungry, recognize when they were full? The sensory piece to me is so central to everything and then also sensory-motor, the motor programming piece.There are also motility issues, as hypermobility and Ehlers-Danlos, which are common among neurodivergent people, can impact digestion.
I think the more we shift that focus and find people who will help with that, the better things will go. It also helps to figure out what their sensory triggers are, and then to do things to preserve their regulation—in the context of whatever sensory stimuli are overwhelming. Sometimes there can be competing sensory issues, which is tricky. Whether it’s too much of one thing, or just too much of a bunch of things. It helps to get things back down to a fairly regulated state.
With ADHD people, we use body doubling a lot, as a means of getting stuff done. Meaning, “I can’t get this done by myself, but if you sit with me and do your thing, then we can chat here and there, and it gives me a way to get things done.” People call that “parallel play” [laughs] in other environments.
I think finding people who get you from a sensory motor perspective, and then talking with them about coming up with strategies that work with your individual makeup is going to be the most effective. Saying, “Oh, I can’t do that because I’m PDA” is not as helpful, just as saying “They’re just PDA, so they won’t do it” doesn’t get us anywhere.
I’m not going to drive my very nearsighted self around without my glasses on and complain about getting pulled over. But what if I’m not allowed access to my glasses? What am I supposed to do? There’s a balance, right? Between taking responsibility for the way you’re wired to the extent you can, but not being punished for things that are just part of your inherent wiring.