Is it demand avoidance or PDA?
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[00:00:00] Oh, hello and welcome to In Tune Pathways, the podcast. This is the place where we explore autistic identity, culture and family lifestyle. I'm your host. I'm Kristy Forbes. I'm a late identified autistic woman. I'm an educator. I have ADHD and I am a PDA autistic. If you're not sure what PDA is, it stands for Pathological Demand Avoidance.
We'll get into that in future episodes. I'm also a parent of autistic children and my passion is shifting away from the medical disorder narrative and into a newer awareness and radical acceptance of the social model of disability. Thank you for joining me.[00:01:00]
All episodes of the In Tune Pathways podcast are recorded on Wurundjeri Country. The Wurundjeri and Woiwurrung people are the traditional custodians as part of the Kulin Nation. I pay my deepest respect to Elders past and present and at In Tune Pathways we are committed to the amplification of First Nation voices and decolonization in our work.
Sovereignty was never ceded. This country always was and always will be Aboriginal land.
Hi dee ho. Today I am going to do my best to touch on a question that I'm asked all of the time. I always have 25, 000 questions for every question I'm asked. So when I'm asked about specific types of neurodivergence, usually [00:02:00] PDA or autism, it's really hard to answer those questions because an example of one of those questions might be what does an autistic person do about sound sensitivity?
And what I hear is, what does a person do about sound sensitivity? Because even when we share neurobiologies or we have characteristics in common, we might have elements of our sensory profiling that might be similar or the same, we're still individuals. We're still people. And so, I always struggle to answer in general terms.
This is why I prefer to tell stories about my own life and share my own experience. But this often is translated as though I'm speaking for all people who share in my neurodivergence, and I'm not. So [00:03:00] I try and make that as clear as I can. I'm going to talk about my experience. That doesn't mean that I'm telling you about yourself or I'm telling parents and carers about their children or educators about their students. I am sharing stories about my own experience and you may hear elements of my story that might offer a framework or a template to build on for other people. The question, having said all of that, is what is the difference between demand avoidance and PDA?
This is a huge question to answer. It's huge because there are so many variations of what demand avoidance is, what it looks like, the origins, how long it lasts for, whether it's lifelong, [00:04:00] whether it's inherent, whether it is acquired. It, it's really challenging. So I've written a piece and I'm going to read it.
There is demand avoidance that everyone experiences for varying reasons across neurobiologies. That means it's not exclusive to neurodivergent people. Some of these are not wanting to put a load of laundry on because a person is tired, autistic inertia, Burnout, executive functioning challenges, as just a few examples.
There are so many variations of demand avoidance and this type will fluctuate, come and go, and may not be present from birth. PDA, or pathological demand avoidance, is more than demand avoidance. I know the terminology gives the impression that it's solely about demand avoidance and [00:05:00] the problematic nature of using terminology that is centered on behaviorism, that means that when we're looking at children, we notice the most obvious behavior and we usually use terminology that speaks exactly to the behavior. That is why we say pathological demand avoidance when we're talking about PDAs because Initially, we talking about children.
So then when we unpack that, it's really important for people to know that learning about PDA is crucial because it goes beyond demand avoidance. It is not just demand avoidance. I know, again, that the terminology gives the impression that it is solely about demand avoidance, but it is so much more. In psychology and psychiatry, when we focus on children, we tend to use terminology that [00:06:00] describes behavior. When we're talking about adults, we use terminology that describes experience. So we might say anxiety disorder. We're not talking about behavior, we're speaking about experience.
But when we speak about children, we say demand avoidance. Demand avoidance of the pathological or pervasive kind is being described by me today in sharing my experience. I've been PDA all my life. The threat of violence or harsh punishment while appearing at times to reduce my demand avoidance in childhood also strengthened my resolve for autonomy and I would take it from elsewhere as a form of compensation when giving up power.
Examples of this might be being forced to attend school and in turn restricting [00:07:00] food. It could be being Told I must go to bed and go to sleep at 7 p. m. And so I might develop a ritual or a practice similar to OCD. Often people will see these behaviors as separate and not associated. It's important to really think about this creatively.
It's crucial to understand the intersection of trauma and PDA and not to confuse them as the same thing. Even in the face of true danger, as a threat of non compliance, PDA meant that I would fight and resist. This predisposed me to abuse. Adults with a sinister need for control or power do not take kindly to a child that will not step down.
[00:08:00] My resistance as a child reinforced the rage that the adults around me would experience as a result of my non conformity and non compliance. And the resistance in me would be exacerbated by their drive, fueled by their rage. Over time, PDA managed my emotional and physical expression. I'd never, ever give anyone in a position of power who wielded it against me for their own gain, the satisfaction of knowing the impact they had on me.
I would not show tears. I would never show anger. Because That was mine and provided me the last strands of agency. I often see parents leaving comments on my posts about how they're so desperate that the only thing they have left is harsh punishment with their PDA children and that will only ever [00:09:00] result in panic and distress and often trauma. It destroys relationships and interferes with the development that is crucial to a healthy sense of self and identity in young people. It stunts emotional growth and personality development.
My PDA is something that begins with me. It's inherent. It's not something I developed. My memories span back to very early on, as young as two, maybe even before. I do remember being in my cot, in a bassinet, and being handed a bottle. And I recall very vividly my need for agency and the sense of distress and powerlessness I felt at being on my back and not being able to be upright, not being able to get out of bed. My memories definitely demonstrate that [00:10:00] I required exceptional amounts of autonomy and agency as an infant and as a toddler.
My PDA is not exclusive to being told what to do by others. It's not about not wanting to do hard things or not wanting to try things due to perfectionism, although the latter is often a feature. Any form of dysregulation is a threat, and my brain and body seek to avoid it completely. This isn't always something I'm aware of.
It could be that I go for a snack when I really want to be doing something else that requires my focus. It could be that suddenly my thoughts are scattered and I can't recall details to avoid doing the thing in front of me. This is frustrating for me, as there are many times that I want things from life and in that moment and in that span of time I'm unable to access it.
But that doesn't mean [00:11:00] that incapable or unable to access things forever. Again, there are many things I want from life that others do, though due to my sensitive and highly attuned nervous system, it often appears I don't want to, as opposed to I cannot. Things that bring me joy dysregulate me, and I struggle with self imposed demands. Alarm clocks, timers, exams and rewards, diets, any type of limitation or restriction is dysregulating. It's threatening. And most importantly, not always conscious or known to me. This is crucial for people to understand. I disappear from relationships or fall off the grid and retreat every now and then and my friends and those that know me know it's not personal. I'm taking a breather because relationships can be incredibly [00:12:00] dysregulating. I require more downtime than the average person and regular, larger processing periods. Human behavior, human beings, I find devastating at times, particularly in the comment sections of the internet and my nervous system needs a regular break. Everything I think, feel and do comes at a great cost to my health and well being. Even the things that bring me joy. A considerable amount of effort goes into caring for myself, as panic can be my default state otherwise. I do lots of writing, inner dialoguing,
internal family systems as a therapy help so, so much. Different types of therapy, movement, singing, dancing, laughing, talking with friends, time in water, and so much more. I know myself and I've been able to develop supports and tools for myself, but these [00:13:00] change all the time. They evolve with me as I evolve and grow as a human being.
I knew what I needed to both survive and thrive in adulthood and whatever was within my control and was accessible, I sought it out. I loathe being pitied. I find it incredibly disarming and destabilizing. The most important lessons I've learned have been experiential. Sometimes there's no choice. I've learned most things the hard way.
Lots of pain, grief, loss. And these are the natural consequences of navigating a life that is led by my own curiosity. Special treatment, declarative language, and any obvious approaches toward me are very challenging to sit with. I just want to be treated as anybody else would be. I take responsibility for my experiences [00:14:00] and regulating my triggers.
Often PDA prevents me from being able to ask for or accept support, but not always. People usually get this far with me when I try and describe my experience and they often make grand assumptions about the content of my character. They'll pathologize me. I've been called self serving. Or they'll often say, how is she going to survive the real world, completely overlooking the fact that I'm a 45 year old adult.
People, strangers on the internet, more often than not, will read a little bit about who I am and what my experience is and make comments like this because it's so abhorrent to them that I would lead a life that was intentional and self led from early childhood. When people ask how will I survive the real world, I need to say that I've survived [00:15:00] more than many people and I say this confidently.
I feel and think deeply. I suffer from the amount of empathy I feel. It is disabling. I can't argue against PDA being an autistic profile because I am an autistic person and I haven't experienced not being autistic and PDA.
I've been in community with thousands of families and individuals with varying experiences of PDA, because again, we're still individuals. And often we do tend to share similar values, humour. The humour is incredibly distinctive and other personal attributes. We also share very specific challenges, schools of thought and experiences, and this is culture. That right there is culture. When people ask me to tell them more about the other parts of [00:16:00] PDA, the parts that don't indicate distress, I find it challenging. And I guess I find it challenging in the same way that if I asked a person who considered themselves to be neurotypical, what are the great parts about being neurotypical?
I've never had a neurotypical person be able to answer me without drawing contrast to somebody who is not typical. When I've asked neurotypical people what's great about being who they are, they'll always answer by saying, I get to do things with ease. I get to not struggle with sound sensitivity. So they're drawing on the experiences of people unlike them, but there's no definitive response around why being neurotypical is great or what are the good parts about being neurotypical.
This is my normal. I don't have another experience to compare, [00:17:00] but my normal is far more than demand avoidance. When I've read any research on PDA reviewing earlier work, it often reads as demand avoidance to me as opposed to PDA. And so I can see how it's very quickly denied as an autistic profile and allocated to varying neurodivergent profiles.
And I'm not here to argue about that, but I am here to say that most of the research I've read speaks to demand avoidance as a characteristics rather than PDA as a neurobiology. There are also many that will argue that their children are ADHD and PDA. I can't argue that because I'm ADHD too. And I've noted an overlap of autism and ADHD in many PDA ers.
Should it be a completely separate form of neurodivergence? Hmm, maybe? I don't [00:18:00] know. There are many ADHD ers who are also unidentified autistics. We've come a long way, but we've got a long way to go in understanding neurodivergence. I see people speak about PDA as a trauma response. Avoidance and avoidant behaviors definitely can be trauma responses.
Demand avoidance can be an outcome of trauma. But PDA is not trauma. It's not the outcome of trauma. It co occurs, of course. A lifetime of not being believed, being misunderstood and accused of laziness, selfishness, lying can have that impact on a person when it begins in early childhood, of course, there's often going to be co occurring trauma. I didn't learn about PDA on the internet or in a book. The first time I'd heard of it was on a TV program with Libby Hill and other professionals and a [00:19:00] young boy was identified as PDA.
I was watching on and I recognized that he was autistic. It's kind of like a radar in the same way that those in the LGBTQIA plus community talk about gaydar. Autistic people have this too. Many forms of identity and culture have a radar for one another. We speak the same language of the heart. We don't know each other because we see disorder.
I saw this boy and I recognized that he was autistic, but then I watched these professionals speak about him as they identified him as PDA, pathologically demand avoidant. I balked, I laughed, and I said aloud to my husband, that boy's just like me, but a little bit different. I had to internalize a lot of what he's showing as a child, or find other ways to let it out.
But I didn't believe PDA was a thing because of my internalized ableism. [00:20:00] On seeing a psychologist for one of my children during an autism assessment, the psychologist pulled me aside and asked if I'd heard of PDA. I said I had. She said I might like to look into it. I said I had, and didn't think it fit my child at all.
She said she wasn't talking about my child. The truth is, there's so much we don't know. There is so much about human experience that we don't know. But I do know who I am, and how my neurobiology operates. I'm always learning. I'm always changing and growing. Whether I have an autistic profile of PDA, or I'm a PDA er, or I have PDA, I know who I am.
PDA is not the same as demand avoidance. It is pervasive and exists always. I work harder than hard to regulate because everything, [00:21:00] everything, is dysregulating. Relationships are hard because people are dysregulating.
Individuals and families want and need support. That is what matters most. Ultimately, anything I share that helps me as a PDA, I believe, is good for any human, not just neurodivergent people, not just PDAs, but it's about the individual.
I don't do generic frameworks and I advocate for responsive care for individuals. What works for me may not work for you. What low demand is for me may be chaos for you. PDA can be rough. It can be exceptionally rough in childhood. It's rough across the lifespan for many of us, of course. But childhood is when we have the most limited means of understanding and communicating our internal experiences.
And it's also when we have the least [00:22:00] agency. A lack of agency, a compromised autonomy, feels like a death sentence for a PDA er. We'll often notice PDA children will gravitate toward darker themes, characters on television, the villain as opposed to the hero. But what would you gravitate towards if the internalized experience you had wasn't offered as a framework in any other person around you?
And every way that you showed up was pathologized, dominated, and corrected. Adults often expect mindless compliance as a result of behaviorism. And so behavior is often obvious and exacerbated. I want to learn for myself. I want to follow where my curiosity takes me. I don't do well being taught. And it has nothing to do with authority or resistance to it.[00:23:00]
I do recognize social hierarchies. I just don't operate that way. I do respect social hierarchies because I respect other people. I'm just inclined to respect others based on who they are, how they show up, how they treat others, how they treat themselves, how they carry and use the power that they have, rather than the fact that they have it.
My work ethic, it's divergent. While PDA has an impact on my work, it can prevent me from showing up. I can be overcome with anxiety, and this isn't all the time. And I have tools and practices to support me through this. I have a business that works, and it works because of who I am inherently, honest, genuine.
How I treat others really matters. I truly care for and [00:24:00] know my clients, and this is because of my PDA, and never ever despite it. As a young person, there were periods I was situationally mute, with more of a freeze presentation. Tears often in place of anger, quick to shut down. And there were periods of a fight presentation, which landed me in all kinds of trouble.
The juvenile court system, as one example. The point is, it can change. There isn't just one typical presentation of PDA. People know my story, or parts of it. It isn't pretty. But I'm here to tell it. And that is a miracle. It's a testament to my determination. And my determination is a direct result of PDA.
That fight, that spirit, that strong spirit, that resistance. I am living the life that I need [00:25:00] and want. I'm university educated, and that came with a hefty price. Financially, energetically, time wise. I'm estranged from my family. A painful, isolating, hollow, difficult and healthy decision.
I mother my children in ways that see, hear and know them so that they never wonder if they're valued and loved. And I vehemently oppose disorder narratives. I don't ever want to be above or below anyone else. I want to be in community. In equity. People ask what a healthy PDA looks like, if what we've come to understand as PDA is a distressed experience. My youngest is a classic example for me. They are [00:26:00] regulated, kind, thoughtful, funny, so funny, and generous. They're gifted in their thinking and processing, highly creative and hilarious. An excellent performer, storyteller, and friend. And so incredibly principled and boundaried.
How is this different from any other person? It isn't. This is the point. The DSM? Any other form of criteria pathologizes behavior that is centered around a distressed or traumatized version of most forms of neurodivergence. If you spent time with my youngest, you may not notice their PDA. Other PDAs probably would because of that culture.
The average person, however, would pick it up the moment too many things are asked of my child. A shower, brushing hair and brushing teeth? Too much. [00:27:00] And most of us know what too much looks like in action. The most incredible parts of my child are not values that other adults would take kindly to. And that's the clencher.
That's where I attribute PDA to their goodness. Say something remotely discriminatory about anyone and my child will call it out. They'll hold you accountable. Not in a disrespectful way. Not in a demeaning or humiliating way, just an honest matter of fact way. In the same way they'll let me know, Mom, I don't like the way you're speaking to me..without rescinding.
That stuff doesn't go down well in a classroom or many other environments. Adults do not like to offer up the same vulnerability and humility they so readily expect of children with a side of punitive measure in the case of resistance. For those that ask, what is the treatment for PDA? I would [00:28:00] say that more work needs to be done toward understanding it.
More work needs to be done toward understanding neurodivergence as a whole, in contrast to presuming disorder, disease, or something being wrong with a person, especially when they don't comply with or assimilate to normative ideals. Yeah, PDA, whether we like it or not, is a sociopolitical identity. most forms of neurodivergence are.
I am as disordered as a person who is same sex attracted, Indigenous or female, meaning I am not disordered at all. This is central to my being and cannot be treated away. However, when my environment, people, places, and things is inclusive, presumes competence, and seeks to be curious over corrective of difference in others, I will thrive.
Unfortunately, most of society doesn't take too kindly to those of us who ask [00:29:00] others to take responsibility for their own wounds and projection, as much as the neurodivergent person often does. We put in so much heavy lifting for others to be comfortable and to keep ourselves safe. It is more often than not completely unseen, the efforts involved in masking, to keep oneself safe from the intolerance and exclusion of those who do not feed into a capitalist society. On the outside, had I not shared this written piece or read it out today on this podcast, you might meet me and not see my divergence. You may not know any different of me than what you see, an abled bodied adult with a business, a mortgage, and a license to drive.
Someone kind and generous, connected to others and responsive to the needs of those around me. I work, I pay [00:30:00] taxes, I'm kind. As long as someone appears to meet those criteria, they're generally seen as typical, presumed to be typical. The color of my skin lends me significant privilege. This is my experience only.
I cannot tell you about you or your partner or your child because PDA is a people, individuals, different stories. If you saw me on a hard day, on a day where I lament and grieve and long to turn back the clock and start over in a life
where I knew myself
and had not been exposed to the disdain and contempt of a society that often rejects and abandons those that are different, you might see that this is in fact society that requires treatment. [00:31:00] I am recovering and healing from my childhood. And I won't hide the emotion that is obvious when I speak of this.
In terms of support, as mentioned earlier, you'll find me in therapy, mostly for the trauma as a direct result of those who did not understand or accept me growing up, including myself. My supports are based around my goals for life, in what I need my life to be so that I'm able to thrive as opposed to survive.
It is focused on knowing myself, relationships. and recovery from trauma. If I'm not careful, my body will remind me of my limits as manifested by chronic illnesses such as chronic fatigue syndrome, ME, Crohn's, fibromyalgia, FND and others. These days I am pretty healthy and well. This is due to the level of [00:32:00] care I implement.
It's a huge effort to stay in my body and not dissociate and I am getting better at this. With the help of therapists who specialise in trauma. Again, PDA is not trauma. But trauma often accompanies a person who cannot bend to the will of others. Our own families often are the first offenders. Purely due to the shaming and blaming and harassment they receive in order to prepare us for the onslaught of a world unkind to those whose children are like me.
There is always the opportunity for repair work there. And I am one of those parents. A parent of four PDA ers, it took me a long time to understand. Many will ask, how could it take me so long to understand when I'm PDA myself? That is a direct outcome of internalized ableism and self rejection.
Our own families are also [00:33:00] often the first responders. They have immense power to heal us, but healing themselves is paramount. Loss, undoing, and unlearning. is a part of the pathway to being reconnected with our PDA children. And it's not for everyone. It asks a lot from us as adults. But it only asks a fraction of what PDA children experience every single day.
I don't suffer from PDA. I don't hate it. I don't wish I wasn't a PDA er. I wouldn't be who I am without it. And I like who I am. My resistance is more often than not a healthy, and rational response to a world embedded in insanity that instead projects the notion of insanity onto those who diverge from perceived normativity.
I live with intention. I live with integrity. [00:34:00] I think it's really important before rushing to ask ourselves, is my child a PDA er? Their experience actually might be age appropriate childhood development. And I say this not to offend or re injure those of our families who have tried everything only for it to not only fail but potentially exacerbate our children's behaviour where they are PDAers.
I say it because Childhood has been exceptionally pathologized over the last 10 years alone. It also might be that a child is experiencing demand avoidance, even extreme in response to ongoing pressures and demands that are completely unrealistic for any person to sustain, let alone a child.
I'm going to stop now. I'm asked [00:35:00] about demand avoidance from PDA often, and it's not easy to respond to. Because of the trauma associated with not being believed and being questioned over my experience. When I respond to these type of questions, my brain goes wild in a million different directions, trying to preempt all the arguments that I'll be faced with when I do share my experience.
But I'm going to be gentle with myself today and put that aside and share this response. And I want to thank the people that do ask questions. I also want you to know that Being a PDA er is not hopeless. It's one thing to come into the world with a set of attributes and values that are meaningful and intentional, that create and shape an incredible human being.
And it's another thing to enter into an [00:36:00] environment that pathologizes and harms that same individual. These are very different things and sometimes we really are called to rethink what it is that we're asking of human beings as a general rule of thumb today in modern society. If adults are unable to sustain the pressure that we place on human beings, imagine what the world is like for children right now.
Thanks for listening.