12/05/2026
Long post. Important writing on PDA.
I hear: "I wanted to do it. But when you asked, my [brain/body] wouldn't let me".
I love the concept "epistemic humility" within the context of the therapy room.
Google ai definition: "Epistemic humility is the intellectual virtue of recognizing that your knowledge is incomplete, provisional, and subject to error. It is the practice of "knowing what you don't know," allowing for openness to new evidence, diverse perspectives, and the possibility that your beliefs may be wrong."
I'll add the link to me trying to understand PDA, and other PANS/ basal-ganglia-related things from a neuroscience perspective using Claude (ai):
https://www.facebook.com/share/p/18RpsPv4gX/
britapsych.com
Another day, another longform post.
You can read here, or click the link below to read directly from my substack.
-----------
There is a particular pressure placed on people who speak publicly about PDA - Pathological demand avoidance (or whatever variation of words assigned to this abbreviation, because there are now many). It is not the ordinary pressure that comes with sharing an opinion, or the vulnerability that comes with speaking from personal experience. It is something more exacting and more exhausting: the expectation that every statement about PDA must be defended with perfect science before it can be treated as legitimate.
Those of us who speak from lived experience are often expected to qualify ourselves endlessly, to anticipate every possible objection, and to present our lives in a form that satisfies people who may not live this experience, may not work with PDA families, and may not have any meaningful proximity to the reality they are critiquing.
This expectation is not neutral, or harmless. It does not create safer or more accurate conversations. More often, it creates fear and hypervigilance - particularly in people who already live with significantly fragile nervous systems and residual trauma. It creates a culture in which PDAers, parents, carers, educators, and practitioners learn to speak carefully, cautiously, and defensively, because they know their words may be pulled apart by people waiting to correct them.
For years, I have watched this happen across neurodivergent communities. A person speaks about PDA from the inside, or from years of supporting families, and almost immediately the conversation is redirected away from what has been lived and toward whether the person has satisfied someone else’s preferred evidentiary standard.
The science on PDA is still developing. I know that. I am not pretending otherwise. There is no conclusive, universally accepted scientific account of PDA that settles every question. There are debates about terminology, classification, diagnostic validity, overlap with autism, overlap with trauma and ADHD, comparisons to ODD; and arguments around the best way to understand demand avoidance. I am not afraid of that complexity, and I am not arguing against science. What I am objecting to is the way the incompleteness of the science is being weaponised against people whose lives are directly shaped by what we are calling PDA.
There is a significant difference between saying, “The research is still emerging, so let’s stay thoughtful,” and saying, “Because the research is not conclusive, your lived experience is unreliable.” The first position leaves room for humility. The second becomes a form of dismissal dressed up as rigour. It is one thing to ask careful questions about what PDA is, how we understand it, and how we support people well. It is another thing entirely to use gaps in the literature as permission to dismantle the accounts of PDAers, parents, and families who are already living with enormous misunderstanding.
For a long time, that pressure changed the way I spoke. I did not stop understanding PDA. I did not stop living it. I did not stop seeing it in my children, in families, in education settings, in crisis work, and in the patterns that emerge when people are finally given language for experiences they have struggled to explain for years. But I did begin to shut down, and to edit myself. I began to anticipate criticism before it arrived. I softened things I knew to be true. I added disclaimers where I did not really want them. I accepted comments that did not sit right with me because I was trying to remain reasonable, open, careful, and safe. I became frightened of being disapproved of by those who make governing lived experience their full time position.
More than that, I actually became concerned that I might be doing harm simply by speaking about PDA in the way I knew it.
That fear did not come from nowhere. For around a decade, I have been exposed to repeated claims that PDA is only a trauma response, or that PDA is simply autism, or that PDA does not have enough science behind it to be spoken about in the way many of us speak about it. These claims are often presented as though they are inherently responsible, as though the person making them is protecting the community from misinformation. Yet the effect is not only intellectual. It lands in bodies, families, and it lands in people who have already spent years being told that what they are experiencing is not what they think it is or even worse, that it just isn’t real.
This is why I want to be very clear about the harm. When people who do not experience PDA speak over PDAers, they are not merely adding another perspective. When people hear parts of the PDA experience, decide that they relate to it, and then use that partial recognition to redefine PDA for everyone else, they are not simply contributing to nuance. When people say, “I relate to what you are describing, but I do not believe it is PDA; I think it is autism/trauma/inertia/executive functioning challenges,” and then use that position to undermine those of us who understand our experience differently, they are not protecting anyone. They are participating in a form of erasure.
Of course many PDAers are autistic. Of course autism matters here. Of course there is overlap. I am not interested in separating PDA from autism or even attaching it to autism in some simplistic way, nor am I interested in creating rigid identity borders that prevent people from exploring themselves. But “it is just autism” often functions less as clarification and more as collapse. Autism is already an extraordinarily broad category of human experience. Autistic people do not all relate to demands, autonomy, threat, masking, burnout, relationships, education, sensory experience, or survival in the same way. To say that PDA is “just autism” may sound tidy, but it often leaves families and individuals without the specificity they need to understand what is actually happening. Of course, in the same way, tying every single struggle to PDA is equally as problematic.
Specificity matters because responses are built from interpretation. If a child is understood as defiant, the response is likely to involve firmer boundaries, consequences, behavioural strategies, and pressure. If a child is understood as anxious, the response might be reassurance, gradual exposure, or emotional support. If a child is understood as traumatised, the response might focus on safety, attachment, and repair. If a child is understood as PDA, the response must take seriously the way demand, autonomy, threat, expectation, and nervous system survival interact. These distinctions matter because the wrong framework can escalate harm. Of course, I do believe that all people benefit from having their experience considered outside of the typical behavioural lens and approaches, and I’ve been writing and speaking about this for a decade.
The same is true of the claim that PDA is “just trauma.” Trauma is real, and many PDAers are traumatised. Many PDA families become traumatised through years of being misunderstood, judged, blamed, excluded, reported, shamed, and forced through systems that interpret distress as behaviour. Trauma absolutely matters. But it is deeply harmful to reduce PDA to trauma, particularly when that reduction sends professionals and bystanders looking for parental failure, hidden damage, or an origin story that explains the child away. When PDA is treated as nothing more than trauma, families can be pushed back into suspicion and blame. The question becomes, “What happened to this child?” or, worse, “What have these parents done?” rather than, “What does this nervous system need in order to feel safe enough to function?”
PDA may look like trauma because both involve survival responses. A PDAer whose autonomy feels threatened may fight, flee, freeze, fawn, negotiate, control, collapse, avoid, distract, or dissociate. A traumatised person may do the same. Similarity, however, is not sameness. The fact that two experiences share visible features does not mean one can be reduced to the other.
Many families understand trauma. Many have done the work of reducing threat, changing environments, repairing relationships, and supporting nervous system safety. Yet the PDA pattern remains. It remains in the child who desperately wants to do the thing and cannot or the adult who experiences even self directed desire as a demand. It remains in the person whose body responds to ordinary expectations as though something essential is at stake.
This is where much of the public conversation about PDA becomes dangerously superficial.
People hear “demand avoidance” and assume they understand it. They imagine someone who does not like being told what to do, or someone who resists authority, or someone who prefers control. But PDA is not simply disliking demands. It is not ordinary resistance, laziness, stubbornness, manipulation, or opposition. It is not a personality quirk. It is not a convenient explanation for poor behaviour. For many people, it is a disabling nervous system experience that can interfere with the most basic parts of being alive: eating, sleeping, washing, communicating, leaving the house, attending appointments, sustaining relationships, accessing education, engaging with work, or doing things the person genuinely wants to do.
That last point is crucial. PDA is not only avoidance of what is unwanted. It can be the loss of access to what is wanted. It can be the child who wants to see a friend but cannot tolerate the demand of getting ready. It can be the adult who wants to reply to a message but feels the body shut down as soon as the expectation appears. It can be the person who wants to care for themselves but cannot move toward the task once it becomes visible as a demand.
This is not freedom. It is not indulgence. It is not a person getting their own way. It is often profoundly painful, humiliating, isolating, and misunderstood. I know this first hand.
I know the shame, guilt, terror of failing or being misunderstood. I know the punitive measures, the behavioural modification approaches, the self loathing, the suicidality as a child. I know how it is to miss out on life, to immerse myself in drugs and alcohol in attempts to not only soothe my distress but bypass my threat responses in order to participate.
Misinformation about PDA matters so much. I agree that there is misinformation. I have seen PDA described poorly, simplistically, and inaccurately.
I actually don’t relate to ‘pervasive drive for autonomy’ or ‘pathological demand avoidance’ because they reduce an entire picture down to symptomology or characteristics. But I use Pathological Demand Avoidance because that’s what people use when they want to learn more.
I have seen people so often use the language without understanding the depth of the experience. I have seen demand avoidance flattened into preference, identity, anxiety, trauma, or general autistic overwhelm. This can often be because demand avoidance isn’t one thing - it comes with many experiences and demand avoidance is not the whole picture.
I have seen families given advice that is too vague, too romanticised, or too disconnected from the seriousness of their circumstances. But misinformation does not only come from people who believe PDA is real. It also comes from those who are determined to disprove it.
It is misinformation and so incredibly insulting to families to imply that PDA informed approaches are simply permissive parenting. It is misinformation to suggest that families are choosing a trendy label because they do not want to set boundaries. It is misinformation to collapse every PDA account into trauma. It is misinformation to say “it is just autism” as though that statement resolves anything.
It is misinformation to treat the lack of conclusive science as proof that PDAers are misinterpreting themselves. It is misinformation to speak with certainty from a distance while dismissing the people who are closest to the reality. (Yep, I used repetitive sentences there and no, I don’t have AI write my pieces - I’ve been writing this way for years).
What’s even more difficult is the risk of families presenting to professionals as terrified of their own children and this being interpreted as the issue. A complete picture has been missed - a history of families living through attempts in isolation, with shaming and criticism, confusion and incredible distress to support and understand a significantly heightened, chronically distressed child who communicates this by using their body. Behaviour. Because behaviour is the language of children. A parent approaching supporting their child with fear, uncertainty and lack of confidence is usually the end result after EVERYTHING that went before it; not merely a misguided form of parenting or a starting point.
There are people who appear committed to monitoring PDA content, correcting PDA language, and challenging PDA lived experience wherever they find it. I know that sounds strong, but I have watched it happen for years. The same arguments appear again and again. The same tone of detached authority appears. The same insistence that the science is not good enough appears. The same implication appears: that if a PDAer or parent cannot support their words with the right academic evidence, their contribution is suspect.
Increasingly, I have also seen people use AI to strengthen this kind of critique. People who do not have the skills to interpret the data they claim to be working from in their arguments, they take posts, lived experience accounts, or existing PDA research, put them into ChatGPT, ask why the content is problematic, and then paste the response into comment sections as though they have produced a meaningful analysis. There is something deeply unsettling about that. It is not genuine engagement. It is not listening. It is outsourcing disbelief to a machine and then using the result against people who are speaking about their lives. It allows people to sound measured, informed, and authoritative while participating in something that is, in practice, profoundly dehumanising.
The deeper problem is that lived experience is being treated as though it is a temporary placeholder until science arrives. That is not how knowledge works, and it is certainly not how liberatory movements have ever worked. Lived experience is not a soft, sentimental, inferior form of knowledge. It is not always complete, and it is not beyond question, but it is knowledge. It is the knowledge of our bodies, families, communities, histories, and repeated patterns. It is the knowledge that emerges when thousands of people describe the same thing before institutions have developed adequate language for it.
Science does not become better by ignoring lived experience. Science becomes better when lived experience informs the questions being asked. Many of the things now discussed in relation to autism, disability, chronic illness, trauma, and neurodivergence were spoken about by people with lived experience long before they were formally recognised.
Autistic people, disabled people, psychiatric survivors, parents, carers, and human rights advocates have named patterns for decades that later became acceptable to discuss in professional spaces. By the time institutions call something a revelation, communities have often already been living with the knowledge for years.
This is one of the reasons the current treatment of PDAers feels so backwards. We should know better by now.
Have we forgotten the impact of early research into autism? Refrigerator Mothers, anyone? Cold, aloof parents influencing autistic characteristics, anyone?
The neurodiversity movement was formed to honour lived experience. It challenges the idea that professionals, institutions, and diagnostic frameworks are the only legitimate authorities on neurodivergent lives. It recognises that people are experts in their own experiences, even when their language does not fit neatly into existing categories. Yet in conversations about PDA, I often see people within neurodivergent spaces reproducing the same hierarchies the movement was meant to challenge.
I see so many backsteps. Professionals using their credentials to speak over lived experience, and using their own neurodivergence to justify this.
We have wanted for so long for autistic people to be in positions of engaging in research, support and creating much needed change. But we also see so many neurodivergent professionals doing the same thing that was done for years - speaking over, shutting down, using research and terminology to weaponise against lived experience.
How can we claim to stand for neurodiversity while telling PDAers that their lived experience is not what they say it is because science has not yet confirmed it to someone else’s satisfaction?
How can we honour Mad Pride, psychiatric survivor movements, disability justice, and autistic self advocacy while also insisting that people must wait for institutional validation before they speak with confidence about their own lives?
How can we criticise pathologising systems and then use the absence of approval from those same systems as a reason to disbelieve each other?
This contradiction has consequences. It makes neurodivergent communities feel less safe. It makes words like neurodiversity and neurodivergence feel less meaningful for people who came to those words hoping to find recognition, belonging and community rather than another hierarchy of credibility.
It also sends a very clear message to psychiatric survivors and others whose lives have been harmed by institutional authority: even here, your experience may be discredited if it cannot be made acceptable to people who know how to speak the language of science.
I am not interested in anti-intellectualism. I do not want communities built on unchecked claims, certainty without reflection, or refusal to engage with evidence. But I am equally uninterested in a version of intellectualism that treats university degrees, clinical titles, and published research as inherently superior to the knowledge that comes from living, parenting, supporting, teaching, and working on the ground. A person can be neurodivergent and still speak over other neurodivergent people. A person can identify with the characteristics of PDA and still misunderstand PDA. A person can be a psychologist and still lack proximity to PDA family crisis. A person can have a degree and still use that degree to dismiss realities they have not had to face.
For more than twenty five years, I have worked in education, family support, childhood and behavioural support, and community settings. I have been an early childhood educator, and a classroom teacher. I have parented PDAers for twenty eight years. I’ve been a PDAer for 47 years. I have spent thousands of hours supporting families in crisis, including families raising PDA children and families trying to understand PDA adults. I have written letters and reports. I have worked with educators, daycare centres, paediatricians, and child protection systems. I have seen what happens when families are judged from the outside by people who do not understand the level of threat, exhaustion, distress, and complexity inside the home.
And I am still learning.
But, proximity matters. It does not make me infallible, and it does not mean every word I say should go unquestioned. But I am deeply wary of any person who has not been on the ground with PDAers, has not supported families in real time, has not sat in the meetings, has not spoken with the schools, has not seen the crisis behind closed doors, and has not had to help families navigate systems that are actively misreading them dismissing the people who have.
One of the most painful parts of this work is watching families be blamed for the very adaptations that are keeping them alive. In my podcast episode “You Are Not Alone,” I spoke about the image of a child in water, struggling against a current while everyone on the shore tells them to swim like the other children. The child is panicking, exhausted, and being pulled away, but the people watching keep calling out instructions as though the problem is effort or attitude. They tell the child to calm down, to copy the others, to try harder, to use the skills they have supposedly been taught. No one throws a rope. No one offers a life jacket. No one asks whether this child can swim in the same way as the others, or whether the current is different where this child is struggling.
Eventually, when the child can no longer keep going, the attention turns to the parents. Why did they not teach the child properly? Why did they allow this to happen? Why are they not setting boundaries? Why are they not making the child swim? That is what happens to PDA families all the time. A child is drowning in expectations they cannot meet, and instead of asking what kind of support might create safety, the system asks why the family has failed to produce compliance.
The questions families are asked are often the wrong questions. Why is the child not at school? Why are they gaming at night? Why are they sleeping during the day? Why are they not eating properly? Why are they refusing basic care? Why are they speaking to their parents that way? Why are the parents allowing it? Why are there not firmer consequences? These questions may sound reasonable from the outside, but they can become dangerous when they are asked without understanding the nervous system reality underneath.
A PDAer in crisis does not need more people shouting instructions from the safety of the shore, having never struggled in the water - particularly in refusal to offer a lifeline in the very least. They need someone to understand that what looks like refusal may be incapacity, what looks like control may be fear, and what looks like a lack of discipline may be a family making the least harmful choices available in circumstances no one else has understood.
This does not mean there are no boundaries, no responsibilities, no relational repair, or no need for support. It does not mean harm does not matter. It does not mean every family response is automatically right. What it means is that we cannot support people accurately when we are misreading the problem.
If a child’s nervous system is in survival, then increasing pressure will not build capacity; it will destroy what little capacity remains. If a family is already in crisis, judgement will not produce change; it will push them further into isolation.
If a PDAer is unable to access life in the way others expect, then demanding proof of legitimacy before offering support is not ethical. It is cruelty with a professional vocabulary.
I sat in sessions offering supervision to professionals who were so rigidly adherent to pathology and diagnostics, they were not willing to work with the child in front of them. “If they’re not PDA and I get this wrong, then what if I offer the wrong advice and make things worse?”
Yes, I hear this and I understand the real concerns. I also believe that offering a child who is in distress (this may not always be visible, particularly with PDAers who do not feel their vulnerability is safe to show) relational care, rest, accommodations is something we do for all humans. When will we move away from believing that offering such care will result in permanent disability? We are so deeply conditioned to place time limits on care, recovery, healing.
There are no perfect solutions for PDA. There is no perfect therapy, no perfect school plan, no perfect parenting script, no professional who can resolve every complexity, and no single framework that can be applied neatly to every family. What helps is often relational, flexible, creative, and deeply individualised. It involves safety, trust, autonomy, nervous system understanding, reduction of threat, and a willingness to think outside the usual systems of behaviour, reward, punishment, and compliance. And again, I believe these are approaches meant for all of us, PDA or not.
However, this kind of support does not always look impressive from the outside. Sometimes it looks like lowering demands, stepping back, allowing rest. Sometimes it looks like letting go of prioritising attendance, hygiene, productivity, or social acceptability over survival. It’s confronting, messy, non linear and cannot be measured neatly or checked off in little boxes.
It is HUMAN.
These approaches are easily misunderstood by people who are not living the reality. They may see a parent who is not forcing school attendance and call it refusal (they do). They may see a family no longer battling over sleep, food, or showers and call it permissiveness or even neglect (they do). They may see a child being given what is considered unusual levels of flexibility and assume the parents are afraid of their child. They may see an adult unable to meet basic expectations and assume irresponsibility. But families living within PDA crisis are often making decisions inside conditions of impossible pressure. They are not choosing between ideal and non-ideal options. They are choosing between harms.
This is why it is so destructive when outsiders use science, or the lack of science, to undermine lived experience.
The families I have worked with are not suffering because they lack criticism. They are not suffering because not enough people have told them PDA is controversial. They are not suffering because they need another person to remind them that the evidence base is incomplete.
They are suffering because they lack safety, recognition, practical support, and professionals who understand the realities of PDA beyond the surface.
It is problematic and harmful to govern lived experience content to make it fit our own experience. If someone does not relate to my content, they do not have to use it. If they understand their own experience through autism, trauma, ADHD, anxiety, burnout, or another framework, they are free to do so. If they do not identify with PDA, they do not have to. But their lack of recognition is not evidence against my recognition. Their framework is not automatically more accurate than mine. Their discomfort with PDA does not give them authority over PDAers.
This is especially important in communities where people are still trying to find language for themselves. Not everyone who relates to PDA content is PDA. Some people may relate to demand avoidance because of trauma, executive dysfunction, autistic burnout, sensory overwhelm, anxiety, depression, school trauma, or other experiences.
Those experiences, and those people deserve language too. But it is possible to honour that complexity without erasing PDA. It is possible to say, “I relate to parts of this, but I understand myself differently,” without using that statement to invalidate people who do understand themselves as PDA.
The problem begins when people treat their own partial recognition as the measure of the whole. They see one part of PDA, decide it is better explained by something else, and then use that conclusion to challenge the entire construct. That is not nuance. It is overreach.
PDA cannot be understood by extracting one feature, such as demand avoidance, and interpreting it in isolation. It has to be understood through patterns, intensity, pervasiveness, nervous system response, loss of access, relational context, autonomy, threat, and the lived reality of people whose lives are shaped by it.
The ongoing correction, dismissal, and monitoring of PDA speech has harmed many. It has made so many second guess the way they speak about their lives. It has made them cautious in places where they once felt clear. It has made them wonder whether honesty would be punished.
That is not what healthy accountability does. That is what surveillance does.
There is a difference between being open to learning and being forced into a permanent posture of defensiveness. I am open to learning. I am open to complexity. I am open to better research, better language, better frameworks, and better ways of supporting PDAers and families. I am not open to having my lived experience treated as unreliable unless it is constantly backed by scientific data. I am not open to defending my identity, my family, my professional history, and my community work every time someone decides the science is not good enough. I am not open to turning every reflection into a literature review before it is allowed to exist.
I know the science. But I speak largely from lived experience and I make this clear. When I am speaking from professional experience, I am clear about that too. But I will not accept the idea that lived experience is only valuable when science has already validated it. That is not how knowledge develops, and it is not how justice has ever moved forward.
The history of advocacy might make us more humble than this. There are things people are currently describing as new insights into autism that have existed for decades in lived experience writing, community knowledge, family advocacy, and human rights work. There are conversations now entering professional spaces that autistic people and their allies were having long before those ideas became institutionally acceptable. Yet because community knowledge is so often devalued, each generation is made to rediscover what earlier advocates already knew.
We lose history when we only value information after it has been academically endorsed.
I often wonder if many speaking about autism today know about the history of autism advocacy. Many people using the language of neurodiversity do not appear to understand the political and cultural roots of the movement. Many people who benefit from lived experience knowledge still reproduce the same hierarchies that once dismissed that knowledge. If our only drive is to look at scientific research and data on neurodivergence, without understanding the communities, histories, and human beings behind it, then we need to ask whether our position is actually helpful or harmful. It moves significantly outside of the bounds of what the neurodiversity movement and paradigm stands for.
Science matters, but it is not the only way humans come to know what is true and it is not separate from power. It is shaped by what researchers choose to study, who gets funded, whose experiences are considered measurable, whose language is taken seriously, and whose suffering is made visible. To point this out is not to reject science. It is to insist that science be held within a wider ethical frame. When science is used to deepen understanding, it can be liberating. When it is used to discredit people who are already marginalised, it becomes another tool of control.
My own work is with PDAers and with families who are living the consequences of being misunderstood. It is with parents who have been told they are permissive when they are trying to keep their children safe. It is with children who have been called defiant when they are terrified. It is with adults who have spent years believing they were lazy, broken, difficult, manipulative, or morally flawed because no one understood their relationship to demand, autonomy, threat, and survival. It is with educators who want to do better but need frameworks that actually match the children in front of them. It is with families who need someone to say, with honesty and steadiness, that they are not alone.
I’m not saying that PDAers should never be questioned, or that lived experience should become a shield against all critique. The point is that critique without proximity can become violence. Scientific uncertainty should not be used to humiliate, silence, or discredit people living the reality under discussion. Families in crisis need support more than they need correction. The neurodiversity movement cannot claim to honour lived experience while dismissing PDAers whenever their accounts exceed the current evidence base.
I know what PDA is in my life. I know what I have seen in my children. I know what I have witnessed in families over thousands of hours of support. I know what I have seen in schools, homes, daycare centres, professional meetings, child protection contexts, and conversations with exhausted parents who are terrified of being judged. I know enough to say that the current science does not contain the whole truth of what is happening. That does not make science irrelevant. It means the story is not finished and the picture is not complete.
Until the story is finished, and even after it develops further, PDAers must not be required to disappear into silence. Families must not be left alone because their reality is too complicated for existing frameworks. Lived experience must not be treated as an inconvenience to be managed until research catches up.
The people closest to PDA must be part of shaping the knowledge around PDA, not merely subjects to be studied or voices to be corrected.
https://kristyforbes.substack.com/p/when-science-is-used-to-silence
![Long post. Important writing on PDA.I hear: "I wanted to do it. But when you asked, my [brain/body] wouldn't let me".I l...](https://img5.findhealthclinics.com/539/661/909994895396615.jpg)
