PDA
Musings on Autonomy
(If you’d prefer to listen, you can do so here)
Pathological Demand Avoidance
Persistent Drive for Autonomy
Perpetual Disownment of Autocracy?
(ever)Present Doom-laden Anxiety?
Powerful Description of Autism?
I keep hearing about Pathological Demand Avoidance (PDA), a term which seems to be accepted by health professionals in the UK but isn’t yet recognised in many other countries such as the US. From my reading, so far I can glean that it is sometimes seen as part of an autistic profile, at other times seen as a separate condition, at other times seen as not existing at all.
Break for my usual caveat: I am not an autism or neurodivergence expert and I am speaking here from my personal experience although of course my experience as a clinical psychologist can’t be separated from this. What I write about is true for me but cannot be true for all autistic people or even just people who relate to the concept of striving for autonomy (most of us? All of us?)
I’ve thought a lot about how PDA has shown up for me, as an autistic woman. It seems that PDA diagnoses are pretty evenly spread in girls and boys, while girls are still less likely to receive an Autism diagnosis. I felt pretty uncomfortable with the framing of PDA as a pathology until I read an article by Allison Moore, who takes an intersectional view of PDA. She suggests that demand ‘avoidance’ is simply a way of adapting to a too-demanding world. This coincided with a conversation with an Occupational Therapist, who saw the rise in PDA behaviours in children as a positive development. Because, she said ‘we need more people who will go against the status quo’. I’m going to add here that - since publishing this - I’ve had some brilliant feedback about the Moore article and want to also include this practice guidance from the PDA Society which clearly outlines the current thinking on what PDA is and how to assess for it, as well as specific strategies which support those with a PDA profile. AND let’s throw in this article about the prevalence of parent blame for those who have children with PDA and the impact of that. I’m adding this as I feel it’s important to recognise how frequently this shows up and how invalidated the PDA experience often is. Thanks to those who took the time to feed back.
I’m not going to try and unpick for myself what is autism, what is PDA, what is ADHD, what is what because I have realised (despite a long time trying) it’s impossible to find a straightforward answer. But I do recognise that I have a strong need for autonomy, and while a more ‘masking’ (aka socially acceptable/socially normative) part of me would do what was expected, I notice that there has often been another part of me who would do… the opposite. We could call it PDA, we could call it my inner rebel, we could also call it defiance which is how society would usually see that sort of thing. Although for me it was less a ‘Fuck you I won’t do what you tell me’ and more a ‘of course I’ll do what you tell me but then I’ll also quietly do that thing I think is best’.
The Inner Rebel?
Others have spoken about how frustrating this can be when the socially acceptable part wants to just be able to go along with things, while that inner rebel pushes back. Maisie Hill described how this shows up for her in her wonderful podcast on her own autistic experience - when she speaks about how her need for autonomy saw her sitting in her car on a blocked road after her partner had suggested she take another route, simply because she needed to not follow that instruction. Kristy Forbes, autism and neurodiversity support specialist, writes here about how demand avoidance is not a choice, but essentially a need to listen deeply to our own intuition. It can be tricky when one part of me really genuinely wants to do something, but as soon as it becomes an expectation I need to give myself time to actually do it. For example, I might have a trillion ideas about things to post on Instagram. I took August off, which I do every year. And because I was ‘meant’ to be back online in September, I just couldn’t bring myself to post. Now it’s October and my self-imposed block has lifted. You can imagine, I’m sure, how frustrating this can be - particularly as post-diagnosis these tendencies that used to be quite unconscious are becoming much more conscious (and obvious to me and those around me). But as I embrace my natural way of operating, I’m beginning to accept that this burst of inspiration followed by a resistance is just how I do things. Maybe an instinctive way of putting the brakes on my million flights of fancy. Luckily, this hasn’t applied to my clinical work, which for whatever reason I don’t see as a ‘demand’ - perhaps as it’s often supporting another person or people to understand and embrace their own autonomy, freedom and needs, or reflecting on their child as an autonomous and interesting human being. Possibly why I couldn’t stay in the National Health Service though, with the many different systems and constraints that came with working within it.
Perhaps another reason I stepped out of the NHS (despite being a firm believer in the need for a free, high quality national health service) is one of my musings about what PDA is and what those with a drive for autonomy offer society - a resistance to hierarchy and a strong desire for justice. Even, what I’ve called here, Perpetual Disownment of Autocracy.
Because isn’t there a need for ‘defiance’ right now? Don’t we, the citizens of the world, have quite a lot to push against? As systems become increasingly constraining, don’t we need to break those bonds and create something new? As PDA rates rise, so too do autocratic messages about, for example, UK immigration, voter suppression, and the death of democracy.
Let’s look just at children. At this moment in the UK, many children are not ‘fine in school’ and the rise in PDA diagnoses has coincided with a dramatic increase in children not attending school, and families looking (often desperately) for alternative provision. A recent report from the Education Select Committee found that 22.5% of pupils were persistently absent, which is around double the pre-pandemic rate. At the same time, the number of families electively home educating (though for many it may not feel like an elected choice, but more a necessity) has increased to around 1 in 100 children. The education system, having been underfunded for many years even pre-pandemic, is now inevitably struggling to meet the increased needs of children. Children who have been through the collective trauma of a pandemic, with stressed-out parents and the message that all other people and the world itself are not safe. And, over the pandemic, teachers and school support staff were generally undervalued, unappreciated and working in increasingly tough conditions - many of whom will be feeling the impact of that collective trauma too. So many children, especially those with more sensitive nervous systems, are expressing their distress at all of this in the only way they can - by saying (or showing) a big NO. Most 6, 10, 12, even 16 year olds can’t say ‘well the last few years have been a bit of a shitshow and I need to catch my breath and figure out how to exist in this really stressful world’ - but lots of their behaviour is telling us NO.
And you might think that adults are doing the same too. Noticed how irritable, tired and just burned out all the adults around you are at the moment? How prone everyone is to illness?
Neurodivergent folks are often referred to as the canaries in the coal mine. Those people who, due to their sensitivity, see the things that actually aren’t good for any of us. How do we get that message?
We’re not very good at listening to ourselves. Many of us have that part that is following along with the path they are ‘meant’ to, while the inner rebel is forging a different one. Sometimes unconsciously. Sometimes forced to through chronic illness or burnout. Occasionally with awareness.
If you tune in and really listen. What is your body saying NO to right now? What do we all need to say no to, so we can make room for a big, joyful, YES?
Resources
The PDA Society is far more informative than me and has some very useful and useable infographics https://www.pdasociety.org.uk/
This is an article about why PDA should not be pathologised/medicalised and is an adaptive coping strategy in a world that is difficult for you Moore, A. (2020). Pathological demand avoidance: What and who are being pathologised and in whose interests?. Global Studies of Childhood, 10(1), 39-52.
This is Newsom’s article on why PDA might be considered as a condition separate to Autism - read with care as it’s pretty ‘us and them’ in tone Newson, E. L. M. K., Le Marechal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595-600.
Thanks for the feedback from others on the Moore article, I’d also like to include:
The PDA Society (2022) Identifying & Assessing a PDA profile – Practice Guidance
This is an article on how frequently parents are blamed when their child with PDA is struggling - read with care as some of the examples are upsetting. Running, A & Jata-Hall, D (2022). Parental Blame and the PDA Profile of Autism.