Written by Stacey,

Pathological Demand Avoidance (PDA) is a specific autistic profile. It doesn’t officially exist – you won’t find it in either of the diagnostic manuals used to formally identify neurodivergence. Some NHS boards recognise and diagnose it, others don’t. Many people are misdiagnosed with Oppositional Defiance Disorder or not diagnosed with any form of neurodivergence at all. It really is a postcode lottery and, even within a postcode, it comes down to the knowledge and understanding of the individual professionals. For something that doesn’t officially exist, PDA has been known and talked about since the 1980s, and it’s becoming one of the current hot topics for medical professionals, neurodivergent influencers and neurodevelopmental coaches/trainers to talk about.

Unfortunately, a lot of them get it wrong, generally because they’re not PDAers themselves. It’s frequently still described by many as “an anxiety driven need for control” and much of the discussion focuses on the need to avoid demands and remain in control, which doesn’t help with the incredible nuances of PDA. Some people are trying to have PDA renamed to stand for Pervasive/Persistent Drive for Autonomy, but again that doesn’t fit the nuances experienced by many PDAers.

I believe that PDA can be best described as a nervous system disability, where the brain responds to expectations, loss of autonomy and inequality/unfairness with a trauma reaction. Trauma reactions include fight, flight, freeze, fawn, flop, funster and fib. PDA individuals may exhibit any of these when their nervous system is triggered. Sometimes there’s a clear default, but you’ll likely see a combination depending on situation, trigger, setting and audience.

I’ll break my definition down a little:

Expectations – anything, and I do mean anything that could have the words should, have, need, must etc attached to it is a trigger. Even something enjoyable. The fruit you love that has to be eaten before it goes off? Threat. Trauma reaction. When you look at all the expectations in modern society – how you “should” behave, what you “should” say, what you “must” do…it’s really important to start asking yourself “Why? Says who?” Is the world going to end if teeth aren’t brushed for 2 minutes twice a day? Is it really worth causing a meltdown that lasts hours and impacts the family for days because society thinks families should sit at a table to eat together?

Loss of autonomy – Someone putting themselves in a position of authority and expecting respect and deference is a trigger. Equally, when someone does something nice or helpful without asking first. Mum cooking a favourite meal when the PDAer wasn’t expecting it and hadn’t asked for it? Threat. Trauma reaction. Obviously, the entire school system of dictating a timetable, what should be learned, when it should be learned, how it should be learned, where the pupils are automatically seen by society as lesser humans than the staff etc etc, is loss of autonomy on a massive scale. At home it can be things like designating a bedtime, choosing furniture without consultation, moving things, baths, eating at the table. Anytime you ask or tell your child to do something, that’s a loss of autonomy that could lead to a trauma reaction.

Inequality – if someone puts themselves into a position of authority in any way, it’s a trigger. If information isn’t shared equally and the PDAer is left at any sort of disadvantage, it’s a trigger. Mum acting as a teacher and putting herself in a position ABOVE the child in terms of knowledge and understanding? Threat. Trauma reaction. A worksheet that doesn’t explain things in exactly the way the PDA child needs it to be written to understand it? Unfair! Threat. Trauma reaction. Any parent who has sat down with their PDAer and let slip they know the answers already to the workbook (or information in the documentary/cartoon) may suddenly understand why their child got upset.

PDA is like living with a highly sensitive balance scale. Anything that tips the balance (inequality/ unfairness, loss of autonomy, expectations) sets off a trauma reaction in the brain. The trauma reaction is the PDA brain’s way of trying to level/equalise the balance; a frantic tottering on a tightrope. A child shouting something hurtful because you told them they got an answer wrong – it’s the brain levelling the situation with a fight response. A child pulling a prank to delay the start of study time– it’s the brain levelling with a funster response. It may come across as deliberate and considered, but the logical brain is offline. The PDAer doesn’t have the capacity at that point in time to recognise what’s happening, let alone be able to do anything about it. With many years of experience, mindfulness and a thorough understanding of PDA, a PDAer still cannot stop their brain reacting with a trauma response, because that’s the disability. However, they might eventually be able to recognise the trauma response as it’s happening, understand that it means they were triggered by something, and THEN be able to get their logical brain back in operation.

PDAers also struggle more than the general autistic population with something known as Intolerance of Uncertainty. This means that a PDAer’s brain generally goes into trauma mode when faced with something they don’t know or something they might get wrong. When you can’t be certain of the outcome (whether that’s going to a new location, visiting somewhere that might be noisy, whether you’re going to get the answer right or wrong), a PDAers brain goes into protective mode to maintain a safe balance.

You’ll possibly see PDAers described as perfectionists with a “need to be right the whole time”. A PDAer isn’t striving for perfection per say; they’re striving to feel balanced, and you can’t feel balanced when you get something wrong and the person in front of you knows you got it wrong. Sometimes “good enough” really is good enough for a PDAer, so long as they are the one deciding the parameters of what is both good and enough and NOBODY else is judging them on their performance.

You can now hopefully see why formal education is hugely triggering to a PDAer. The expectations of taking in, processing, remembering and regurgitating information on demand, in a particular way, and being judged on it by someone who has placed themself into a position of authority over the PDAer…it’s not that a PDAer doesn’t want to learn; it’s just that formal education doesn’t take a nervous system disability that sees all of that as a threat into account.

And home educators face those same obstacles because that’s just how PDA is. Now you’re not just a parental authority figure but also a teaching authority figure, telling your child that they have to study xyz, judging them on their performance, and trying to teach them information you have access to (from your own education) but they don’t yet know (because that’s how learning works). That balance scale isn’t exactly feeling balanced, right?

Hopefully you can now understand a little more about WHY home education might be feeling hard for you and your child.

“But how do I get them to….” is probably the next phrase on your lips. “How do I get them to learn? How do I get them to put down their tech? How do I get them to stop lashing out when I ask them to pick a subject to look at? How do I get them to learn so the LA don’t send them back to school?”

I’m a PDAer and I’m home educating a PDAer, as well as being quite vocal in autistic and PDA online spaces. Every PDAer is different, and PDA is incredibly nuanced, so it’s impossible to say “this will work”. The short answer is that there’s no one way to collaborate with your child to help them survive and hopefully thrive in their life. There are some general tips I can give you though.

One thing that really helps is to remember that your child has a nervous system disability. That might sound obvious but PDAers are often seen as being neurotypical but naughty, just not trying hard enough, being overdramatic, being wilful etc.

Your child may be highly intelligent, but that doesn’t mean they’re not disabled. Intelligent people can have poor executive function and/or poor adaptive functioning, and don’t forget that PDAers are also autistic and experience sensory difficulties, processing difficulties and difficulties with language and communication. Autism is known as a dynamic disability – autistic people have fluctuating capacities and something manageable one day isn’t always manageable the next. Plus PDAers frequently have multiple neurodivergent diagnoses such as ADHD and DCD, hypermobility/EDS, POTS, MCAS, etc. Even if you’re autistic or otherwise neurodivergent yourself (sometimes especially in these cases), PDA is different. We cannot think ourselves out of experiencing trauma reactions.

“Oh, but they’ll have to get used to doing stuff they don’t like” is a common phrase uttered by people ignorant of how ableist they’re being. For the general population, brushing teeth doesn’t elicit a trauma response in their brain. PDAers should not have to become desensitised to trauma in order to be acceptable to society. It’s helpful to keep reminding yourself and everyone else questioning why you do things the way you do that your child has a nervous system disability that needs specific supports. In time your child may be able to do more than they can now – that’s how growing up works, even for PDAers – but it’s vital that developing life skills doesn’t come at the cost of severe burnout and loss of capacity later in life. Burying the trauma when young doesn’t make it go away, doesn’t help a PDAer learn how to effectively deal with their overwhelming feelings, and makes them incredibly vulnerable as an adult.

The most important thing to do with your PDA child is build a strong connection with them, and that generally means throwing out all previous parenting and home education advice. Unless it is literal life and death, forget societal expectations. When your child feels safe, connected and regulated, their nervous system will be less triggered by expectations, inequality and loss of autonomy, because they know that overall their safety and wellbeing is taken care of. For my family, that meant dropping the expectation to change clothes daily, to take a bath, to brush teeth more than once a day, to be in bed and asleep by a certain time, to be awake at a certain time of day, to participate in structured learning activities like Twinkl, to get outdoors for walks, to go on educational outings. Some of those were dropped permanently and others we’ve reached a point where the expectation is no longer felt as a threat, or I’ve recognised that the expectation isn’t life and death and if my child can’t fall asleep before midnight then it’s a bit daft to try insisting on it!

I’ve reached a point where I was able to sit down with my child and explain that my job is to provide them with a suitable education and that if I can’t prove it’s happening, the choice of being at home to learn will be taken away from us. And no, it’s not fair, and I don’t want that to happen either, so how can we work together to ensure learning is happening in a way that’s safe, fun and interesting. It’s a conversation I recommend having with your child. Expect a big trauma reaction – validate their feelings, give them time to get their logical brain back online which might take hours or days, and then work with them so they feel empowered in their learning. Genuinely give them options and choices, and the chance to work out for themselves how and what they feel is important to learn. A lot of “experts” recommend forced choices – two things, either of which you are happy with. For a PDAer that’s still likely to feel like a loss of autonomy and an unfair expectation. It’s OK to offer them resources that you like; just don’t push back if they are immediately rejected and leave them (literally) on the table as a future option. You will reach a point where your connection is strong enough, and your child’s baseline nervous system is stable and balanced enough, that once the initial trauma response has passed, they’ll come back to the table and be able to talk about what they think they can and can’t do.

Forget the Local Authority (not completely – never ignore their correspondence – but don’t let the thought of them drive your home education journey). Forget you have to write a report to explain your child’s education and why it’s suitable to them. We have a guide on our website that talks you through how to prepare that; it takes a couple of hours (maybe even 20 minutes once you know what you’re doing) once a year. For your PDA child, the bulk of your report is going to be describing PDA and the specific difficulties your child has in accessing information unknown to them (because unknown information feels unsafe and triggers avoidance, remember). Learning can be terrifying to a PDAer because it means that someone may try to put themselves in authority in order to provide the necessary information; the balance will be tipped very far out of their favour and the PDA brain will be triggered into a trauma reaction. So you explain that, and then you explain how you provide xyz resources and activities for your child to access when they feel able to.

Resources that work well for my child are cartoons and animated lessons that don’t really feel like lessons because they’re short and funny. They’re also able to take in information from audiobooks written in a storytelling style as well as comics and fun books (think Horrible Histories style). Anything too obviously “teachy” is a no go. Anything that requires me personally explaining information is a no go (because that puts me in a position above them). Animation, or videos explaining concepts without seeing a real life person, which my child can select for themselves in our scheduled “learning time” are becoming invaluable as we start to reach upper KS2 and into KS3/FS level understanding. And yes, we have scheduled “learning time” of about 4-5 hours a week, which we’ve been able to build up after the initial 2 years of trying lots of different things and working out what works. Some days it goes well; other days there’s just something putting the balance out and it doesn’t work…flexibility is key. Acknowledging that today it doesn’t feel right, it’s giving them big feelings and that’s understandable and OK. It’s still a full-time education suited to their needs, because they don’t stop taking in information just because it’s not our structured learning time. Last night my child was telling me all about OP art and the artist Bridget Riley, neither of which I’d ever heard of, but they’d read in a story book I got for them with no expectation they’d read. It might take months for my child to pick up some of the books I’ve bought, but as they’re starting to enjoy more of them, they’re starting to trust I’m choosing the right books for them and now it might be only hours or days before the book is tested out.

A PDAer will always find learning difficult because of their neurology and will find it traumatising to admit they’re struggling with anything (because that puts them at a disadvantage, which triggers a trauma reaction). Give your child plenty of time to absorb new concepts and accept that trying to test their understanding will be triggering (with the resultant stress likely having a negative impact on their recall of the information so not giving a true result anyway).

“But how can I help them make progress?” By understanding they don’t want to be at a disadvantage. A PDAer desperately WANTS to know all the information because then they’re not going to be judged as inferior by others. It’s just difficult because that involves acknowledging they don’t know something in the first place. So that requires patience, and different resources and approaches for each individual to find resources the PDAer can access without a trauma response being induced.

Spend time truly, deeply getting to know your child. It may take them months to years to start trusting you to understand them and be on a level with them. It can take a lot of conscious effort on your part to not put yourself in a position above your child and it will still happen even with the best intentions in the world. And it’s OK to still have boundaries and expectations; so long as you understand why your child may not be able to meet them. Some PDAers do well with specific boundaries (because it can be just as scary to be the person in charge of making a decision – the expectation, the uncertainty of making the right decision) and not being able to meet an expectation now doesn’t mean they’ll never be able to meet it.

It can be helpful to look at what they enjoy and figure out what needs it is meeting for them. And then your job as a home educator is to provide resources that allow them to continue developing and learning. That doesn’t mean if your child likes Minecraft you should buy Minecraft themed Maths and English workbooks and expect them to want to do them (they WILL be gathering dust for the next 4 years…you’d think I’d have learned that one!). That might work for some autistic or neurotypical children, but generally for a PDAer it may be perceived as a loss of autonomy with you choosing to hijack something they like, as well as it still being an expectation that they do the work just because you dressed it up as something they like. They may lose their interest in Minecraft because of the uncertainty of it being used to coerce them into doing something. By all means, provide Minecraft resources for them – buy and install Minecraft Education Edition on their device alongside the main game, take an interest in what they’re doing and watch what they’re doing. Too many questions becomes an interrogation, but if you’re genuinely interested in “why did you have to use a different pickaxe to get that gold?”, your PDA child will sense that genuine interest and respond positively. Anything that puts them in a position of knowing something you don’t boosts their confidence. Ask the silly questions, ask them things you don’t know the answer to. If you model learning, if you model having difficulty remembering something, if you model having to Google for an answer because you just don’t know something yourself…slowly, slowly, your child will start to recognise that learning isn’t as big a threat to their nervous system as it once felt. They will always have a threat/trauma response to things you wouldn’t expect, because PDA is a lifelong disability. But home education can, in time, support your PDA child in understanding themselves, learning how they react in a safe place with people who understand. It will teach them how to recognise their triggers and take back control of their own nervous system. When your PDAer wants to do something, you’ll already know that there’s no stopping them. Your home education journey can be something joyous as they dive deeper into their interests and find ways to manage their disability in order to remain happy and healthy.