Editor’s update from Terra Vance and Richard Woods on The Aspergian’s position on PDA:
There is debate about the existence of pathological demand avoidance (PDA) and whether or not it is an autistic profile. We’ve promised to update the community as we continue to look into the issue from all sides.
The Aspergian’s members are divided, but our soft position is that for very logical reasons, most autistic people have a degree demand avoidance that relates to anxiety about social differences, sensory processing, executive functioning issues, burnout, and social overwhelm, or from frequent co-occurring conditions like general anxiety, depression, and trauma spectrum disorders.
We believe that PDA exists as a neurodivergent phenomenon, but not that it is exclusive to autistic people. We feel more research is needed to determine if PDA is a distinct condition or an interaction of co-occurring conditions.
However, we respect that many people identify with this profile and have formed a rich community and body of resources to help others overcome demand avoidance. We will continue to update the community and our readers on our position and as new research and insights become available.
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15 Life Hacks for PDA
When thinking about life hacks for us PDAers, the most obvious strategy is, ‘Do what we want, when we want, with no demands put upon us.’ The path of least resistance and all. Easy, right? Wrong.
Around every corner is a demand waiting to thrust itself upon us. So how do we cope with all of these demands that can’t help themselves hammering down on us like we’re a nail that just won’t lay flat?
I have sat down to write this article over a dozen times, have had the words clearly in my head; but when I have found a quiet moment with my laptop, a wall drops down between what I want to do and actually being able to do it. I am an autistic with a PDA profile and sometimes the demand of doing even something that I really want to do is impossible.
So what, then? What would make our lives easier so that we don’t hit a brick wall every time we want to do something?
- The main strategy, in my opinion, is to reduce as much anxiety as you can. Again, I know how easy that sounds and how difficult it is in practice, but read on.
Having PDA doesn’t mean that you avoid every single demand/potential demand that you come across. It’s fluid. When you are less anxious and are in control, the need to resist the demand – to gain control – is far less than the times when you feel out of your comfort zone and your need for control is sky high. With this comes a much better chance to be able to do the things you want to do.
- Find your tribe. If being autistic makes you feel like an alien on this planet then being PDA can sometimes make you feel like a space monster.
By finding your tribe, you’ll find that you’re not alone and that these people think and react in the same way that you do, plus these are people who you don’t have to mask in front of. Having the freedom to be yourself is like having the best stretch in the comfiest bed.
The sense of belonging is one that every human in this scary world yearns for so find those that you belong with. They’re out there, I guarantee it.
- It’s ok not to be able to do things when you want to, sometimes.
Don’t beat yourself up for not being able to go see that film you were planning on watching or another activity that you can’t get past the wall to do. Personally, I find it increasingly frustrating when I want to do something (like sitting and writing this article) but just CAN’T.
I feel it’s almost a vicious circle; we want to do an activity, can’t, get frustrated, which causes anxiety, then that leads to a spike in needing control and inability to do activities.
Give yourself a break. That’s not a demand!
- Let friends know that you may or may not join them on an activity.
Reduce the pressure and, therefore, the demand to attend. If your friends know you and accept you for who you are, they will be fine with this.
- When you are feeling very anxious or overwhelmed, remove all demands, or at least reduce them as much as you can.
The more demands are perceived or placed on you, the more you will be pushed towards meltdown – and no one wants that. Pushing yourself to meet demands in high stress times can cause burnout, and then you’ll get nothing done.
- One way to reduce the stress and anxiety of responding to a demand is to respond by text or email.
It gives you time to think of a way to reject the demand in a less abrupt manner, and it will remove the pressure of having to do it in person.
- Find little things that you can control around the house. This is a good hack if you have a PDA child or teenager.
If they like being in the garden; cordon off a section of the garden that they can do what they like with (as long as it’s not very dangerous to themselves or others). DO NOT interfere with their section unless they have specifically asked you for help. Let them be in charge of what film is watched on movie night or what takeaway you are going to have for dinner.
Having a range of things that you can be in control of will help to keep your anxiety down, and you can go to these things and tinker when you feel a little anxious.
- Regarding PDA children and teenagers: I know the bedtime battles that you have with them as they see an enforced bedtime as a HUGE demand.
The kindest and best thing for both them and you is to let them stay up until they are ready to go to bed. Let them play in their bedrooms or watch TV. Believe me, I know the pressure of trying to raise your child how you are told you are supposed to do it– with strict bath and bedtime routines, etc. People will accuse you of being too lenient and spoiling your child.
But these things are awful for PDAers. By trying to enforce these things, all it does is cause them a great deal of anxiety, often leading to them lashing out or being in a great deal of distress. It also leads to a great deal of stress for you and the potential of being hurt when they do lash out.
- Have an impulse buddy!
I don’t know about you, but I have very poor impulse control which has led to me painfully regretting some of my impulsive decisions. If you have someone you trust who is sensible and has your best interests at heart, just run your more extreme impulses by them before jumping in head first.
I have a very dear friend who has ‘Jo cards’ that she uses when I am either going too far or if one of my impulsive ideas is totally nuts and something that I will later regret. Yes, these cards can be seen as a demand, but I have total control over whether I listen to her or not.
Having a card shown to me is often like splashing water on my face. It alerts me to look at what I’m doing and assess it with clarity rather than slapdash over excitement.
- Have all your bills on Direct Debit payment to avoid the demands of having to pay bills when they arrive.
Try and schedule them to come out around the times when you have the most money in your account, such as right after paydays or benefits deposit.
- Do chores and routine work in small steps.
If you have jobs/chores that need to be done, they can very quickly become hulking great demands that you just can’t make yourself do. Try to limit how many jobs a day you do; for example, do one job in the morning and one in the afternoon with lots of demand-free, relaxing time in between.
- Demand-free breaks!
Sometimes it feels like everywhere we look, there is demand bearing down on us that sends our anxiety through the roof. Find ways to step away from it all, every day or as often as you need, where you can just ‘be’.
Just stopping everything and going with the flow of what your brain decides it wants to do can be powerful to reduce anxiety. It puts you right in the driving seat, which gives us PDAers all that lovely control that we thrive on.
- Learn how to meditate.
It is something that you can do for two minutes or two hours. But it is a great way to calm the mind and to reduce your anxiety. There are lots of free apps that have guided meditations on them with lots of personalities and styles to choose from to fit your style of unwinding and focusing.
- Find what works for you.
I don’t know about you but, from a young age, the overwhelming and ever present demand of conforming and following precise life points has been the most intense and inescapable demands of my life.
Go to school. Get a job. Get married. Buy a house. Have children. Have the same cookie-cutter life as all the Smiths and the Joneses. I tried, HARD, to fit into these moulds but always ended up sabotaging them or only being able to do them for a short time before the need to do something else took over.
I have moved 27 times in my life. I think this is largely due to not wanting to be stuck in one place for too long. Settling down and being forced to stay still while my brain is screaming to run and be free was never going to work until I found a way to work with— and not against— PDA.
This is something that I wish someone had said to me all those years ago:
YOU DO NOT NEED TO CONFORM.
You can be anyone, do anything, go anywhere – as long as you stick within the confines of the law, go for it. Yes, having money is incredibly useful, and, therefore, you have to work in order to get money; but do something that you love.
Do something that feels right to you. Find your niche. You don’t have to live up to this expectation that is put on us to be like everyone else and to do things just to tick them off the ‘things I must achieve in life’ list.
And finally;
- Read books and articles by other PDAers.
It is a liberating experience reading someone else’s words and finding them to resonate in your bones like they could be talking specifically about you.
In particular, Harry Thompson’s PDA Paradox is a fantastically wonderful book. I engorged on it and read it in two sittings and feel all the better for reading it. I highly recommend it.
I am a passionate autistic advocate and my aim is to help to spread awareness, understanding and acceptance of autistics.
I live in the UK and, other than writing, enjoy several different craft hobbies (when I have time and my PDA lets me indulge!) and talking our son and our dog to the woods for a meander!
- Why Gaming Can Be Good for Autistics - January 20, 2020
- 15 Life Hacks for PDA (Pathological Demand Avoidance) - December 6, 2019
- Here’s to the Mums of Autistic Kids - October 2, 2019
10 Responses
I dont like the name pathological demand avoidance. Its not pathological. Its adaptive and normal for a human body & brain to be conditioned against doing things that are extremely painful, frightening, punishing etc.. (which is why ABA works to control Autistic people). Our internal bodily biofeedback, is so uncomfortable, or traumatic etc.. when trying to meet demands in the way neurotypicals have made available to us (like grocery shopping, social contact with NTs etc..). It becomes not worth the personal cost on physical and emotional energy – and the times and experience of having to recover after etc…
Example: If someone electrocuted a neurotypical while they were doing groceries (or screamed in their ears, shoved lights in their face etc..), while walking down the road, having a conversation – esp if also with someone being confusing or unnecessarily cruel, or communicating in a way that doesnt make sense to them etc.. an NT would not call their avoidance pathological, they would say its obviously a natural, adaptive response to negative stimuli, and the environment is the problem.
What you’re describing is rational demand avoidance, and all autistics will experience a degree of it. There definitely is a point where rational demand avoidance becomes irrational, though, that some people experience. After a great deal of study, I’m of the firm opinion that PDA is a type of OCD or is neurologically similar. It isn’t always about avoiding things to conserve scarce energy/spoons. It becomes avoiding things you really want to do, like eating a meal when it’s right in front of you if it feels there is a demand on you to do it, or failing a test you could easily pass, or backing out at the last minute of an event you’ve been looking forward to for months because someone says, “Let’s get in the car,” and it feels like a demand.
A really salient example is a woman who was told by her boss (along with an entire workforce, so not just personally to her) to try and get bathroom trips in at a certain time (to reduce lines during breaks that prevented everyone from being able to go). The advice actually was just giving people permission to know they didn’t have to wait for break times to go to the restroom, but she wouldn’t do it. She kept developing UTIs and even had some accidents at work because she just couldn’t stand feeling like she had to use the restroom on a schedule. This was one of many examples that eventually led to losing a position at work.
It really feels like a big disrespect to people who identify with PDA that people call it rational because they do not experience it as rational and want to be understood. Much like with OCD, it can become a self-sabotaging act that really interferes with quality of life (which fits the definition of pathological).
But you’re right. There’s huge potential for autistic RATIONAL demand avoidance to be seen as a pathology people try to train out of them instead of understanding their sensory, social, and personal needs. It’s a complicated issue all around.
Regardless, I think that the low-demand, low-arousal approach (like in this article) is great for any autistic or otherwise neurodivergent person who feels like it’s helpful.
I fit into what you describe. I can be starving hungry but refuse to eat, even if I feel like the food physically, because I dont want to ‘have’ to, or dont feel like I can – just for no reason.To the point of extreme stress/meltdown – even dissociation. Or to contact someone, when I have to, like an agency or something I really have to do – even if I have the energy, and capability in theory/past experience (its not about ‘conserving spoons’ – and that really wasnt what I was saying in the first place). Sometimes these things feel like a violation of my will, or my body’s boundaries, even when that doesnt make sense – just the bodily experience of this demand, choice or need (aka demand from body) makes it impossible.
Also avoiding doing groceries to the point of bare cupboards, and mounting stress and terror over having to do it, but still feeling like I physically cant, even though my rational mind is begging me to go, that I have to do it – its not just about wanting to delay or avoid the awful sensory/bodily experience of leaving my house. Its still rational – as an autistic person, I shouldnt have to operate in the world like this, simple and necessary things shouldnt be like this – its wrong.
I can relate to that woman – its completely understandable. Its her body, and someone trying to govern when she can use her bladder is toxic – she should be allowed autonomy and the ability to use this basic right at her own discretion/as need be. Its not appropriate of her boss to say that. A lot of autistic people have had very negative experiences with authority which was not about them, a lot of autistic people have extremely pathological parental relationships where there are major boundary issues, abuse, and toxic desires to silence, control, bully, shame and suppress autistic people doing what is normal and needed for them.
Things can negatively interfere with quality of life, but still be a rational, natural response, given the prior experiences. I dont think there is any need to call it ‘pathological’ – this is just from an NT lens. Autistic people have enough negative perception about them without adding to it via labels with negative connotations about the person.
Without meaning to argue when we are not on completely opposite sides of opinion, or to drag this on:
Power hierarchies are inherently wrong. They operate outside the basic dignity and equality of human beings, and the personal sovereignty of the soul.
Power hierarchies of ableism, capitalism, meritocracy, gender, Speciesism, Beauty, racial privilege, parent/child, age, financial inequality, social class, social status/charisma/ability to deceive and manipulate – and even one person getting to tell another when they can use their bladder, or when they can go to bed isnt appropriate according to the truth of who we all are on this planet. I think autistic people inherently know this – its the way it seems to me. So many autistics share Autistic people are less likely to discriminate against others ‘lower’ power status, less likely to obey social norms/expectations, binaries etc.. less able (and less willing) to create a power imbalance for their gain (i.e. intentional harm, deception/lying, social insults, bragging, bullying, faking/exaggerating emotion to generate sympathy, fake mirroring to secure a friendship bond etc..). Its not our language or mode of operating. But we have to live in a world that completely and inherently operates on the currency of power dynamics (that are often not in their favour).
It may not always be possible to give an Aspie complete authority over all choices (i.e communication challenges), but Its needed to ask themselves why they feel a need to control an autistic persons behaviour in a way that suits them (i.e what they gain, at an Aspies loss), whether they are only viewing the situation from an NT perspective, and whether allowing an Aspie to have autonomy actually infringes on safety of the Autistic individual or others – or whether its actually fair to make a change that helps an autistic person function as themselves in the world.
I agree with this, without the rational/“irrational” distinction: “There’s huge potential for autistic RATIONAL demand avoidance to be seen as a pathology people try to train out of them instead of understanding their sensory, social, and personal needs. It’s a complicated issue all around. “
Also, good article. I find writing lists extremely helpful – and keeping a small notebook on me. And refuse to buy outside of it or deviate from my plan otherwise the impulse control can be so problematic (I can just leave it for next time if not pre-decided – it eliminates stress of decision making on the spot in public) . What seems like a good idea when even mildly sensory overwhelmed is often not.
I also find exercise extremely helpful in reducing impulsive urges – I never leave the house unless ive exercised first. Its been a hard battle for me as I have always been naturally avoidant of exercise, due to heightened sensory exp meaning its more uncomfortable – muscle/body pain more painful/heightened, + coordination, + autistic inertia.
But pushing through this daily with forms of exercise I enjoy is so helpful – it resets by internal sensory world & proprioception, gives deeper stimulation and grounding to my body than what stimming my skin/surface does – if that makes sense. It gives me more control, calm, and sense of myself. I use a variety to not get bored: kettlebells, do yoga, pilates, HIIT workouts, weighted hula hoop, rebounder etc..But the harder, the better it seems to work. I couldnt care less about fitness or improving my body any further aesthetically, its purely sensory – and the endorphins help with depression. And as soon as I get home I use my massage roller on the floor, otherwise im so spacey and just do stupid things I dont need to do/waste time & neglect what actually practically needs to be done incl my biological needs.
An alternative to point nr. 10 – make a budget, set up a different account, and wire a specific amount of money there each month, and then pay all your bills from that account (maybe with direct debit? or…?) then you always know what money you have available, and you’ll be sure you can always pay your bills. And if you don’t know how to set up a budget – google it, or ask for help! 🙂
Thank you for sharing such valuable advice. I see very little information about PDA out there and I’m glad you shared this.
Hilarious…love your stuff. Its taken me sixty-five years to come to this conclusion about my self. I always used the adage ” Eh.. (I’m Canadian)…I’m a free spirit”. My wife says “Rebel Without a Clue” as a twist of that old 1955 movie with James Dean.
I use to at times think I was punishing myself, as I came through autism in good ole bad ole days of strait jackets, electricity and much chemical restraint. And actually as a young and tender lad I was the one that was wrong, you have confirmed my my most inner and deepest conviction about what they said, and now know I was right!
Bless your heart for writing on this, it made me laugh. And if all fails — may I make a suggestion, it could be your 16th point. I wont be PDA about how right I* am on this point…but 16 should be “If all fails, start laughing uncontrollably and with a robust for the joy of it.”
It has effected me so much that my website at WordPress is up and down and up and down…freedom: “I don’t need to be tied down by some stinking website”
The many essays I write on a subject spending hours in the making and crafting, only to to toss them in the trash.
You have impressed me to focus, and pay attention to this as it is destructive and highly impulsive.
Laws and policies are one thing but action and practice are a total different matter my basic human rights alongside others totally disregarded causing traumatic stress for extremely vulnerable people and completely sensory overload trying to comprehend and understand with access to information and due process disregard breach of human rights and discrimination passed from pillar to post by local authorities and health board while we suffer continuously because of unjust unprofessional failures yet again just makes me feel physically sick this is allowed to continue