Pathological Demand Avoidance (PDA) is recognised as an autism profile. This means that while there are separate or amplified traits that come with having PDA, it falls under the autism spectrum.
A note on language: Some people have expressed a dislike for the term ‘pathological demand avoidance’ as a label for this condition. While at this stage there is no widely accepted alternative name, some prefer ‘extreme demand avoidance’ or a ‘persistent drive for autonomy’. These remove some of the negativity associated with the PDA label, and allow for more positive identification with a part of who they are as a person.
What does it mean to have PDA?
Having PDA means that demands can feel so overwhelming, uncomfortable or anxiety-provoking that it may even be painful for the individual to comply. But demand avoidance can also be compulsive and may just be a matter of the PDAer not having the ability to get themselves to do whatever is being expected of them, even if they want to.
Demands can trigger the individual to respond out of intense anger. Sometimes this is a response to a significant amount of emotional and/or physical discomfort. Sometimes it is a result of the individual’s own frustration with being unable to get themselves to do something, especially if it’s something they actually want to do. And sometimes it’s just a response to the cherry on top of an accumulation of other stressors.
It is important to understand that the behaviour that comes out of this isn’t necessarily something that can be controlled, and it isn’t a deliberate attempt to defy or hurt anyone or anything. As mentioned, often it is either compulsive or it is an attempt at easing or avoiding the intense emotions that arise as a result of the demand or lack of control. There could also be several other underlying factors that may amplify the avoidance of any particular demand, including sensory sensitivities and executive dysfunction.
These behaviours can sometimes be minimised or helped by adjusting wording or approaches to demands, particularly for things that are a necessary part of daily life.
What is considered a demand?
There may not always be a set rule for what qualifies as a demand in the mind of an individual with PDA and it may vary from one person to another. However, demands can include (but are not limited to):
- Instructions, rules, laws, and anything else that feels like being told what to do or how to do something (especially if the person with PDA doesn’t know the reasons behind the rule, or if the reasons don’t make sense)
- Questions
- Needs
- Choices or being required to make a choice
- Indirect, unspoken, or implied requirements or expectations
- Responsibilities – including chores, maintaining hygiene, taking medication, homework or sustaining oneself
- Social rules and expectations or socially appropriate scripts and behaviours
- Dress codes
- Group decisions or activities
- Goals
- Routines
Demands can also be self-imposed.
What does PDA look like?
PDA is often interpreted as bad behaviour or deliberate disobedience or defiance. It comes with a strong avoidance of demands or requirements as well as a need to be in control. This can include behaviours such as:
- being passive aggressive outright refusing creating distractions running away
- shutting down or withdrawing
- melting down
- doing the opposite of what’s been asked
- being violent towards themselves or others
- making threats
- procrastinating
- being controlling or getting upset when others do not do what they want
- coming up with excuses as to why they cannot follow through with an instruction
- some individuals with PDA will also use fantasy, imagination and role play as ways of coping with PDA. It’s a way to escape, feel safe and be in control
PDA can also include avoidance through the use of social strategies, which can appear manipulative. Individuals with PDA can develop an understanding of neurotypical social behaviours and communication, that they can use to avoid demands. For autistic individuals, this social understanding may be a collection of logic, observations, scripts, mannerisms they’ve picked up, things they’ve been told, and things they’ve read about. It isn’t necessarily indicative of a deeper, emotional, or instinctual understanding of neurotypical behaviours and socialisation, and can mask social differences that they face in everyday life. For this reason, despite displaying social behaviours and communication less typically observed in other autistic individuals their age, they may still appear socially unaware or unresponsive.
This can also come across as a lack of sensitivity to, or empathy for, other people’s emotions. In some cases, this is just because autistic socialisation and empathy looks different to that of non-autistics and is often misinterpreted.
From the perspective of a PDAer:
“I am so sensitive to the emotions of others that I’d almost begin to feel them as my own. This would often result in me being more overwhelmed and displaying more challenging behaviours, typically directed at the person whose emotions I was struggling with. The lack of ability to be in control of the situation was distressing and my response to that could easily be perceived as a lack of care or sensitivity, shown through what appeared to be a deliberate attempt at picking on the person who was struggling.”
What are some strategies to work with (rather than against) someone with PDA?
Please keep in mind that not all of these are going to work or be appropriate for every person. Individual experiences with PDA can vary significantly, particularly across different age groups.
Recognise that most people do not like being told what to do. For a person with PDA, this is far more extreme; sometimes the avoidance is compulsive and sometimes the individual isn’t able to cope with the discomfort, overwhelm or anxiety triggered by the demand. So even with strategies in place, the individual may still be avoidant.
There are obviously going to be things that are a necessary part of life and, particularly for children, this means there are always going to be demands or requirements. However, it can be helpful to frame these differently. Below are some suggestions of strategies that could be helpful.
Recognise that there may be more going on than just demand avoidance.
Given that PDA is an autism profile, there are several other traits to consider. Something like brushing your teeth can be an overwhelming sensory experience and that can make it significantly harder to do. It means that not only are they dealing with the discomfort of a demand, but they are also dealing with discomfort from their senses.
When someone is avoiding a demand, it is important to consider whether there are other things that need to be adjusted to make that task more manageable. Is there a sensory difficulty? Is there a communication issue? Are they understanding the task? Is there an executive functioning issue? Is the task itself just too overwhelming? Do they know where to start? Are they having difficulty staying focussed?
Make it more of a choice than an instruction.
For younger individuals this could be something as simple as “Would you like to have a shower now or in ten minutes?”. However, again, the phrasing needs to be considered. If you word it to say “You need to do either this or that”, it’s still going to be perceived as a demand.
For more complex situations and as the person gets older, this strategy may work best when you give unbiased information that allows the individual to feel like they are making an informed choice about their actions.
Use declarative language.
Instead of giving instructions, demands or requests, make observational comments or statements. For example, “It looks like we’re all finished eating, I wonder if we can all clear the table”; “Your food is in the kitchen”; or “Your laundry is dry, I have time now to help you put it away if you’d like.”
Some autistic individuals may not respond to this kind of language, it may not be processed or understood as a need for something to be done. But for an individual with PDA, that might be helpful. If it’s not being processed as a request for action, it becomes a choice. This kind of language may also be the way that they communicate when they would like help with something. So instead of directly asking you to help them, they may just say that they want to do something; or say that they can’t or don’t know how to do it; or they might make a statement like “The food is burning.” If you’re unsure, it can sometimes be okay to check if they would like help or offer options of what you can do. For example, “Would you like me to show you how to do it, would you like me to do it for you, or would you like me to leave you to figure it out yourself?”.
Put the task in front of them and walk away.
If they need to eat or drink, put food in front of them, say nothing and walk away. This might work with other tasks too but, if it doesn’t, you can just have a laugh with the individual about how weird or silly it was for you to put items in such an odd place.
Give as much of the “why” as possible.
For example, “It is important that every person brushes their teeth at least twice a day because if they don’t, their teeth start rotting and they have to be removed.” This is not about using scare tactics and it should be honest, sincere, and realistic. It’s about helping the individual not to feel that they are just doing something because they “have to” but instead they are doing it for a logical reason. In some situations, this also allows them to problem solve and provide their own alternative solution.
Make the task a challenge, a song, or a game.
“How fast can you…?” “I bet you can’t finish this task before I finish my task.” “How many _____ can you pick up in five minutes?”
Remove the direct demand entirely, make it fun and be involved, engaged, and encouraging.
Turn it into role play or an imaginary game.
For individuals who find comfort in imaginative worlds or play, it can be helpful to use that to get through difficult tasks.
Approach it in a way that still leaves the responsibility on the individual but comes across as you trying to be supportive.
This could be checking in on how they are getting on with a task or whether they’ve done it, rather than telling them to do it (e.g. “Have you brushed your teeth this morning?” or “How are you getting on with cleaning your room?”). If they haven’t managed to complete the task, you could follow up by asking if they need any help with it or if they’d like a reminder.
Consider the necessity of the task and possible alternative solutions.
Is it necessary for the task to be done? Is there a creative way to avoid the demand but keep everyone comfortable and happy? For example, if the problem is a messy bedroom, does the room need to be cleaned because there’s food and dishes in there, making it a health hazard? Or can the door just be shut so that it is not bothering anyone else?
Be ready to negotiate.
Come into the conversation fully prepared for the initial instruction to be disregarded and be ready with alternatives. If the initial requirement is that the child needs to go to bed, the follow-on could be asking what they might like to do for ten minutes before they go to bed. This then also allows a transition period, and they know what’s coming next, which is something that is often helpful for many other autistic individuals as well.
Be prepared for things to take longer than they should.
You are going to be more stressed if you are in a rush and do not have the time for the PDAer to be resistant. This added stress will make it harder for you to be patient and calm, which will likely only result in you making more demands, and that will just make the individual more avoidant. You’ll likely end up stuck in a cycle of worsening each other’s overwhelm. So, plan ahead and give yourself extra time.
Clearly outline the expectations or lack thereof.
For example, “If you have the time or energy today would you mind…”. Wording it this way makes it clear that you’d like something done but that it’s not actually a requirement. It allows the individual to decide for themselves if they have the capacity to complete the task.
Frame it as an opportunity to be helpful or do a favour.
For example, “I’d really love it if you could help me with the dishes today.” Again, this makes it a choice but also makes the individual feel good and know they are appreciated. However, this only works if there isn’t going to be a negative reaction to the individual deciding that they don’t want to help. Once you add a negative to it (such as disappointment, frustration or causing feelings of guilt), future requests for help are more likely to be perceived as demands.
“Would you mind…?” “Do you want to…?” “Would you be able to…?”
This strategy often needs to be used in conjunction with the next point but wording things as a question (when any response is accepted) makes things less of a demand and more of a choice.
Accept “no” as an answer.
In many cases, especially as a child, “no” isn’t the acceptable answer. This means that requests (even when just asking for help) often feel more like demands despite them being worded as a choice. If you can set the understanding that “no” will be accepted (in a wide range of contexts), it is more likely that the individual will recognise that they aren’t going to be forced to do something that they aren’t comfortable with, and this can help to reduce difficult reactions.
Having said that, “no” doesn’t have to be the end of the conversation, particularly when it’s regarding something that is necessary and there isn’t the option to just not do it. If it’s something that can wait, consider just leaving it at the “no”. If it can’t be avoided, it can be helpful to acknowledge the “no”, acknowledge that they are not ready to do that task, acknowledge how they might be feeling, explain the importance of the task and then either:
Ask them what they’d like to do before they do that task. Depending on their answer, you can follow with “Okay, so how do you feel about doing that for ten minutes and then doing the other task?”. Give them a list of tasks and ask what order they’d like to do them in (e.g. “We have three tasks; dishes, having a shower and brushing our teeth, what do you want to do first?”).
Ask if they’d like to try again in five or ten minutes.
Try implementing one of the other strategies on this list; offer to make it a challenge or make it something you do together.
Validate emotional responses, be understanding, and try to help the individual regulate themselves before and while following through with a necessary task.
Imagine yourself being forced to do something that is painful, while the person forcing you to do it is only getting frustrated and angry with you for not being able to do something painful. That’s sometimes what it can feel like for a person with PDA. Being understanding and teaching emotional regulation will be more important, long term, than getting the task done.
It can also be helpful to understand that behaviours that appear socially manipulative, such as leaving out certain information with different people, is kind of like a survival mechanism. They may be attempting to avoid anticipated demands and therefore anticipated overwhelm.
Be careful with how you respond to compliance, “doing the right thing”, or achievements.
As much relief and excitement as it might bring you when the PDAer manages to do the things they need to do or achieve something they’ve been struggling with for a while, they way you express that can, unfortunately, turn the achievement into a demand. Even if it wasn’t a demand to begin with. Giving too much praise or being too outwardly excited can mean that, for the individual, the achievement starts to feel like an expectation (something to maintain, to be able to do again or better in the future), or it becomes something that someone else wants (or wanted) of them.
This can result in the individual becoming quite distressed or angry, they may deny their achievement or even undo it. Some PDAers may even start hiding their achievements, making it look like they aren’t doing well when they actually are.
Obviously, everyone is different, and some individuals may love the praise and excitement. Some individuals might want to know you’re proud of them but can’t handle big reactions and others might just need to you to be completely neutral. This is something that will likely take a bit of trial and error to figure out, but you can try:
- Matching their energy and reactions while you let them know you’re proud or happy for them.
- Agreeing with their feelings about their achievement.
- Staying neutral – instead of saying “You did such a good job”, you could say something like “How do you feel about that?”. If they’re overly critical of themselves, ask if they’d like your opinion. If they say yes, keep it balanced. For some individuals it’s okay to give constructive feedback while acknowledging what they did well.
Recognise your limits and your emotions.
It is important to acknowledge that parenting, teaching, and/or supporting someone with PDA can take a lot of patience. If you come into the situation struggling with your own emotions, it’s going to be harder for you to manage and support the individual with their emotions, and that is likely going to be miserable for both of you.
There are some battles you are just not going to win. Sometimes, no amount of pushing, begging, negotiation, encouragement, or support is going to get the individual to do whatever is being required of them. That does not mean you are failing as a parent, carer, teacher, or support in that person’s life.
From a PDAer’s perspective:
“As someone with PDA, I fully acknowledge that it probably sometimes feels like we’re making it impossible for you to be good at your role in our lives. I acknowledge that it probably results in judgement from other adults, strangers or parents and it probably sometimes feels like we are deliberately making your life miserable.
While I am only one person and I cannot speak for everyone with PDA, please understand that it’s not usually something we’re able to control, especially when we’re young or when we don’t understand why we’re struggling so much, even with things we want to do. Even as an adult, who is very self-aware, while I may be able to recognise and redirect my emotional response, I’m often still not able to comply with demands, requests, or instructions.”
This resource was written by an autistic author with lived experience of PDA.
For more information: www.pdasociety.org.uk