Autistic Demand Avoidance – an example

Autistic Demand Avoidance (ADA for short) is different to Pathological Demand Avoidance (PDA). Though both involve avoiding demands, with ADA the demands avoided are usually ones that the autistic person finds difficult, unpleasant, or negative in some way. Negative sensory input is a common reason why an autistic person will avoid something, after all who would want to say, eat tomatoes if the sensation makes you feel sick. PDA on the other hand involves avoiding things that are seen as a demand, even when they are not negative to us in any way.

Quite often, when you deal with the negativity around the thing the autistic person person is avoiding, they become able to manage it. For example if an autistic child is struggling to eat dinner because they cannot tolerate the sensation of tomatoes, removing the tomatoes and giving them food they can tolerate means they are now able to eat.

With PDA however, it’s usually not so much the task in question that is the problem as much as the fact that they need to do it. For example, they may love tomatoes and their dinner might be their favourite, but it’s the fact that they have to eat at all, or that they are expected to eat, or even that eating will make them feel good, that causes the demand avoidance.

ADA can seem rational, reasonable, and easier to fix where possible. Whereas PDA can seem unpredictable, unreasonable and difficult to fix as it often involves things we need and want to do with little way of altering it to make it easier.

It can often be hard to tell the difference between ADA and PDA, especially if there is a lot of anxiety around the autistic person impacting their ability to do things, and if they’ve been pushed so much in the past that even when you fix the issues around the things they are avoiding they may not feel safe enough to try them again anyway.

I have two PDA children and one non-PDA autistic child. For me, it’s obvious that my youngest is not PDA in a way that is hard to describe., but I’m going to attempt it here. My child hasn’t been assessed for PDA so I can’t say 100% that he definitely isn’t PDA, but he does have an autism diagnosis and I am 99% sure he is not PDA.

When my PDA kids avoid something, it can literally be anything. Things that they did fine yesterday, something they did fine a few minutes ago, something they often avoid but in different ways every time. You never know what they will avoid and when and how, it’s unpredictable. This can feel like walking on eggshells, never knowing when the next crack will come.

With my non-PDA child, the things he avoids are usually the same everyday. He doesn’t want to get dressed by himself, he doesn’t want to leave the house to go to school, he doesn’t want to get his own snack or drink, he doesn’t want to open his own crisp packet, he doesn’t want to turn the tv on himself, he doesn’t want to brush his own teeth.

This looks a lot like laziness, but some of it is that he struggles with the motor skills required, and another aspect is that he doesn’t want to stop whatever he is doing to do the task he doesn’t want to do. I often say, if he doesn’t want to do something then he just won’t do it, and no amount of rewards or prompting will change his mind. He’s very much a ‘I’m settled here so I’m not moving for something unimportant’. His way of communicating his avoidance is generally to yell and scream that he wants something but doesn’t want to get up to get it, or crying and hiding to avoid doing something that he doesn’t want to do. It’s predictable, it’s the same thing every day in the same way.

If there’s something he really wants to do, he will do it. If he doesn’t want to do something or doesn’t see it as worth doing, he just won’t do it, end of. If you put his favourite food in front of him, he’ll eat it. If he wants to play with a toy or have a bath or go outside to play, as long as there’s nothing better to do elsewhere, he’ll easily get up and do it, no problem.

With my PDA kids, they will avoid things they want to do, if I put their favourite food in front of them they’ll have a meltdown because it ‘wasn’t what they asked for’ or they ‘can’t eat it right now’ or I ‘used the wrong colour bowl’. They want to eat it, they just can’t because it’s a demand.

In some ways it’s easier to manage my PDA kids because I can use things to get them to do the things they want and need. I can use novelty or deals or tricks, mostly because they want to do the demand, they just need a bit of help getting there. I don’t push my kids to do things they really don’t want to do unless it’s necessary for them, such as eating, so most of the demands they are faced with are ones that are important for them. But for my non-PDA child, wanting something isn’t always enough to convince him to do something.

Many PDAers will come out with reasons for why they cannot do something, often fantasy reasons such as saying they cannot get dressed because they are a dog and dogs don’t wear clothes, or they can’t get dressed because their legs are on fire. My non-PDA child also uses reasons, except it’s the same reasons every time, he can’t put the screen on to charge because it’s too far away, he can’t get dressed because the clothes are too far away, he can’t eat his dinner because it’s too far away.

Nearly every morning is the same, a voice screaming from the settee that says ‘I want apple juice, I want cookies, I want the TV on’ and every attempt to get him to do these things for himself is met with ‘I can’t, it’s too far away’. The predictability is frustrating.

Being PDA myself with two PDA kids means routine isn’t really a thing here. We have some routine in that we tend to do things a similar way most times, but we are often unfazed by a change in plans unless it was a particularily wanted change. We tend to eat different things at mealtimes, we might do different hobbies everyday, want a different story at bedtime most days. We thrive on change, change that we make of course.

My non-PDA child has somehow managed to fit in to our unpredictable lifestyle, but he struggles. He likes his routine. I try to keep things the same for him, even though my own PDA resists. The same food every day at the same time, the same activities, the same games, the same day in day out. He manages okay at school because of the routine, he struggles more at school when things are different, on trips or around christmas. He struggles a lot when going back to school after any time off because of the disruption to his routine.

We lead a very low demand lifestyle, if it isn’t important then it gets left out. This works great for my PDA kids, they actually do more this way. They are very independent, doing things in their own time and their own way. One child will teach theirself Latin, another will learn every flag, one child will cook amazing meals, often without the recipe, another child will be off teaching themself science. When left to their own devices, my PDA kids thrive and grow, learning all kinds of things, stopping and starting hobbies on a whim.

My non-PDA child doesn’t really do independence, if you don’t make him do something then he just won’t do it. I have to get activities out for him, set them up, and convince him to join in, only then will he take part. Somethings he will happily join in himself, jumping up and down in excitement as I get out the paints or tell him to get dressed for the park, but he rarely initiates activities on his own, preferring instead to sit back and wait for others. Whether he has forgotten about the activities until they are mentioned by us, or he just lacks the skills to initiate self discovery, I don’t know, but the difference is telling, when left to their own devices, my PDA kids seek out things while my non-PDA child doesn’t.

Being people-focused is listed as a trait of PDA and this is also shown in my kids. My PDAers will often latch onto one particular person, becoming almost obsessed by them, wanting to talk or play with them all the time. My non-PDA child is less attached to people, preferring to sit back and watch or liking everyone equally. At the school gates he will talk to whichever child is around while my PDA child will search out the child they like best at that time. As long as you’re nice towards my non-PDA child, he’ll be nice back.

My oldest (PDA) child was an expert at using social strategies to avoid demands. You could ask them to tidy up and they will distract you with questions about something completely unrelated until you forget what demand you were asking. My other PDA child is less proficient at this, but will still attempt to distract you from imposing a demand, maybe by showing you a game or talking at you about their favourite subject. My non-PDA child lacks these skills, whether because his neurology is different or because his social skills are just not as advanced, he cannot distract you from putting demands on him. Instead he will either do the demand, react to the demand by crying or having a meltdown, or won’t even notice the demand in question at all.

Far too often I’ve told him to do something only to find he noticed my presence and decided to show me whatever he was doing without realising I’d even spoken. If I interrupt him to get his attention to deliver the demand, he may do it if he’s not too distracted, or he may start screaming. Quite often it is easier to show him what I want him to do, he is far more likely to comply with a demand if it’s presented visually, which shows his verbal processing may be quite lacking. Meanwhile my PDA kids often notice the demand straightaway, even before processing what the demand involves, showing a hyper awareness of the presence of possible demands. My PDA kids seem aware of their environment in a way my non-PDA child doesn’t, they are constantly on guard, waiting for the next demand attack, often prepped with some excuse or tactic to avoid it.

My youngest was barely born when I discovered PDA, so I’ve been using PDA strategies with the whole family since he was a baby. In many ways this has helped, as PDA strategies can be helpful for all children, however it was when he was around 3 that I started to notice how some of the strategies weren’t helping, and were in fact hindering. In particular the way I communicated with my kids. This worked brilliantly for my PDA kids, hiding demands in long sentences, using hidden prompts, dressing up demands, cutting down on things like praise and overly emotional wording. But for my non-PDA child, the way I spoke was confusing and wordy. When I started adapting how I communicated with him, using more direct wording, more emotion, praising him and being obvious with demands, I found he was far more receptive and started doing things that he wasn’t doing before.

My PDA kids will often try to take charge of some activities or tasks, or will remind me if I forget about something or get distracted. “Do I need to brush my teeth”, my PDA child will say if I haven’t mentioned it when getting them ready for bed, “you said I needed to tidy up”, they remind me after I’ve had a difficult day and ended up putting that demand on them knowing they wouldn’t manage it. They will sometimes even do a task before it needs doing, which is one way of avoiding a demand, removing the expectation to do the task by doing it before it can be expected. My non-PDA child doesn’t do these things. If it’s part of his routine he may go off to do them, if he wants to, otherwise he will forget about them, whether deliberately or not. If something is part of his routine and we change it, he is more likely to try to do it anyway or get upset about the routine being spoilt, but he won’t try to take over like my PDA kids do, he doesn’t try to do things in a different way or be in charge, he just does things the same way as he did it before.

One of the main ways I feel my non-PDA child is different to my PDAers is in their energy. Even though my PDA kids are very different from each other, they both have the same energy, a sort of unpredictable energy that can explode at any moment. My non-PDA child seems far calmer, even when having his biggest meltdown, his energy just seems more stable and less explosive. It’s hard to describe, it’s like they have different wave lengths.

All autistic people are different, and all PDAers are different. The way I’ve described my non-PDAer may apply to other PDAers, I don’t know, but after having spent years caring for my children it seems obvious to me that my youngest definitely isn’t PDA. Although some days, when he’s screaming at me for apple juice when I know he could get it himself if he wanted to, sometimes I wonder.