Summary: Routines can be helpful provided they are implemented collaboratively. Predictability increases the feeling of safety, but they need to feel agency in how it is achieved.
When I first came to the realisation that my child had PDA, much of the advice centred around lowering demands. Adopting a low demand approach is something that I found extremely helpful. However – a byproduct of this in my case was that routines sort of went out of the window. I had read that the highly predictable routines that are so helpful for autistic children, are not always helpful for children with PDA and can even be triggering in some cases.
Relaxing routines seemed to be helpful for my son at first, but things did feel pretty chaotic. Bedtime was drifting later and later, and my own sense of autonomy and time to rest was being eroded. Had things unravelled any further, I think my son (and I) would have found it too challenging and it would have undermined his sense of safety. Pretty soon I got the sense that predictability without high levels of demand was closer to what he needed.
My read is that routines can be challenging for PDA children, because they often involve numerous demands, and can undermine their sense of autonomy, but predictability does help them feel safe provided it is implemented in the right way.
I’m going to talk through some approaches to routine that I’ve explored through eight months of trial and error, that are implemented in a PDA-friendly way, in case they can be helpful to other families.
Collaboration
The main shift that was required of me was to move away from a top down approach where I am deciding upon and directing the routine, to a collaborative approach where I am designing it alongside my child.
Building trust
My child’s desire is to be treated as an equal as much as possible.
Previously, each step (e.g. time to get dressed now, now time to brush your teeth, what do you want for breakfast…) felt incredibly difficult because my child would resist at every turn. He might run off when trying to brush his teeth or kick me when trying to dress him (which in his earlier years made me wonder what on earth is going on!). He just made it very clear he didn’t feel safe with this.
When he over time sensed that I wanted to work alongside him rather than directing him, he started voicing preferences. Sometimes they weren’t conventional (e.g. wanting to brush his teeth downstairs instead of upstairs), but benign and easy to incorporate without much cost on my side. Sometimes they were insightful – for example at during one phase he asked me just to take him up to bed without declaring ‘Time for bed!’ – so he was able to isolate the part that made him uncomfortable.
Building the trust and the sense that he will be listened to paved the way for him to help me carry out his day in a way that seemed to make him feel safe.
Honesty
Along a similar vein, if I am honest about the implications of doing or not doing something, my son is more likely to decide to do it. Explaining my reasoning sometimes helps, as it feels less like a meaningless directive and gives him a ‘behind the scenes’ look at why he is being asked to do certain things with his time. It all helps in feeling respected and treated as an equal.
Flexibility
Keeping elements of the routine optional where it makes sense
One important element to routines in our house is that they are routinely able to be broken. One might ask whether this really counts as a routine then, but the general structure still remains. I just make sure some parts are optional.
For example, most days we have a bath before bed – I find that to be a pretty useful anchor point for me and for my son. However, if I make this compulsory – it starts to become something he hates, and he makes it clear with his actions and his words!
What if he refuses the bath a couple of days straight and genuinely needs one? What I do then (mostly with success) is just run one – but don’t ask if he wants one. For a while, it worked and he chose to go along with this.
Recently however he did ask for a break from baths, and I accepted this. But going forward this may look like adjusting frequency, switching up to showers. Or maybe, a break will mean it comes back renewed as a beloved anchor in his daily routine!
Essentially – it’s under constant review!
Accommodating unusual preferences
I’ve stopped caring when my son wants to do something unconventional unless it causes an actual problem. For example, if he’s struggling to find a breakfast food he’ll tolerate but eventually says he could eat garlic bread – I go with it. Does he want to eat prawn crackers in the bath? I’m not going to complain as it’s harmless and helps him get through the day happily and is another way to achieve food instake when food tolerance is limited.
Magic choice ‘x or x’
It sounds super obvious and offering choices historically hasn’t always worked for us. However, there seems to be something magical about offering exactly two choices in some situations.
‘Would you like to dress yourself or would you like me to do it?’
‘Do you want to stop now or in 5 minutes?’ (note, there is still often a battle after 5 minutes but it does seem to help him feel some semblance of control over the situation)
I’m guessing that two choices is the right combination of having options, but not having so many choices that choosing feels taxing and potentially like a demand.
It’s worth noting that it doesn’t always work by any means! But it is a useful tool which usually doesn’t cause any harm to try.
Novelty
Transitioning from one step in a routine to the next can be huge friction points. Sometimes, a bit of (preferably cheap) novelty eases this along very well.
Low hanging fruit novelty items
For example, buying a manual toothbrush to use instead of the usual electric one was exciting enough to ease toothbrushing for a few days. Instead of buying the same bubble bath all the time, I try out different types fairly regularly and that sometimes creates excitement for bathtime. Substituting bath bombs has been effective. Having a wide roster of bath toys to rotate between helps as they lose their sheen quickly and create frustration.
Evolution
The routine doesn’t stay the same. Things that work may start to run into a resistance a few weeks later and I have to mix it up – usually in response to a complaint.
Rolling roster – add things but remove them too
This relates to ‘what do we do in a given day’. We tend to have rough themes and a few different activities that my son is currently enjoying, and it gives us a loose set of things to pick from. This is especially helpful given we have recently started home educating so there is a lot of time to occupy!
There was a week where my son suddenly became interested in cooking and we did a lot of that, there were months where daily bike rides scaffolded our days. Of course, there is still room for spontaneity. If there wasn’t, the routine wouldn’t evolve. Also, things do fall out of favour and thus out of the roster. Lots of things are decided on whims, but there have been some common threads which make things feel a bit calmer (from my perspective at least!).
Accommodating as much as possible to free up flexibility elsewhere
Accommodating in other areas of life, when sustained for a long enough, creates a big increase in my son’s window of tolerance. It also increases his trust in me which is essential in him wanting to cooperate with me. Both of these things increase the chance of him being able to say yes to things, or tolerate disappointments. This generally greases the wheels of daily life and makes things better for everyone.
Accommodations can be difficult (ranging from saying yes to activities I don’t necessarily always feel up to sometimes, allowing him to sit out things he doesn’t want to do, and doing tasks for him which I know he can do himself) but it has made life much easier for everyone in the house in the long run.
Avoiding questions because these are demands
It used to be a nightmare to ask my son what he wanted for breakfast. He would resoundly ignore what I was saying or worse still, become dysregulated by it. A couple of tidbits that have worked well for us (using the example of breakfast) are:
- Ask him if he wants ‘the usual’ for breakfast – if there is a favourite he is currently having most days
- Silently put out what I suspect he wants to eat
This doesn’t always work by any means but it has reduced friction.
Approaches which aren’t ideal on paper or by the book – e.g. videos in bed
Sometimes I’ve had to defy sensible parenting advice and it has actually seemed to help. For example, I strongly rejected the idea of any screen use after bathtime. It was all about winding him down for bed and surely use of screens is likely to interfere with his sleep.
Yet, after a few days of particularly intense meltdowns because I wouldn’t let him watch a certain music video before sleep, I relented and it actually seemed to ease him getting to sleep. Sleep occurred earlier than it had been doing prior to that. I still don’t fully understand this one, but I’ve started making sure there is enough time in the routine for videos in bed before he sleeps and it seems to be helpful for now.
I do have to be careful though, see the boundaries section below!
When things go badly wrong a boundary is needed
Sometimes my son might request something in the routine and I give it a try, but I just find it too much and have to reel things in.
Looping back to what I said earlier about accommodation, the more I accommodate him in other areas, the more budget I have to do this without causing him distress.
Transparency can help
When I have to put a boundary in place, it can help to level with my son and explain my point of view or needs clearly. It can make things clearer and also give him more of a sense of being treated as an equal rather than being dictated to by an authority figure!
Give him a win to ease the boundary
I often let him have another win to soften a boundary and reduce a lost sense of safety.
For example, at one stage he preferred to go downstairs again after the bath. I did do this for a while, but eventually it just started to feel too stressful. It created too much uncertainty about when I’d be able to get him upstairs again and it created another tricky transition at that point. Bedtime started to shift too late again and this was too tiring for me. This resulted in me becoming dysregulated too and then things were worse for both me and my son.
Using the example of when it was not working going downstairs after bath, I said let’s go up slightly later so you have chance to do downstairs activities before bed instead. There has been trickiness and resistance, but overall this had made things feel safe enough for him to accept this limitation.
But rock the boat sometimes
Similarly to the above, sometimes things work beautifully (e.g. magically saying he has had enough videos when it’s the ideal time for sleep) but sometimes that doesn’t have to happen automatically and I have to more or less insist, otherwise sleep is not happening. It’s always a balancing act, as if this is done in a heavy handed way it can trigger significant dysregulation which would delay bedtime in any case. Keeping it calm and non-personal sometimes helps.
Conclusion
The biggest common thread among all of these is that nothing works forever – novelty is important, predictable anchors soon start to feel like obligations, and of course children do grow and change frequently. I have to stay on the ball and am forced to think quite hard about the necessities of eating, bathing, toothbrushing and sleeping without it becoming distressing for the entire household. I also constantly have to find ways to protect my own needs. But it has been useful picking up some broad tools which sometimes help in my family so that I’m not always working blind.