Trying to understand PDA: why not insist when something has to happen?

[Pumpkindreams]

I am not sure how to word this without causing offence, judgment. If this does offend or cause upset know that was not my intention. My 80s upbringing likely has influenced my thought pattern.

I keep seeing videos around SEN and PDA, I understand that demands causes anxiety etc however I suppose my question what happens is as an adult you override this. For example you need to leave the house for appointment/ preplanned thing and child with PDA refuses. Why not just pick them up and put them in car/push chair etc. I know I know I sound harsh and child likely would cry and be upset BUT (please correct me happy to learn) they would calm down and realise the avoidance was necessary or justified. I suppose the videos I have seen it seems some parents enable the behaviour.

I fully expect to receive criticism as I know for many this is a sensitive subject but it’s by asking questions others can learn I have no child in my life with these difficulties so I don't understand but I would like to.

(title is suggested one)

Yes DD can recognise the behaviour is unreasonable after the event and she hates being like that so it amplifies the anxiety etc. the sad thing with kids with it is that they are just told they are ‘bad’ and they internalise that. For a long time DD hated herself and we’ve spent a lot of time pulling her back from that

You may end up with a child attempting to jump out your car.
You may end up with a kick to the face, black eye or bruised leg. It is like wrangling an octopus.
You may end up modelling that brute force works, that power is violence-led and that physical autonomy and safe spaces don't exist.
The anxiety will become a deep mistrust and your relationship will inevitably suffer or fracture.

PDA requires

Giving the illusion of choice with multiple choice questioning Do you want x or y or z
Giving yourself up to two hours to meet the deadline
Low demand tone and low sensory input
Removing the obstacles and excuses given not to be able to do something without escalating.

It is a constant tightrope like bomb disposal/defusing. You walk on eggshells and are on constant high alert yourself.
This is why some psychs talk of the brain chemistry of parents being the same as those with PTSD.
Sadly, the need to control comes from deep anxiety within the child, who is facing that high alert state.
Child will pick up on your own so you try to mirror calm, soft motherease tone of voice, everything's fine. That tends to work better but matter of fact works on occasion. Escalating, shouting, stress-induced pitch because you yourself become dysregulated never works.

You hope they will develop greater emotional resilience/maturity as they age after puberty and the pressures of school, if they make it through school. You hope there is some sort of interest, passion, hands on or self employment they may cope with in the future. And pray.

My 10yo has autism and PDA and will sometimes bark orders at me in this way.

I remind her about asking nicely and saying please/thank you. Sometimes she does. But other times she doesn’t and i can recognise if this is a time to challenge it or not.

As a previous poster said, PDA doesn’t mean they get to do whatever they want when they want: it means reframing demands so that they still have control. Ex-H never got it and used to end up in huge rows with her over cleaning her teeth. He’d tell her fairly nicely to brush them, but she’d push back at the demand and they’d end up yelling at each other.

I don’t tell her to brush them, I ask which bathroom she wants to use to brush them. You have to work on the basis that the thing is happening, but give them control about how/when/where.

Can I just say I’m finding this thread excellent the insights are really helpful and strategies are excellent too.

I understand where you're coming from OP. I've often wondered the same about PDA. What happens when they're adults? Is it so debilitating that they cannot live normally by managing the usual daily demands that most of us have?

I'm genuinely curious and asking in good faith. As my question probably indicates, I don't know anyone with PDA and have never met anyone with PDA, so I am utterly ignorant.

Well that is not always going to be the case. There are developmental delays with ND but young kids do develop and improve. Not all of course but many.

Graded exposure is something that can help people with non-PDA autistic demand avoidance, but in the main, exposure methods tend to make PDA problems worse, because their fundamental problem is the perceived loss of autonomy and/or equality. Exposure methods generally involve someone else deciding to use them "on" the PDAer, which is an immediate loss of autonomy and equality, and therefore makes everything harder for them to cope with. Exposure methods tend to be done "to" the PDAer, not by the PDAer. Any strategy used needs to foster a sense of autonomy & equality or it's likely to fail.

(I have both PD and non-PDA autistic demand avoidant DC so I see the similarities & differences in the types of demand avoidance.)

Many end up sedated and in hospital because they can't keep themselves safe in the community.

Others are medicated and build a life that suits them - so they may be self-employed, or only work part-time, or work a job that fits around their special interests which means they're more likely to be able to cope with external demands.

I'm autistic but without PDA. I run my own business. I can't work more than 30 hours a week. My business is centred around my special interest which means I can often tolerate the sensory overwhelm that comes along with it. I'm also medicated and in therapy and will be for the rest of my life.

We get sexually abused a lot.

If we have low enough support needs and are graduate levels of clever, we may be able to find a job that grants us enough autonomy within it to be able to cope with working. This relies on having a manager who consults with the team about stuff too, so that we feel like we have a say in imposed decisions. (Example: my boss wants the whole team physically in a room for a meeting every fortnight. He asked us to submit the best days for each of us and picked one of them for the meeting. He could have just said "the meeting is Monday 2pm, that's final". Having a say in the scheduling makes this inconvenient and nerve-wracking event easier to tolerate.)

Learning the kind of trade that lends itself to self-employment can also work.

PDA is currently understood to be a substitute of autism which is why it doesn't appear in diagnostic manuals because it is not a diagnosis. The diagnosis is autism.

Some people argue for PDA also being understood as part of (non-autism) ADHD, but there is a lack of consensus or research on this.

A lot of us with demand avoidant children have wondered what adulthood will look like. The PDA society used to have some case studies.

Whilst my son doesnt have PDA, just autism with demand avoidance, I would say the older he gets more life suits him. You naturally get a lot more control as an adult. Lots of demands we place on children arent necessary as it happens anyway. (Life has lots of genuine demands too)

This absolutely. DD has PDA and is now a young adult. When younger she might have been desperate to do something, but if I approached it wrong (when I was still learning how to deal with it), she would be sobbing because I'd told her she needed to get in the car now or she would miss the activity, which meant that she absolutely couldn't get in the car before she'd sat and read for 5 minutes to calm down after my 'demand'. By which time it was too late for the horse riding hack or whatever it was, and she would be devastated to have missed it. Simply, the more you push, the firmer you are, the more distressed she got and the longer things took. It's all about keeping things relaxed and not being firm with them. Lots of calm "why don't we..?" or "shall we do x or y", and letting her feel she had control was the best way of making anything happen.

It was a thing but it wasn't recognised, treated or supported, I see the outcome of that in the criminal justice system every day

What is PDA?

As I thought it commonly means public display of affection?

My son does not have PDA but he does have occasionally violent meltdowns. He’s 16 and an entire foot taller than me and 5 stone heavier than me. When he was young we could just ‘restrain’ him so he did not hurt himself or others. Now we’d fly across the room if we tried. Not so simple is it OP.

Pathological demand avoidance

Pathological Demand Avoidance

I wish it was still public displays of affection
Or any display of affection

I agree.
However I think we risk throwing out the graded exposure baby out with the bathwater with the proliferation of the notion that all demand avoidance is PDA.

With non PDA autistic avoiders, I do use graded exposure but only on aspects of their life they would like to change (eg, they would like to be able to buy coffee in Starbucks). This avoids some of the "done to" in that grey area.

With the couple of actual PDA kids, we had to reinvent a curriculum every few weeks that broadly covered aspects of life such as "leaving the house" and "academic activities" because once they realised they were enjoying that activity and so going along with it without protest, that in itself triggered the "stop". It is completely different.

The thing is with things that "weren't a thing" 30 years ago is that they existed but didn't have the same label or understanding..
I'm a carer for a sibling who is close to 40 and has a moderate learning disability and autism (both diagnosed around 7) and has some PDA as part of that profile but we didn't understand it as that. There are times and situations that she needs a lot of autonomy (in the limited ways she can get that), the more demand you place on her the more overwhelmed she gets and the more meltdowns/seizures she has and then the less able she is to do normal day to day thins. At other times she's fairly chilled and able to cope with pretty direct instructions and demands but it is very variable and sometimes a bit like treading on eggshells. If she was an adult 30 years ago she would have been institutionalised as is not able to live independently.

I've got an autistic child, not sure about the PDA bit. He's my third, first two were very easily controlled and easily picked up and moved until they had learned what was expected, which was around 2.
Autistic child is a whole different ball game, the strength he had at 18 months was unbelievable, he was already hard to pick up then and the best I could do was restrain him for his safety, wrestling him to a car seat would have been extremely hard. He didn't just 'calm down' after incidents, he'd be overwhelmed for the rest of the day. I still got where we needed to go, although sometimes a little later than expected, but that needed pictures to help him understand where we were going and what would happen after that along with gentle encouragement. I quickly learned that the stern look and word that worked pretty much every time with the eldest was not effective for him at all.

I find your posts very interesting and they fit well with my understanding but I must say my demand avoidant child had a number of years where he was like that in terms of curriculum. The constant reinvention or it became a stop. Techniques lasted 2 -3 weeks on average.

Lots of professionals felt my son had pda but I really think its demand avoidance now he's older.

I have two children. Same genetics, same parenting. One is NT and reacts in the way you’d expect to being asked to put on her shoes - occasionally will do without questioning, occasionally will wheedle and say ‘ugh I don’t want to’, occasionally says ‘no’.

The other is ND and asking him to put his shoes on usually results in what I can only describe as a panic attack. A soft toned ‘right lovely, time to get our shoes on’ has him running, screaming, non-verbal, rocking and that’s a child that, when regulated, is the sunniest happiest kid to be around.

If I’d only had DC2 I’d think I was the worst parent ever. If I’d only had DC1 I’d think I was wonderful.

It’s not the parenting.

Its a disability. 🙄

Adults have a lot less demands than children. No one is telling adults what they can and can't eat, what clothes they need to wear, what time they need to go to bed, what they can watch on the TV or how they spend their leisure time. They have a level of choice over the job they take on (those that work, some won't manage), whereas children have no choice and are stuck at the school they hate and probably had no choice in. There's no creativity or ability to manage your own time at school like there is in many jobs, you sit with 29 other children at the time dictated by the teacher and do the exact work the teacher sets, you can't even go to the toilet when you need it. And all this is going on before your brain is fully developed to understand the benefits and consequences with each task. People go to work and earn money to pay the bills and buy things they like. Not even a 'typical' child can really appreciate what an education does, even some adults find a lot of the curriculum pointless.

So can you see how much easier and less demanding adult life is? I think adults soon forget and slip into this nostalgic notion that childhood was the golden time and adulthood is tough. That's just not true.