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

DD really struggled at school and she moved last year to a school that is so understanding and kind. They don’t make a fuss about little things and she trusts them so is willing to flex more because she’s not in a constant state of stress. She’s really thriving and I can finally see that she is going to be a successful and happy adult

PDA is not listed as a diagnosis in the DSM5. Previous editions do not list it as a stand alone sub category or formal condition. It was introduced in 1980s as a way of describing children with atypical autism.
Make of that what you will.

Going back to your opening post you say they would calm down and realise what they are avoiding wasnt that bad.

Very often it is that bad to though due to sensory processing and communication issues as its a profile of autism normally.

My son has autism with a demand avoidant profile rather than pda. He actually became less demand avoidant when he was in the right school setting and had lots of OT, SaLT, Equine therapy and setraline. That reset his anxiety levels and he was able to deal with everyday demands so much better.

Its really challenging parenting someone with demand avoidance. They don't respond to rewards or consequence for a start. So im not going to judge parents trying to find a way through this. But I would say some have a lot of learning to do as there are demand avoidant techniques where you can get some stuff done and tackle stuff like getting to appointments. Even understanding what a demand is takes a while.

I prefer pervasive drive for autonomy. Makes much more sense for my kids and the families I work with and is very common.

PDA does exist, but it's very rare. In a 20+ year career I have seen true intractible PDA 2 or 3 times and hundreds of autistic kids whose coping style was avoidant.

Demand avoidance in autism is common, linked to an unempathetic environment, sensory overwhelm, or an avoidant coping strategy.

This is all research based (Pathological Demand Avoidance: symptoms but not a syndrome - PubMed https://share.google/POsPEf17ikPkmXFKA)

People confuse the two and think any autistic child with demand avoidance has PDA.

FWIW I have a demand avoidant adult autistic child myself, and in adulthood low demand parenting/interactions have worked very well.

Every parent must have red lines: usually based on health or safety. Eg I have yet to meet a "PDA parent" who hadn't managed to get their PDA kid to wear a seatbelt in the car.

Then you have the "doesn't matter enough to force it" issues - like insistence on aspects of uniform that are a sensory nightmare. Imo schools should make adjustments here

Then there's the grey areas - life skills, education. I do think this is going a bit awry ATM and I do think that it connected to the curriculum, academy chain behaviour policies, an overly authoritarian education system. I think as parents we have to balance what our kids can manage, bear in mind that often, the less they can do the less they can do as a vicious circle, watch out for their world narrowing too far, and use specialist interests as hooks back into life wherever possible. And don't assume that demand avoidant behaviour in autism is a whole different syndrome and that your child is pathologically incapable of compliance. Most likely they can comply - where they perceive a need or a reason, where they can manage the sensory aspects, and where they feel understood and appreciated.

I personally think the name PDA is unhelpful. Just think of it as a person who manages anxiety by active avoidance, rather like a person who never goes abroad because they are scared of flying, only this active avoidance spreads into more and more areas of their life. Gentle graded exposure is still incredibly important.

They don’t learn though. Action = consequence just doesn’t seem to be something they understand.

Well, there are a number of reasons:

at two most kids go through a toddler tantrum stage. Even at the age the advice is generally to wait it out/etc rather than force into car seat - most mums have had the experience of trying to force a two year old into a car seat and get it fastened and it’s not easy or fast and both you and the kid can wind up injured.

persuasion and bribery and fake choices and distraction work much better than force even at the age of two. (Red cup or blue cup? Look there’s an alpaca, etc etc).

it’s very rare for pda to be a presentation on it’s own, it’s much more common alongside autism or adhd or other more complex situations.

so quite often you are dealing with a (for example) non verbal child, or a child who has eg a brain injury or similar and the focus is on building up communication and understanding, so that as a an adult they can access as much of normal life as they can.

it is absolutely possible to break the will of a small child so that they do what you ask them to do but usually that’s achieved through significant physical or emotional punishment and that sort of upbringing produces an adult who is very vulnerable (can’t make own decisions, can’t manage own anxiety, has very little self awareness, expects physical punishment, etc.

if tried with someone with PDA that sort of approach usually leads to self harm - eg in young autistic children head banging against the floor or similar, cutting with sharp objects, pulling hair out, etc).

most parents prefer not to see their child self harming and will try to avoid it.

The original post was edited.

Look at the original version of the post before the poster edited it. She didn’t use the term correctly. Que is not correct and does not mean to signal the beginning of something.

Autism is a social communication disorder @GiveMearoomwithaview .

Many of us struggle with social niceties because, in our minds, they're not necessary. My natural instinct is to think that asking for a coffee doesn't require a "please" because the "please" is just a social nicety, it's not an integral part of the question.

As a high-functioning adult I have taught myself to automatically say please/thank you or whatever but when I'm at home or struggling, it doesn't come naturally to me. I have to really focus on it. It's also why many autistic people rehearse conversations ahead of time so we know that we'll remember to include the right things.

She’s used the term correctly; it means to signal the beginning of something

What did you think it should be?

It was "a thing years ago".

Except back in those days, people with severe autism and PDA would live their lives sedated and in institutions. You never saw them out in society because they never got the chance.

My child doesn't have PDA but when in burnout or situations or high anxiety they have PDA traits. We pick and choose the battles some the NHS are unavoidable so you try and plan that child will have enough reserves to be able to get through them which may mean you choose not to do other things that can also be seen as a demand.
As they have got.older.and luckily for us they are good at communicating when calm (not the case for all) we are.able.to talk about things and help them plan how to cope over time we hope this will allow them to manage demands by themselves more.
Perceived choice helps so it's time to was bath or shower or sink wash? Washing isn't optional but control over how is.

Remember when it's happening quiet often it can be something the child might want to do but can't it is a terrible internal battle to witnesses and the child ends up loosing whatever.

I have no doubt their are some.afulta where this impacts life to point of not coping but I bet you know a adult who is PDA but has just found a way to cope.

Somone from work who has no social life after work?
People who got mocked or perceived odd because their lives follow strick routines every day and who panic if the routine is thrown. To the point of wearing the same outfits, eating the same food at the same time etc.....

We view them as quirky or might quietly question their behaviour but it may well be their coping mechanism to cope with things they perceived as demand that sends the nervous system spiralling they have built in as.much predictability and low demand life style as they can.

Autism, PDA profile or otherwise, affects someone’s social communication and social interaction. Anxiety can also mean someone comes across as rude. For some, it can sometimes be equalising behaviour too.

It existed years ago. It isn’t new.

With PDA, forcing an issue by physically overpowering when 2y/o doesn’t mean the child will be able to conform at 6/10/16/20… Neither does it mean next time, even when they are still 2, the child will be able to conform.

A person with PDA is not defiant , they can be completely overwhelmed by being asked to do normal everyday things and will spend hours avoiding something they have been asked to do even if it is something they like or want to do and would only take moments to do. My adult son has PDA and when he was young it was not well recognised so we didn’t understand his behaviour when he was small, traditional parenting techniques do not work as they do not respond to rewards or consequences in the way that other children do. Parenting PDA is very challenging and trying to enforce strict boundaries makes things much worse

My son wasn't formally diagnosed with PDA but he is autistic and is/ was demand avoidant. He refused school from the age 10 onwards, as others have said he was highly anxious and had hit burn out.

Regardless of the fact that it is impossible to manhandle a 10 year old into school, he would have killed himself if we had continued to try to force him. He couldn't cope with any demands, that included eating regularly, for 6 months and couldn't cope with the demands of any form of education for 2 years.

Fast forward 10 years he is now a fully functioning albeit still autistic adult who still has anxiety issues.

He got himself educated to a high level and is now studying at UCL and lives away from home and holds down a part time job. He is currently in a break from uni and is travelling.

I was told by school/ agencies I was pandering to him but that is not at all true. It wasn't that he didn't want to do it , it was that (at that time) he couldn't do it.

There are a LOT of assumptions made about children/ parents who go through this kind of thing. It is an awful thing for families to have to manage. We lose friends because our friends don't get it and don't approve.

A lot of our friends have had to eat humble pie as the outcome has not been what was predicted.

A lot of children with PDA are highly intelligent, with the right environment and approach to helping them feel that they are in control they will have far better outcomes than being forced and breaking them.

I think PDA sometimes gets a bad rep from parents who say that their child has it when it’s very obvious their parenting is a big cause of their poor behaviour. I think actual diagnosed PDA is a whole different thing…

I do not think I know enough or have any parental experience of dealing with a child with PDA to come down on either side of this discussion.

What I don’t understand, from the limited experience I have (1 child of a friend) is why PDA seems to show up as rudeness.

She is currently struggling with his demands :

”get me a snack”
”get me my charger”
”give me the remote”

Her explaination is that the demand on himself (the need for these things is the demand on himself) creates anxiety therefore by asking her to get them it soothes the anxiety.

Fine - but why does it negate the need for a please? a thank you? Why is it “barked” at her like she is his skivvy. It upsets me so much to see her treated like this

I have no experience with this, but if it starts at two can you not carry or persuade them at that age so you don't end up with a much bigger child that won't conform. Why wasn't this a thing years ago?

In the extreme case, forcing them to do something can cause physical pain due to sensory processing issues. And I'm not about that.

@Pumpkindreams This is probably the most important and the most misunderstood part about autism and the driver of the anxiety and the need for control.

One of the key neurological differences between ND and NT is the ability to filter out sensory information. Very often this is impacted often really badly in ND. So if you can imagine the worst noise you have ever heard, for some ND their sensory difference is so profound that all day ever day they hear/feel/see the equivalent of that most painful sound you have ever heard and that impacts on every part of their life. It is truly painful just being in the world. This can be the same with emotions. Think of the shittiest feeling you have ever had shame, embarrassment whatever it was now imagine being autistic where sometimes you feel feelings at 100 times the rate that ND people feel them.

Maybe at those levels of sensory and emotional impacts most people would be pretty averse to more demands on them. It is like asking your computer which is running a programme for NASA to run 15 more demanding softwares at the same time. It just crashes and burns.

It's easier now actually because as an adult it's more reasonable to give him independence and not insist on him doing things. The hardest age was early to mid teens when he was violent at times.

My child is 6. He's tall for his age. He's also very strong. I cannot safely pick him up and force a decision on him if I value my safety.

As it stands today, I have in excess of 30 bruises across my body. We have a strict routine, he has consequences etc however this doesn't stop the meltdowns even if he's being given a "choice" (that works in favour of whatever outcome is necessary).

Some days it's not worth the battle.
Some days I am so emotionally spent that I simply can't.
Some days I'll still attempt it and we can't do the appointment for example because he's in full melt down.

A PDA profile generally goes hand in hand with a neurodevelopmental condition so you're not just dealing with a child refusal. You're dealing with a whole range of things.
In the extreme case, forcing them to do something can cause physical pain due to sensory processing issues. And I'm not about that.

It's not a black and white situation. If it were we wouldn't have to risk assessment everything, safety plan, take safe restraint courses.

I wish it were that easy.

I think higher functioning autism and the army can fit extremely well. The routine, clear directions and instructions. I certainly know people who I suspect are autistic and are retired from a pretty successful military career.