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)

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.

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.

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.

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.

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

What did you think it should be?

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.

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.

The original post was edited.

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.

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

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.

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

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.

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.

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

But I don't think it is always about a drive for autonomy. In my kid it's not about doing things their own way, it's about not doing things that feel difficult, scary, overwhelming, or uncomfortable - and actively avoiding those things, without feeling or in any case being motivated by social imperatives (because if the autism). When things are undertaken now as an adult it is on their own terms - when they feel ready. But it's not a drive for autonomy. They don't seek to lead on their own terms - for example in late 20s they take no active role in their finances. It's still an avoidance of something that feels too much rather than a wish to do things on ones own terms.

I think you've explained it really well.

It's not wanting to do things our own way, it's needing to avoid things that we feel we can't cope with.

It was actually proposed as an alternative "not autism" condition, though now acknowledged as part of autism.

Those couple of PDA kids I referred to were very different - very prosocial but very much autonomy seeking (unlike the vast majority of demand avoidant autistic youngsters)

The schools I know of are the opposite of this as they are more aware of how to manage neurodivergence proactively within the restraints of minimal funding.

I’ve a sibling who I strongly suspect has it . Very strong willed and difficult as a child , my parents thought they had oppositional defiance disorder. They had massive meltdowns over everything including just simple things like putting on clothes . They are highly intelligent and thrived in school and with friends honestly , it was like Jekyll and Hyde. As and adult , they still have a rather difficult personality at times , will not answer messages for days on end but they are have a successful career and family of their own and obviously are no longer having tantrums over clothes . I suspect my sibling masks a lot at work and then is exhausted when they get home .

Demand avoidance in PDA is primarily determined by the cumulative load of stress experienced by the PDAer. They experience all the usual causes of stress (for anyone) plus all the standard autistic stuff of struggling with changes of plan, lack of routines, social communication differences AND what is often a hair-trigger nervous system that goes into (negative) overdrive every time they perceive a loss of autonomy or loss of equality with others.

If you pick up a child and put them in the pushchair or car, they will experience an intense loss of autonomy (they don't get to choose whether to go in it or not) and an intense loss of equality (you are putting yourself "above" them in making them do something).

This means they will be dysregulated, which may involve meltdowns, self-harm, violence, eloping etc. They don't calm down and realise the avoidance wasn't necessary or justified. The demand avoidance is actually only the symptom, not the root of the problem. The problem is that their nervous system is telling them they're about to die, and the demand avoidance is their way of trying to protect themselves from a situation which makes them feel like that.

In future it is likely to involve further demand avoidance around going in the car / pushchair excuse they've learnt that it is an inherently unsafe activity.

It will also increase their cumulative stress load, which will increase demand avoidance for all other demands and particularly access to basic needs. So you "putting" them in the car may result in an inability to eat, to sleep, to clean teeth, to toilet themselves etc. When the cumulative stress levels and/or cumulative demands exceed their threshold of tolerance, this can result in PDA burnout which can involve months or years of being unable to do most basic things like eat, sleep, engage in personal hygiene, leave the house, engage in social interactions etc etc.

Helping a child to cope with the demand of leaving the house for an appointment requires a while-life multi-faceted approach which will include reducing other demands, using declarative language, making other language adaptations that help the child, working on non- verbal communication, offering opportunities for the child to experience autonomy and equality, understanding that demand avoidance is a nervous system reaction and disability rather than bad behaviour, working on emotional connection and building warm trusting relationships, and other strategies.

The best immediate way to help a PDA child do something difficult is to not require them to do it. Only when they have the legitimate option to say no can they stay regulated enough to be able to say yes.

I'm not an expert but I have a Child with PDA Autism and OCD. Its more then just avoiding demands, example when she was 6 she went 3 days without drinking, and 8 days no food, she ended up in hospital, even the hospital staff couldn't get her to eat or drink to the point of she was hours away from being forced fed with an NG tube, its not a case of being stubborn or a battle of wills.
At times she has thrown stones at me trying to get her into school in shear panic, when I tryed the tough love approach, she ran away while I tryed to get support from staff.

I think one thing is she really trys to overcome, she hates the fact she has behaved a certain way afterwards, she has really strong sense of justice, fairness ect. But struggles with seeing me as authority figure ie if she cant do something then me as her parent cant do it either.

We are learning how to work in partnership with her, it seems crazy in most child/Parent relationships, and low demand isn't the same as no demand. So to the outside world I may seem like a laid back Parent, but believe me I'm constantly forward thinking how to navigate things with her. Asking her to have a shower can take all day for example.

Tough love, forcing her can backfire big time. Yet a different approach and she will eventually do whats needed of her.

My question would be why is a parent filming this and putting it online? It's a major violation of the child's privacy and opens up the family to judgement and abuse from strangers - who will not be educated and informed, but who will go away with their biases and prejudices reinforced. I really think there should be regulation against parents putting their kids on the internet. Children can't consent and shouldn't be used by parents looking for likes and validation or online fame.

Teaching a child that they can't say "no" to things and have to enter situations that terrify them is setting that child up for a lifetime of sexual and other abuse, particularly when combined with the impaired social functioning of autism. PDA is found with autism a lot more often than without it.

90% of autistic women are sexual assault survivors, compared to a third of women generally. This is because:

• We struggle to spot the subtle signs of a man being dangerous.
• We don't understand subtexts and euphemisms. We take an invitation to coffee, or in my case to see and hear his valve amp, literally.
• When we do spot dodginess or even just unwanted sexual interest in a man, we struggle to extricate ourselves from his presence without angering him and we fear getting that wrong.

Then add to that the poor parenting of PDA that looks like:

• "you can't say 'no'” conditioning,
• being physically forced whilst small, and
• being conditioned to suppress fear,

and we are going to walk right into that man's flat with him and dissociate when he pushes us to the bed and climbs on top, even if we are inwardly thinking "this scares me, I don't want this", because we've been trained that "no" is ignored, resistance is futile and will be punished, and expressing fear is futile and will be punished.

These men can detect our vulnerability, we are like catnip to them.

Luckily, I was on the Pill and the subsequent STI tests came back clear.

Your job as a parent is to reduce anxiety and teach your child how to accept, examine, and manage difficult emotions, not groom your child for the world's abusers.

Yes, there are things in life that are compulsory. Your job is to teach your child strategies to navigate those skillfully, and to teach them the difference between that which they cannot walk away from, that which they can walk away from, and that which they should walk away from for their own safety.