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

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.

As I thought it commonly means public display of affection?

What is PDA?

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

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.

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)

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.

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.

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.

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.)

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.

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.

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

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.

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.

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

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.

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.

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.

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’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 .

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.

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)

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.

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.