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)

I view it as a kind of pendulum. When the setting isn't right, there's sensory stuff going on, a teacher who doesn't understand, the DA gets more extreme

In a better matched setting with fewer demand triggers, the DA diminishes

But if you are PDA the setting, sensory environment, accommodations etc makes zero difference.

That's at least what I have found.
My DC is autistic demand avoidant but not PDA - it was never about autonomy, but about life's demands feeling unbearable.

It was a 'thing' years ago. I work with adults with learning disabilities and autism, but years ago we didn't have social media so people didn't know unless they had direct contact. Because it wasn't as well known or understood, many parents would actively avoid going out with their child because of the shame. There were also more special school places so we didn't see them so much in mainstream playgrounds, some were still there, the ones that got labelled as the naughty kids and were excluded or dropped out.
The pressure for good attendance and exclusion as a last resort is pretty new. I was at school in the 00s, my attendance was at around 50% between year 9-11, there were no fines, no meetings to address why I wasn't there. When i weren't in school I was hanging about with a load of teens who had been permanently excluded.
If we go back to the 70s many were put in institutions. Back to the 80s they were put in children's homes. ND and PDA really isn't new, we just know more about it and aren't quietly shipping them away. I'm seeing adults every day with these conditions who had very different experiences of childhood dependant on when they were born.

An entire plane full of people had to get off because one child refused to put their seat belt on.

My first thought was pick them up and drag them off of the plane but I’m guessing if it was that easy they would have done it.
It didn’t mention SEN but I’m guessing they did.

I think what you’re missing is that PDA is heightened between certain ages. I don’t know the exact ages but really young kids don’t feel as anxious and adults don’t tend to feel as anxious.
So those who suffer with PDA it’s going to usually be ages 6+, kids much harder to just grab.
A baby or toddler wouldn’t have PDA or you probably wouldn’t recognise it as such.

I don’t know if I had PDA but I had similar but my behaviour wasn’t spoilt. I literally missed out on so much and fell out with friends etc because I would go into fight or flight mode and couldn’t help it.

These replies are so interesting, thank you to everyone for sharing thoughts and experiences. I was honestly expecting to have a lot of replies that were negative and give me a hard time for asking, grateful it has not been the case.

Thank you so very much for an excellent explanation …. I have zero experience of ND and honestly for the first time ever, your explanation has “ clicked” with me….at the tender age of 54 I’ve actually learnt what being ND means to those who suffer….again, thank you and sending genuine love , support nd empathy to all of you either who are ND yourselves or are experiencing it with your children…..x

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.

This is so true.

I love trumpet and cornet playing, but sometimes I can't go to rehearsals even though I want to because one or more of the following has occurred:

• Work has exhausted my ability to cope with people and I've got no remaining capacity to deal with my fellow musicans.
• The workplace environment has been noisier than normal (for example: construction equipment noises from a neighbouring building being demolished) or hotter than normal or I've been in a lab that doesn't have a dimmer on the lights so I've been squinting all day, so I've exhausted my capacity to deal with sensory inputs and I cannot cope with the rehearsal room lights or the sound of the music I'm playing.
• Work has been frantic and my ability to switch my focus rapidly has been depleted to the point where it's not safe for me to drive to the rehearsal.

The first time I suffered sensory overload during a rehearsal was terrifying. The lights had recently been switched out without notice from fluorescent tubes to LED batons that are brighter and bluer, and I'd had a busy day at work. I felt like the lights slowly got brighter and the other musicians slowly got louder, until I was surrounded by dazzling light and painful noise. I was sat hunched over with my eyes screwed shut and my fingers jammed in my ears with no idea how to stop it, no idea why it was happening because I hadn't spotted the changed light fittings, whilst in an environment that is normally my happiest place to be outwith my own home.

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.

Disabled people face a quadruple burden:

• The burden of the functional impairment and its direct consequences, e.g. the sensory pain, or the not being able to walk.
• The burden of having to ask for reasonable adjustments all the time. "Is if OK if I dim the lights?" "Do you have level access?"
• The burden of energy and capacity management.
• The burden of feeling guilty for imposing on people with your reasonable adjustments and not being able to do stuff.

Dysregulation is part of autism, and it is made worse by the shame attached to being disabled. Imagine how embarrassed I felt afterwards, realising that I'd been very visibly not coping at band in front of my fellow players? And then multiply that by ten because dysregulation?

Can you tell us more about your experience in this area? This thread is incredibly informative and fascinating!

So I identify with a lot of PDA behaviour but no diagnosis. If DH asks me to empty the dishwasher, particularly if I was already planning to do it, the rage I feel means it becomes the last thing in the world I want to do. I cannot bring myself to do it.

I’m an adult who can control the rage and my feelings, and I rationally know that my feelings a disproportionate, but no one could make me do the thing in that moment. I’ll probably still do it later on my terms.

I operate really well in an environment with a hierarchy and clear rules though. I’m very successful in my job, but I don’t do well with demands in an unstructured environment.

You can only pick them up for so long, and even in that stage the cost to sanity for all involved is often too high. In my experience they simply don’t calm down or if they do they become disregulated in other ways - running away, not eating, not sleeping, not talking, not washing, not pooing, the list goes on…

Would you be willing to share more about the similarities and differences in the types of demand avoidance in your kids? This is so interesting!

I'm rather sick of the advice to give an artificial choice which gives the illusion of control. Maybe it works on some children, but mine have seen right through it from a young age, the ND one and NT one. "Shall we put on your black socks or your stripey socks?" Never really got them happily picking one, it usually got a "No".