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

Teach her how to say "no" in lots of different ways in lots of different situations, role-playing it with her. Otherwise you get a schoolgirl who isn't able to recognise that when the local rough sleeping alcoholic asks her in her school uniform "do you have a boyfriend?", the next question will be "will you go out with me?", and an adult woman who's response to being chatted up by a drunk in a crowded pub is to either fawn or scream "fuck off" in his face.

Teach her how to recognise the set phrases that mean "I want to have sex with you". And teach her that men will lie to get her alone so that they can rape her. Otherwise you get a girl who thinks that "coffee" only ever means a hot drink.

Also teach her that if a man gets past her defences, it's not her fault ever (even if she froze and forgot what you taught her, and even if she thought this man would be safe) and she can tell you. And make sure that she knows straight away to get the emergency pill and to get an STI test a month later.

I sympathise with you. People are ugnorant. They don't do basic research. They assume psychiatrists and psychologists don't know what they are talking about!You seem to have done brilliantly in difficult circunstances.

My son is 9. He's autistic, I don't think he is PDA but he is resistant to demands and very emotional.

I think for me the biggest clash with what you're saying/ the misconception here is that my son at 9 is different to how he was at 2. At 2 he was different to other 2 year olds for sure. We had a lot of meltdowns, terrible sleep etc etc but obviously back then we didn't know why and it was also within the range of normal for a toddler. And yes, I did just pick him up and yes he would just calm down (though sometimes it would take an hour or even more)

As he grew, some things improved but new things appeared. So the meltdowns happened on entry to school, for example. I couldn't just pick him up. Sometimes I had to call the school office and get someone to come out to my car to help me get him out of the footwell.

Now, we have improved school for him (this was easier once he was diagnosed as neurodivergent because tbh a lot of staff at school took the same approach you do.) Funnily enough, once he was having movement breaks, emotional literacy support and wearing ear defenders at lunchtime lo and behold he managed school and now goes in without a fuss!

But - he is now 9 and I can honestly say going to school Monday to Friday uses up all of his mental capacity. We do no after school activities. We don't have playdates on school days (and .. he is very rarely invited anyway ☹️) On the weekend, we can do one thing. Sure, I could do the equivalent of 'just pick him up ' and make him come and see some friends and family - manhandle him into the car maybe? - but if I did we would pay for it later with meltdowns lasting all evening.

So in short, you don't understand. And I know you're not trying to be offensive but you must realise that having a life avoiding giving your kids demands isn't fun at all and nobody would choose this life. The lady who assessed my son said at the end (when me and my husband were crying) "try and remember you aren't failing, you're parenting on hard mode. Parenting your child is harder than parenting most children". I repeat it to myself in my head on the lonely days. But it does hurt when people make out that actually, we're just lazy and weak .I've had to find strength I didn't know I had.

Please read a serious article on the subject .This will help you understand that it is not easy to deal with. Yiu obviously have no idea at all what it like. Asking mumset readers for information is pointless. Unless they are parents of a child with PDA or psychiatrists or psychologists,they won't be qualified to advise!

Im so sorry to hear what you’ve gone through. I was aware of this stat and as a parent want to do everything I can to help my ASD/ PDAer avoid these situations.

We are very low demand and they have autonomy in almost every area of their life at home but how else do i prepare them to protect themselves?

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".

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!

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…

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.

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

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?

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

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.

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.

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.

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.

Its a disability. 🙄

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.

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'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.

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 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.

Pathological demand avoidance

Pathological Demand Avoidance

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