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

Oh, ok.

i do know some people with this profile who are living in a way that roughly approximates to “normal”

one lives with her parents. She is employed by the atomic energy authority and writes code and does research for them from home. She’s obsessed with this and it’s her special interest. She’s not on the graduate scheme there because she’s too disabled to go in in person (has significant disabilities and there were problems getting her wheelchair past security).

her parents cook and clean and generally sort her life out.

another one I know has largely moved on from the presentation - he spent five years in a therapeutic school (and it helped that his parents finally got divorced and stopped emotionally and physically fighting). He was able to access mainstream by age 14 although was very delayed academically.
i lost track once he left secondary.

Adults who have these diagnoses but are able to live at least somewhat independently often have additional diagnoses of psychiatric disorders. They often struggle to maintain relationships or hold down jobs, fail to take care of their health, or develop addictions.

It’s also about how they feel about the demand. I know someone who has PDA and a successful career in the military - people were really surprised but he feels the demands make sense and it doesn’t cause anxiety.

op it was hard to pick my daughter up when she was 2 never mind a teenager. When you are trying to force a child in near meltdown to do something they have an unreal strength and ability to hurt a parent or destroy a house.

The pda society says that something like 60% of children are unable to go to school. I have one who I kept trying to get to school,in fact she wanted to go to school, but she ended up having a breakdown (also known as burnout) and suicidal feelings. It’s not just pda but she has autism and adhd so a whole bundle of personality traits and urges that conflict with each other meaning that she’s very troubled and complicated to have as a mother.

I don’t know how she will cope as an adult and I have sleepless nights around it. My ex (her dad) has said that he has pda traits. Fortunately when we grew up in the 70s/ 80s we had more free time, less homework, less pressure to do well at school, no after school activities so he could relax with early role playing computer games. He’s now a highly successful man so doesn’t have many people making demands on him.

To be fair schools have changed over the last several years, with a more authoritarian regime, more academic curriculum and fewer members of staff to support pupils experiencing difficulties, throughout the 5-18 age range.
It's no wonder more pupils experience anxiety at the very least.

So instead of picking the child up and distressing them needlessly you create an illusion of choice as much as possible.

So for example,

“Do you want these pink socks or the green ones.”

Instead of “should we put your socks on?” Which could be a no answer and you having to force it which results in a meltdown because you’ve taken control from the child. The control is about predictability to reduce anxiety which is the primary driver of this personality profile btw.

Instead of a row the answer becomes “Ah look you chose pink aren’t you clever”

Another example,

“Do you want jam or ham sandwiches after we finish in the dentists?”

Now you’ve just made them feel like they have chosen going to the ‘dreaded’ in their mind dentist.

Routines are predictable, social stories can be used when something new is being introduced, sensory issues are considered to minimise sensory overload and reduce meltdowns.

Predictable, predictable, predictable.

Even a young child can be difficult, my 3 yr old physically hurt me on many occasions. I was punched and kicked and it can bloody hurt. I learned restraining techniques because i was still bigger and stronger. He also hurt himself, pulling out eyelashes, scratching skin, banging his head. Try sitting in a traffic jam with that going on behind you. It's unimaginable stress.

If you genuinely want to learn, The PDA Society has a lot of information and resources available.

Some with PDA cope better in adult life, including work, because adults generally have more autonomy. Others don’t and need support, sometimes 24/7 support, for life.

Low demand doesn’t mean no demand. That is what a lot of people who don’t are judgemental fail to grasp.

It isn’t about ‘not putting up with it’ as a pp mentioned.

Actually people can.

pda often goes with an autism presentation.

a friend of mine has his 43 year old son still living with him. The son who is 43 has a mental age if about 5 and loves to watch Thomas the tank engine videos and play Thomas the tank engine games. He has carers who come in on a 24 hour rota.

he lives in a low demand environment because otherwise he gets violent.

it’s always interesting because people say that you can’t have an adult life with not meeting demands. You absolutely can, but it bars you from “normal” life.

pda presentations are very common amongst people in care as adults.

My 7yo doesn't have PDA but does have Autism and ADHD. If he doesn't want to go somewhere by car it would take two adults to restrain him and one to drive the car and even then I'm not sure how safe everyone would be. There would certainly be scratches and bites, maybe broken items and bruises. It would have to be a life threatening situation for parents to feel this level of force is appropriate. When they get to adult size, even more so. And yes I did make him do things at age 2. Luckily because he doesn't have PDA we can use things like rewards, bribery, playfulness and distraction for a lot of things and it's rare that we can't do what we need to do one way or another. But it has happened.

Sometimes adults like this end up in psychiatric hospitals, sometimes permanently sedated.
Could you not work this out with common sense?
Many adults with neurological differences or psychiatric disorders cannot navigate life at all. Surely this isn’t new information to you?

Not quite mine is medicated quite heavily as it happens and he does leave the house 95% of the time when he "has too" but the knock on effect is quite hard on all of us

My thoughts exactly... really wouldn't be surprised as it would explain an awful lot!

At 2 you don’t even know they have PDA and you spend years trying to undo the harm that traditional parenting caused

my dd is a lot older and after some rocky years we have found a happy medium. Maturing has helped and allowing her to make her own decisions. Decisions that lead to consequences. Also the less I show I care about a certain impact the less she is ‘triggered’ so to speak. Lots of praise when she makes the right choice etc etc

its Not every demand that causes a problem so we work on the key ones that she will face throughout life

Yes, of course it has nothing to do with better awareness of this particular issue... not at all. Of course a medical professional would wrongly diagnose something like this in so many cases...

Que? I hope you aren't a teacher 😅

I have a 20 year old with pda (internalised type - so super avoidant and shut down). He complied with demands and masked throughout childhood. The burnout he has suffered for the last 2 years is astonishing - to the point he can barely function at times. I wouldn’t have believed it unless I would have experienced it.

I have an 18 year old ds with externalised pda (old school ODD - defiant - sometimes aggressive - again wouldn’t have believed it until I’d experienced it). We still use a lot of declarative language and give him as much autonomy as possible. It works but believe you me there have been many many times I wish I could have told him to just stfu and do as he is told. It ruined our relationship when I took this tack. Thanks to NVR and parenting for his neurotype we now have an amazing relationship and he is thriving (whilst still having debilitating PDA at times). He’s very much liked and is off to uni but has many many struggles still related to his PDA profile.

Mine is 17 ive dealt with this for some people are clueless incapable of a five minute google and it shows

Sounds like you are rather uneducated about this condition. Quite sad, really.

What I'm interested in is, why you are ruminating over the parenting techniques for a child with a particular difficulty that you clearly have no experience of?

It seems as removed as me wondering about how parents should best manage to help a child with a different disability. Maybe I should sit about and contemplate how parents should better tube feed one child or better navigate the world for a child in a wheelchair?

What would I be achieving by assuming that I could grasp the biggest challenges around them and then assuming that they were failing to do things properly?

The other thing I wonder about is why people use children with sen and their parents as a lens to consolidate their ideas of what good parenting should look like for all children generally when the needs of both cohorts vary wildly?

Are you serious??

Yes you can pick them up and overrule their feelings when they are 2 / 3 / 4... it gets harder after that 🙄