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)

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...

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

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

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

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?

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.

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.

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.

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.

So yes there are some with severe autism would not be able to live an independent life regardless to a PDA profile.
I would guess though there are some who have autism that are able to live independently with a PDA profile and I ask how these people manage.

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.

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.

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.

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.

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.

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.

I think higher functioning autism and the army can fit extremely well. The routine, clear directions and instructions. I certainly know people who I suspect are autistic and are retired from a pretty successful military career.

My child is 6. He's tall for his age. He's also very strong. I cannot safely pick him up and force a decision on him if I value my safety.

As it stands today, I have in excess of 30 bruises across my body. We have a strict routine, he has consequences etc however this doesn't stop the meltdowns even if he's being given a "choice" (that works in favour of whatever outcome is necessary).

Some days it's not worth the battle.
Some days I am so emotionally spent that I simply can't.
Some days I'll still attempt it and we can't do the appointment for example because he's in full melt down.

A PDA profile generally goes hand in hand with a neurodevelopmental condition so you're not just dealing with a child refusal. You're dealing with a whole range of things.
In the extreme case, forcing them to do something can cause physical pain due to sensory processing issues. And I'm not about that.

It's not a black and white situation. If it were we wouldn't have to risk assessment everything, safety plan, take safe restraint courses.

I wish it were that easy.

It's easier now actually because as an adult it's more reasonable to give him independence and not insist on him doing things. The hardest age was early to mid teens when he was violent at times.

In the extreme case, forcing them to do something can cause physical pain due to sensory processing issues. And I'm not about that.

@Pumpkindreams This is probably the most important and the most misunderstood part about autism and the driver of the anxiety and the need for control.

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. So if you can imagine the worst noise you have ever heard, for some ND their sensory difference is so profound that all day ever day they hear/feel/see the equivalent of that most painful sound you have ever heard and that impacts on every part of their life. It is truly painful just being in the world. 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.

Maybe at those levels of sensory and emotional impacts most people would be pretty averse to more demands on them. It is like asking your computer which is running a programme for NASA to run 15 more demanding softwares at the same time. It just crashes and burns.

I have no experience with this, but if it starts at two can you not carry or persuade them at that age so you don't end up with a much bigger child that won't conform. Why wasn't this a thing years ago?

I do not think I know enough or have any parental experience of dealing with a child with PDA to come down on either side of this discussion.

What I don’t understand, from the limited experience I have (1 child of a friend) is why PDA seems to show up as rudeness.

She is currently struggling with his demands :

”get me a snack”
”get me my charger”
”give me the remote”

Her explaination is that the demand on himself (the need for these things is the demand on himself) creates anxiety therefore by asking her to get them it soothes the anxiety.

Fine - but why does it negate the need for a please? a thank you? Why is it “barked” at her like she is his skivvy. It upsets me so much to see her treated like this

I think PDA sometimes gets a bad rep from parents who say that their child has it when it’s very obvious their parenting is a big cause of their poor behaviour. I think actual diagnosed PDA is a whole different thing…

My son wasn't formally diagnosed with PDA but he is autistic and is/ was demand avoidant. He refused school from the age 10 onwards, as others have said he was highly anxious and had hit burn out.

Regardless of the fact that it is impossible to manhandle a 10 year old into school, he would have killed himself if we had continued to try to force him. He couldn't cope with any demands, that included eating regularly, for 6 months and couldn't cope with the demands of any form of education for 2 years.

Fast forward 10 years he is now a fully functioning albeit still autistic adult who still has anxiety issues.

He got himself educated to a high level and is now studying at UCL and lives away from home and holds down a part time job. He is currently in a break from uni and is travelling.

I was told by school/ agencies I was pandering to him but that is not at all true. It wasn't that he didn't want to do it , it was that (at that time) he couldn't do it.

There are a LOT of assumptions made about children/ parents who go through this kind of thing. It is an awful thing for families to have to manage. We lose friends because our friends don't get it and don't approve.

A lot of our friends have had to eat humble pie as the outcome has not been what was predicted.

A lot of children with PDA are highly intelligent, with the right environment and approach to helping them feel that they are in control they will have far better outcomes than being forced and breaking them.

A person with PDA is not defiant , they can be completely overwhelmed by being asked to do normal everyday things and will spend hours avoiding something they have been asked to do even if it is something they like or want to do and would only take moments to do. My adult son has PDA and when he was young it was not well recognised so we didn’t understand his behaviour when he was small, traditional parenting techniques do not work as they do not respond to rewards or consequences in the way that other children do. Parenting PDA is very challenging and trying to enforce strict boundaries makes things much worse