Those with experience of PDA...sorry long

[yawningmonster]

This came up on a recent thread of mine and I have had a look and it all looks very familiar but I am not really sure if it is just because so many of these conditions overlap or not.

DS is 8 he is developmentally delayed by 6 years. He has diagnosed dyslexia, aspergers and dyspraxia so he has a lot on his plate.

He is somewhat of a challenge to parent to say the least.

With PDA I get it that they have anxiety related avoidance of demands. DS is actively avoidant of any thing and everything that is not on his internal agenda, I'm not sure this is the same? With children with PDA do they only react to demands or do they react to anything that they don't understand or don't like or weren't expecting?

Meltdowns over the last two days have been

1. me only reading two stories and not three (always for the last 8 years has been me reading two and dh reading one!)
2. me not getting him a drink when he hollered for me to come down the hall way and get him one (thread on this, he is able to get everything involved in getting a drink for himself
3. me digging a hole in the garden for a new plant as apparently it was his special place
4. he hurt his leg today (which was my fault but as far as I could tell the damage was minimal) as far as he was concerned he should have been taken to a and e
5. when sore leg was remembered he got four large building blocks and put two under his hands and two under his feet and proceeded to slide everywhere as he couldn't walk on his leg...he had a massive meltdown at dd (3) who thought he was playing and laughed
6. the cards where taken off him as he was ripping them into strips (he has paper he can use for this and the cards were not his
7. the oven timer going off for dinner as it hurt his head (this is usually a noise he can tolerate
8. being required to wear clothes outside as it was 25 degrees today and sun here would burn him to a crisp
9. being (gently) reminded to piss in the toilet not everywhere but

10. (I have been trying some positive parenting approaches during the holidays and one thing is that the children get at least 20 minutes of my time completely dedicated to what they want to do.) We had one slot of 20 minutes each in the morning and then went out from about 10-12, I said that he could have another 20 minutes when we returned. He said he was hungry when we got in so I gave him a choice that I could make him something to eat before or after the 20 minutes slot...couldn't cope with the decision.

I'll leave it there as we are in a bit of a rough patch at the moment and there are many, many, many meltdowns a day at the moment taking anywhere from 20minutes to an hour to calm down.

Are these the sorts of things that a child with PDA would react to or does it fit with his current diagnosis and does it matter do we just deal with it the same regardless?

I think this sounds normal for asd, tbh.
Holidays are always hard, due to lack of rules/ routine, and your ds sounds as though he's getting general anxiety from things not being as expected.
It might help to think about your ds in terms of his developmental age, rather than his chronological al age, so a lot of the above, when coupled with sensory sensitivities heightened by anxiety (due to lack of school routine in holidays) all makes sense.

My ds has been part of some recent research at the Elizabeth Newsome centre re, pda. He is almost the exact opposite to most dcs with asd, he hates having any timetable or reminder of what happens next, and will react against anything he k.owe about in advance, even things he wants to happen.
He's getting much better, but he used to be so bad he would gets anxious about Christmas approaching, he'd do anythi.g he could to try to get me to cancel it, even though he was looking forward to it so much as well. He hated/loved his birthday for the same reason. One year, he was so anxious about going on holiday he wouldn't let us pack-he kept unpacking every time we put anything ready to go. He broke things that we needed on holiday and made up all sorts of excuses not to go. By the time it was time to set off, he was a total wreck (so was I!). The follow.g year, I did it all in secret, and only told him when he was in the car that we were going away. I have to streets that this avoidance behaviour is not because he doesn't like these events, it's because he likes hem so much, he can't cope with the anticipation and the anxiety of them not turning out exactly as he expected.
At school, they don't tell him anything. Every activity is a 'surprise', and there is always a selection of alternatives just in case. Sometimes, he can go with it, and do the work for a few minutes (he can't stay on task for more than about 10mins max, then he has a rest), sometimes the new task gives him so much anxiety he can't even begin, and they shelve it in favour of something else. They are very, very patient!
I hope this helps to see some of what we're tackling with pda-type behaviours. I need to add that pda is not a recognised 'disorder' or 'syndrome' as it isn't in the big book of diagnostic descriptors used by psychiatrists. It is 'merely' a very useful description of a set of behaviours common to some children on the asd spectrum. I chose to take part in Yeh research. Because the description could have been written for and about ds1, and the traditional asd approaches were turning him into a wild and crazy kid!
Have to add, he's much calmer since we read up on pda and saw things from that angle.

Thank you so much amistillsexy...I read the PDA stuff and while he checked pretty much all of the boxes (except the ability to take on personas and role paly) I felt that with his diagnosis as is he ticks all the boxes for those reasons if that makes sense. I really appreciate the time you took to post and for really clearly describing to me what your experience of PDA is.

No problem.if it helps, one of the things our child psychologist was concerned/confused about when diagnosing ds was his ability (constant need!) To role play. He creates fantasy worlds for himself all the time, and we regularly live for days with him in character as a Viking, or a Roman, etc. His 'worlds are quite complex, and historically accurate, but he rarely let's anyone else in, unless they do exactly as he says.

Hi yawning I couple of months ago I started to think that Dd3 had PDA alongside her ASD, it seemed like every single demand we made of her was met with a meltdown.

I bought the book "understanding pathological demand aviodance in children" as I read it I realised that actually none of the strageis suggested would work with her.

Dd3 is very literal, she has awful problems with compromise and making choices. She also gets very anxious when out of her comfort zone.

Anyway, for now I have put the idea of PDA on the backburner and have increased the amount of visuals and warnings of change. I have also been into school and told them that she has been struggling since moving into a new yr group as I know this was having an impact on her behaviour at home,

I think there is lots of crossovers betweenn the conditions so I am not surprised that your Ds fits many of the criteria. Try looking at some strategies and see if they would work for you. You dont need a dx to use the strategies if they work.

Good luck

thank you Ineedpatience...I agree that the strategies wouldn't work with ds...he doesn't cope with choice and definately needs plenty of warnings about things that are going to happen. Very helpful.
Hothead yes a lot is about control as if things don't fit in with his perception of how the world should work then he can't cope so he works hard to keep in control.

We do try to talk to ds and explain why we have done things and while we don't expect him not to react to things, the way he reacts effects all of us but he has trouble with focusing on conversations and tends to go off on tangents when anxious so very difficult to actually talk to him successfully.

An example was that I tried when he was calm to explain that daddy wants to read one of his stories because he doesn't see ds all day and that is part of his special time together. When ds demands that I do it, it hurts dh's feelings. DS hummed and gaze averted the entire time and then asked me he could play a card game.

Ripping paper is something he does when he is anxious...it is just an alternative to punching a pillow etc,

Thank you for the book recommedation I will look that up, we have not had much success with getting his input to finding a solution as he as yet has not admitted or realised that his meltdowns are real and actually happen...

Dd3 does the changing the subject thing to.

Have you read anything about Theory of Mind? It is all about not really understanding that people think differently from you.

Understanding ToM or lack of it has really helped me to understand where Dd3 is coming from, although at this ,moment in time I am struggling. Mainly because we have been stuck in the house together far more than is healthy over the last month.

Keep up the talking though, he probably is listening but will need it repeating over and over and over and over........

Good luck

thank you Ineedmorepatience, I have read a bit about ToM and he definately struggles with this area. As you say it sometimes does help to know where he is coming from but I struggle at times to get to that place in order to guide him a little further on the path on understanding our world. I agree about the time together, we are week three of a seven week break so everything has changed for him in terms of routine etc so I know there is a lot of anxiety about those changes even though he would prefer to have holidays than school.

INMP can you recommend a book that explains theory of mind? I'd be really interested in finding out more about that.