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At what point do you suspect PDA?

(21 Posts)
BeyondTellsEveryoneRealFacts Sun 15-May-16 11:33:04

My ds1 has always had a lot of autistic traits, personality wise he is very like me and i am autistic. But recently i've noticed how much he refuses to do silly little things, he will either lie or flat out refuse, no matter what the consequences, and then go into full on meltdown. At what point does refusal pass from just "naughty child" into PDA? I'm paranoid about sharing my concerns (even just those re asd) officially, worried that any bad behaviour will be blamed on my crappy autistic attempt at parenting

He is usually an angel in school, their only observation is that he is rather intelligent. Though there have been a few occasions where he will shout and scream insisting he is right at a small request. He is 5.7

Thank you smile

PhilPhilConnors Sun 15-May-16 11:39:52

We went through a couple of years being very strict parents and having boundaries, zero tolerance etc. but it made things worse and worse.
I then started posting here, and Polter mentioned PDA.
Have you seen the extreme demand avoidance questionnaire? (I'll find it and link it).
We then tried PDA strategies - lowering demands, fewer boudaries etc, and it has definitely made life much easier for everyone, I think that was the point when we let ourselves properly consider PDA. We ended up going private for a diagnosis because our area wouldn't accept it. We felt it was important, as the strategies that work are PDA ones.
The book The Explosive Child is very good.

To be fair, ds's behaviour is blamed on my crappy parenting grin, but we know better and stick to our guns as we know what works and what doesn't.

PhilPhilConnors Sun 15-May-16 11:41:12

Questionnaire is on page 30

BeyondTellsEveryoneRealFacts Sun 15-May-16 11:49:54

Thank you phil. I've sent to questionnaire over to dh so he can't complain of me fixing the result grin

I will have a look for The Explosive Child

BeyondTellsEveryoneRealFacts Sun 15-May-16 11:53:19

Found it on ebay for £2.99! smile

PolterGoose Sun 15-May-16 12:03:13

The book is brilliant smile

My ds's diagnosis is Aspergers and he definitely fits an Asperger profile more than PDA, but he is very demand avoidant. Unfortunately, outdated ideas about autism make it harder to get demand avoidant kids supported in the right ways...

PhilPhilConnors Sun 15-May-16 12:25:36

I don't know if you've seen this
We printed it out for school so they could put it in their files and ignore it and found it very useful for home as well.
We've found ways to get round the little demands (eg, he has two toothbrushes, so instead of saying "Ds, teeth", we'll ask which toothbrush he's using. For morning and evening routine things we find using lists with pictures helps, it seems to take the demand out of it.

Marshmallow09er Sun 15-May-16 15:10:10

For us it was around Year 1 at school when he started refusing to do any work in school after the pressure increased (although had been so challenging before that two childminders and the after school club couldn't cope with him so I had to give up work).
That being said it's not his official diagnosis as they don't diagnosis it on the NHS here, but his paedtrician and the Ed Pysch have all said it's very clearly PDA.
I was given a leaflet at support group about it when I was feeling so desperate for help - it was like reading his autobiography - from his obsessions over certain people (positive and negative), his extreme demand avoidance and he often pretends to be a baby or an animal or speaks through his toys when he feels uncomfortable.
PDA made more sense for his profile as Aspergers had never quite fit (but he is clearly autistic).
The Explosive Child has been life changing for us (and school - the Ed Pysch ran a training course for all the teaching staff on it recently).
The right strategies have made all the difference (and understanding it's anxiety driven. He is so much easier when less anxious - hence the Jekyll and Hyde profile which is often mentioned)

So even if it's not an official diagnosis, if the strategies work and reduce anxiety, they are definitely worth doing (in our experience).

It's actually PDA Awareness Day today (15th May). Lots of people are sharing their experiences on Twitter (if you ever go on there) - both from a parenting perspective and from people with PDA too.

BeyondTellsEveryoneRealFacts Sun 15-May-16 15:17:36

That was actually what made me ask - i saw a post shared on fb and it resonated even more than it had last time i was looking at it.

If the strategies in the book work, i'm not too bothered at all with a diagnosis right now smile

BeyondTellsEveryoneRealFacts Sun 15-May-16 15:18:29

Jekyll and Hyde! Oh yes!

AliceInUnderpants Sun 15-May-16 15:24:33

Is it possible to have PDA and be compliant at school? Aged 8.

PolterGoose Sun 15-May-16 15:25:56

Yes, absolutely, behaviour can be very different at home and school.

Marshmallow09er Sun 15-May-16 15:29:24

Yes ^^ as polter says - a lot of the stories today are about masking and the struggle to get support at school as they hold it together then explode at home.

Marshmallow09er Sun 15-May-16 15:40:16

Oh - and even though DS is very demand avoidant at school too - even when they thought he was coping he wasn't really and by giving him more support / the right strategies at school his demand avoidance at home has lessened too

PolterGoose Sun 15-May-16 15:44:11

It makes a massive difference if school believe you and put support in place even then they can't see the problems.

AliceInUnderpants Sun 15-May-16 15:46:32

Thanks. My DD fits very closely to the PDA criteria. I'm having problems getting anyone believe she would even have 'just ASD' due to the fact that she masks at school and explodes at home.

Can any of you point me towards the official 'evidence' for masking that I could present?

PolterGoose Sun 15-May-16 15:55:16

Good blog post here with some good links

BeyondTellsEveryoneRealFacts Sun 15-May-16 16:10:00

Thank you all smile
DH did the questionnaire, missed a few questions out but still got a rather high score. Looking forward to reading the book

PolterGoose Sun 15-May-16 16:12:18

If you want a heads up the author has a website:

Lives in the balance

BeyondTellsEveryoneRealFacts Sun 15-May-16 16:15:40

Brilliant, thank you!

Ineedmorepatience Sun 15-May-16 20:08:43

My Dd3 has a dx of Asd and she has always been significantly demand avoidant, I always thought she was too autistic to have PDA if that makes sense but as soon as she hit puperty I became more convinced that she fits the PDA profile. I wont try to get her diagnosed because I dont have the energy for the fight.

The more I read about PDA the more I realise that I fit the profile too and that makes getting a diagnosis for me even more complicated.

Learning about Asd and demand avoidance has made me a more creative parent than I ever could have dreamed that I would be. Sometimes it would be lovely to just be able to ask Dd3 to do something but then I guess that would be boring and boring is something we definitely not! grin

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