Do lots of people on the spectrum find demands stressful or is this really something which sets PDA apart

[Corrimony]

Isn't it very common for autists to find demands placed upon them stressful?

Do those that manage to cope with demands still find the demands stressful but find ways of coping with the stress - or, do some really enjoy routines and order imposed on them by authority (perhaps finding the structure reassuring and calming)?

I have long since come to terms with my DS's ASC diagnosis but I'm not sure I'm comfortable with the PDA label people around him are increasingly using - even though some of the strategies are great. Just trying to figure it out in relation to other ASCs.

I'd be so interested to hear your thoughts!

Well that's what I'm saying. I'd just expect people to be angry if you called them that. So I'd never, ever risk it, even if you convince me of the intellectual case.

Any more than I'd call someone spastic and hope that was fine with them.

Yes. It was even used as a smear against Gordon Brown. It happens in all walks of life.

Anyway, hopefully we've established that I wasn't being threatening 😄 so I'm off.

I have read everything I can find about PDA recently because I am struggling with Dd3's demand avoidance and also my relationship with demand avoidance! She has a dx of Asd, I dont.

I genuinely believe that it exists and that some of the people who used to be diagnosed with A typical autism fit the profile for it! Dd3 struggles so much with demands, even those she places on herself. PDA strategies are helpful and I am undecided whether to spend £1000 on getting a formal dx for her but it has such a huge affect on our lives that I am considering it!

I think it plays a large part in why she is out of school and any setting she may return to at any point is going to need training in how to manage her anxiety and consquent demand avoidance.

At the PDA conference the speakers showed a diagram where Asd was over arching other conditions eg Aspergers, Pda, classic autism. One speaker even said the "experts" wished that Elizabeth Newson had called it "Newson Syndrome" instead of Pda! And I think that may have helped to be honest!

On the whole though I agree with Polter in that all of the conditions overlap and we should be supported to find the right strategies for our individual kids or for ourselves rather than for a particular diagnosis or set of diagnoses!

Sorry, the word autist automatically just slipped out when I was typing in a hurry (should of stopped to think about how it was widely percieved), even though I don't use it when talking to people ordinarily. Last year, at a conference, some wonderful, creative autistic young adults were using this term to refer to themselves. They seemed to have adopted the term as part of a very positive identity. I guess since then I have liked using the word in my own head when I think about my son because to me it sounds like something happy and positive, and maybe a bit like 'artist'. My DS loves drawing, and it just seems to suit him, and it reminds me of the inspiring young people who it cheered me up to listen to during a difficult time. I'll be careful not to use it as a general term in the future, though, as it obviously it isn't right for everyone.

I prefer spergy fucker, myself.

I agree about the spectrum encompassing infinite variations. And it is not a very good name – I’m not sure anyone will ever be able to positively identify with it as their own diagnosis?

I think my main problem with it is that it seems so reductionist - how can you reduce something as complex an ASC to what is essentially one symptom? And where does it get you? If someone is demand avoidant, then why are they? If they fear not being in control, why do they? The PDA stuff I have read tends to stop at ‘fear of demands themselves’ as an explanation.

There could be so many different reasons for avoiding demands, e.g.: (for my DS): fear of making mistakes and not being able to do what is asked, or do it perfectly; sensory problems making him feel carrying out demands are difficult, particularly if they involve concentrating; he finds ways of calming his nervous system but other people’s demands are always interfering with his liberty to calm himself, so maybe he has learned to fear them; he has a unique way of learning about the world and making sense of the world and this jars with many of the demands that have been placed on him from a young age when adults have tried to teach him things – I could go on and on…)

Exploring those reasons leads me back into the other different profiles on the spectrum! Hence I keep getting lost.

Isn't the clue in the name? We all avoid demands, whether NT (can't be bothered to do the dishes), autist/autistic/aspergers (can't cope with following someone else's agenda/can't cope with unexpected expectations without time to prepare), lazy teenager (why would I want to do that???) or pain in the arse toddler (no way am I doing it your way when my way takes 10 times as long and will take hours to clean up).

What is supposed to set PDA apart, from my understanding, is that it's the very act of having a demand placed on the individual that causes the distress, rather than the nature of the demand, the timing of the demand, or the substance of the demand - just the fact that it's a demand is the problem.

So whereas for a typical 'auti', having clear and consistent expectations will help, that is completely unhelpful with PDA, because it loads a demand. Instead, strategies that allow the person to come to their own conclusion about the correct activity help (e.g. 'I'm going to put my shoes on so I'm ready to go to the shops.....' in the hope that the child will put their shoes on too, rather than saying 'DS, we need to put our shoes on to go shopping').

Rat

Re. PDA, ds2 is diagnosed ASD/PDA. If we use the correct strategies, the demand avoidance eases, although there are fluctuations and triggers which set off mega demand avoidance.
Ds1 is undiagnosed, but fits the reordered criteria (ie. Not the original criteria) perfectly. We can never (and have never been able to) give him demands, he treats his siblings like inconvenient characters who need to be directed to do everything, this doesn't fluctuate at all. He fits ASD as well.

I don't think it needs to be a separate diagnosis as such, and actually I think that would mean fewer people took it seriously. It should be part of a diagnosis though, because it's vital that others can understand that the usual ASD strategies probably won't work with some children, so as such it's a useful "label" to have for the child.

As for autist, I love that word, and identify as an autist. It's a lovely sounding word.
IME some parents can be very sensitive about not letting ASD define their child, which makes autistic and autist sensitive words, but I think this is possibly led by some professionals who insist that ASD is only a tiny part of someone, and many ASD therapies aim to take away the autism.
My diagnosing psych told me that having ASD was no different to having blue eyes - I can't begin to tell you how wrong this is, ASD affects everything I do, I can't separate it out, and finally understanding this has improved my life no end, in fact for the first time ever I have a ten year plan that doesn't rely on winning the lottery, this has only happened because of my diagnosis which I am happy to be defined by.

I think that every kind of demand can be overwhelming for some people Corrimony and you are right demands come in many shapes and sizes.

Being in control enables me to reduce my anxiety so avoiding demands which remove that control helps me to feel calm!
Sensory overload cause me to feel unwell so I will avoid that as far as possible!
Following rules removes my control and therefore makes me anxious!
The list goes on and on!

As an adult I have more chance of regulating the demands that are made on me and I am also "allowed" to have reasons why I cant do something.

Children just dont have that option really do they! They are surrounded by demands all day everyday and external factors which cause anxiety!

Since we have been home edding we have been able to reduce the demands that we place on Dd3 to a bare minimum and the result is a much less stressed person. This isnt an option for everyone but demands could be reduced at home.

Good luck

I have a degree of demand avoidance at the moment, probably due to burnout.
Any demand, or implied demand makes me feel incredibly anxious. If it persists I end up crying, or snapping, or walking away.
I've chatted to ds1 and 2 (during relaxed moments) and they both confirm that they feel the same.
It's weird. Sometimes it's that the demand is too much physically and mentally (even if it's "go and get me a drink") and sometimes it's extreme resentment that someone is asking me to do somthing.
Seeing it from my own perspective has helped a bit to understand my boys, even though mine isn't anywhere near as extreme as the boy's demand avoidance (particularly ds1).
I do believe it's definitely a thing, but with more overlaps.

Last sentence doesn't make sense. It's a thing but not on its own I don't think.

DS is autistic and that's his diagnosis (well I think 'autism spectrum disorder'), but when I read about PDA it was like reading his autobiography - he genuinely displayed all of the characteristics described and it was far more fitting than anything I'd read previously when I just couldn't quite see him in any of the descriptions.

But it was things like fixations on people - DS does this - both positive (e.g. possessive of them) or negative (will attack them without perceived provocation but often trace it back and there was something historical that causes his fixation).
That made sense under the PDA description and I hadn't come across it before with say, Aspergers.
Also the part about talking through a toy / character as a way of letting himself participate.

However I don't feel an actual PDA diagnosis would change much - we all fit the strategies we use bespokely around him anyway at home and school.
He is autistic and he identifies and embraces that about himself - and it helps him understand and explain why he finds certain things hard that other kids seem to take in their stride.
He's actually far less anxious / much easier at home; TOTALLY demand avoidant at school because of the environment.
So the avoidance is far worse when anxious (altho the need for control is present at all times, but I think we've just got used to that at home now and it's second nature to us all)