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!

It is so interesting to hear from from people first hand about why demands are anxiety-causing and what it feels like...

Oh, I have obsessions with people too Marshmallow. It's quite inconvenient at times!

Marshmallow, it is always brilliant to find something that fits and explains things. For my DS, he is definitely demand-avoidant to a pathological degree when he is anxious, and some of the other stuff really fits - but not all, for example his fixations are not about people (there’s been computers, maps, machinery, electricity, animals – to name a few!), and there was no language delay. He loves role play and fantasy though, and has issues drawing the line between them.

Every person ticks different boxes!

Dd3 isnt physically violent which can be a big part of PDA but she can be verbally agressive and has a quiet will of iron!

That was another thing that was made clear at the conference! As with every thing every person presents in their own individual way!

Corri, some of the more prominent PDA researchers are currently reordering the criteria, language delay has (or will be) relegated to "may happen".

I went to a presentation by Dr Hilary Dyer, and I think the current criteria they are working towards is something like:
Anxiety which presents as a need to be in control
Surface sociability
Resisting ordinary demands
Emotional regulation is not good
Sensory processing issues

I'm sure there were some more, but I can't remember, will look out the handout tomorrow.
Role play, language delay and passive early history are sometimes seen, but not always.

Thanks Cloud, that's interesting. Not sure specifically what they mean by passive early history, but I think DS was about as far from passive as you could get (incredibly sensitive to everything, restless or intensely absorbed, hardly slept, needing constant attention to sooth him or distract him when he got upset). Has the main ones on your list though.

Wikipedia "people-first language" article nails it. But the link won't work

en.m.wikipedia.org/wiki/People-first_language

That's a good article, thanks MeirAya/Chronically.

DS is autistic and finds demands incredibly stressful. Always had.
Homework was a horrible nightmare when he was little (it didn't help that they made no attempt to differentiate)
I kind of think of PDA a bit like Auditory Processing Disorder in that it goes with the territory.
DS had a dx of APD but he got that before his ASD one. I wouldn't have bothered if he had got the ASD first. Doesn't everyone with ASD have a degree of APD? (genuine question).

I remember working with a child who eventually got a dx of ASD but I think they fit the PDA dx like a glove. It was the main feature of their difficulties. It really jumped out at me. I got alone beautifully with the child but school clearly disliked them.
I never once had a problem at home with them and their DM was a genius at managing their behaviour.
School had the child on 2:1 whilst still in nursery

I still think of them and how shockingly they were handled. Where ever they are their mum will be fighting their corner. She was amazing.

Some degree of APD for DS too, I think Namechange. It does sound like the demand avoidance is extremely common. I'm really curious about the mum who was genius at managing her child's behaviour. I would love to feel that about myself at least occasionally! Can you think of an example that stands out in your memory, or summarise her approach, however briefly?

My daughter underwent assessment at the Elizabeth Newson Centre last year and they were very clear that demand avoidance is common across the whole of the autism spectrum and that it is NOT the defining aspect of PDA. My daughter was actually given the diagnosis of Asperger's with anxiety related demand avoidance. The report then set out that she needs PDA strategies and directed us to the PDA society etc. (All of which we were already doing).

I think the whole PDA debate actually reflects the evolving nature of our understanding of the autism spectrum. When Elizabeth Newson first identified this group of children, the asd 'world' was a very different place. Already, PDA has moved from being described as a separate disorder to being recognised as part of the spectrum itself. I think it was vital to define it specifically at the time because the recommended strategies were so different from both a 'typical' asd approach and standard NT parenting. The pathological part of the name is to emphasise that the anxiety and avoidance of demands is inherent in the child - the child is born with it , it doesn't result from trauma or bad parenting (but of cause would be affected by other factors)

There is now a much greater acceptance that a spectrum disorder can manifest in many ways including anxiety related demand avoidance. For some people that anxiety is reduced by structure and routine, and for others it's by exerting complete control. And of course for many more it is a mixture of the 2 which varies depending on all the factors that effect the individual.

My personal hope is that ultimately the diagnostic process becomes fully dimensional and that the only diagnosis is ASD / ASC, followed by a description of the individual at that time which would help identify the most suitable approach for that individual - including what are currently known as 'PDA' strategies.

I know from the discussions I have had with the ENC and other PDA professionals that there is ongoing debate around all aspects PDA diagnosis so it will be interesting to see what transpires.

I just hate the term "pathological demand avoidance"; to me it reads like medicalese for "lazy because bad person". I'd prefer ADA, Autism-related/Autistic Demand Anxiety. Or something, maybe just Demand Anxiety, or Demand Anxiety Disorder.

So you'd end up with "ASD with demand anxiety, sensory integration and developmental coordination problems" or something.

Corri I suppose I am comparing her to the school.
This child obviously felt an extreme need to be in control.
Demands upset them and made them anxious.
Mum kept the demands to a minimum and was always calm when placing any demand or restriction on her child.

Whereas the school couldn't look at them without demanding something, putting an obstacle up and it was obvious that they didn't like them.
When I was trying to get an idea of the child's level of understanding they said ' its impossible to tell'..

It bloody wasn't.
They also had a tag team of TAs following them and 'swapped them over every hour because its so tiring for them'.

This kid liked nothing better than having a legion of TAs at their apparent beck and call!

Mum was understated, unwavering in her knowledge that her child was NOT bad and managed to keep necessary boundaries in place.

EG. The child could run around the house as much as they wanted to. Climb up on the kitchen counters to get a knife - no, come down and have a drink.
The school were convinced the child had no discipline at home but I knew different.

To be clear, this is about a child who would be nearing the end of school now and when I knew them they were pre-primary and primary. I no longer work in that job and certainly would discuss work families.

Something like that autisticrat. I don't see the point in angsting over specific syndromes. I think it encourages people to think in generalised terms rather than look at the individual. And as for the PDA name it's self, I have suggested to people that they think of it as Permanent Demand Anxiety. Because even if the person with PDA doesn't avoid a demand, they will experience anxiety. And that's what is so often missed at school.

I agree completely, autisticrat, it does feel really negative to me, and your alternatives are much better. ASD with demand anxiety and sensory integration problems would be a really good summary for my DS to have on his paperwork.

Thanks, namechange. It's great that the child had you and their mum on side.

Feisty, I agree the focus should be on the anxiety not the avoidance. With the A standing for avoidance it makes it sound as the the condition had be written up from the point of view of the inconvenience it causes for people in charge.

Another thing I don't like about the way the condition is usually written up is that I come away with a sense of a manipulating and controlling personality. This seems wrong when I think of my DS. I don't think of him as a manipulative person, he only uses what they emphasise in the literature as socially manipulative tactics (like arguing, distracting etc) to protect himself from demands that feel completely overwhelming and scary to him - anyone would do that. He is not particularly interested in controlling other people either. He does can't bear other people controlling him.

I think that would be a good route for me to go down with Dd3 when I next see the paed!

I do think we need some reference made to demand avoidance in her records and on her EHCP when we convert it but it doesnt necessarily need to be a PDA diagnosis!

I dont have £1000 at the moment to pay for an assessment anyway and have little chance of getting one on the NHS.

We know anxiety is a big issue for her so something like "anxiety related demand avoidance" would be perfect!

My DD has an EHCP which details 'PDA' strategies despite not having a PDA diagnosis. They are simply the right strategies for her.
Ineed, I think more professionals would be willing to acknowledge a 'demand avoidant' profile even if they dispute the existence of PDA per se. I hope your DD's paed is one such!
My understanding is that the other main diagnostic manual (IDC) will follow a similar route to the DSM5 in removing the sub categories such as Asperger's. The NAS website alludes to this and already refers to a diagnosis possibly indicating a 'demand avoidant' profile. I wish you luck with it all.

ICD not IDC

Thanks feisty