New and useful booklet on PDA

[Jacksterbear]

Here

Posting in case it's useful for anyone else.

I found the initial description on p.5-8
really accurate (my 7yo DS has a dx of ASD with a PDA profile) - particularly the stuff about coping fine with one situation but totally falling apart in a seemingly similar situation on a different occasion.

Also the explanation of demands including self-imposed expectations (p.8) - I've been trying to articulate this for ages but haven't seen it expressly acknowledged in any of the stuff I've read before.

That's excellent, Jackster. I'll be sending a link to DS1's school. They went on some training, last year - and now they've met DS1!!!!

Nice comment on the term "labelling" in there, too.

DS1 scores 60 in that screening quiz!

Ooh thanks Jacksterbear - really useful! My ds has a similar profile (we had PDA added to his ASD diagnosis). I found the description of appearing to cope with the first couple of years of school then a sudden, rapid decline / multiple exclusions particularly apt...

Interesting about the self-imposed expectations.

I scored my DS at 60 on the quiz as well...

Glad you found it useful ouryve and currer. I have sent it to DS' SENco too!

I've scored him at 58 on the questionnaire.

Yes, same re getting through the first years of school ok. DS got through pre-school and YR with only minor concerns and a scattering of incidents (although terrible separation anxiety from the start) and then went to pieces in Y1, exactly corresponding with the change from lots of free play to much more structured learning (incidentally my friend whose DS, in the same class as mine, has an Asperger's dx, says her DS was exactly the opposite re this change, ie much better with the greater structure).

How is your DS getting on now currer? (I was on your thread a couple of weeks back re bad start to the school year!)

I've scored ds2 at 47 which is pretty much what I expected - a lot of PDA traits but not a complete fit for him. Mind you he is right at the border between the two age groups so in a few weeks he would be rated differently.

ds1 scores a lot lower (33) again pretty much what I'd expect. Mind you if I'd scored him whilst he was in mainstream two years ago his score would have been a lot higher as the more stressed he is the more rigid and controlling he becomes.

Ds2 scores 56 on that.

That's really interesting, thanks. I scored my ds quite conservatively as he is in a good way at the moment and he still got 47. In a bad patch it would be much higher.

Jacksterbear, DS is getting on better thanks - feeling more positive now we have heard he will be getting a statement! I hope your DS is getting on ok too.

I think the hardest thing for DS's teachers to understand is his lack of consistency. He flips between being different moods (and personalities) so unpredictably. Reading the info on PDA makes sense of a lot of our school experience so far...

Sounds hopeful, currer. Totally agree with you re inconsistency and lightning-fast mood swings! Tbh that's probably the hardest thing at home too - utterly draining and you can never relax even when things seem to be fine!

Thank you, that's an amazing link. I scored DS at 63 which doesn't surprise me as the light bulb moment came when I read one of the previous leaflets (although we only have an asd diagnosis as they "don't diagnose PDA" )
I'll pass it onto the Senco and his teacher, glad to see this is being publicised more and more.
Agree with it being utterly draining with respect to mood changes, we truly never relax.

ooh, that's handy. DS only scores 30 and I think that might be a bit generous. next time I describe his problems on MN & someone insists it must be PDA I'll have something to brush them off with, thank goodness.

Where is the screening test? I found this booklet very informative and confirmed a lot of what I suspected but I can't seem to find the screening part. Can anyone help please?

P.30-31 of the booklet, lacksdirection.

Thank you. Will take a look.

I scored DD at 60 and I suspect the professionals involved with DD would have scored her the same or higher.
Unfortunately our local health authority only assesses typical autism so we have, and continue to struggle to get a diagnosis of any description.
I wonder how it's possible to have an assessment under the NHS if your local authority don't recognise PDA?

Has anyone tried the PDA-questions on their kids who seem Definitely-Not-PDA? I get 15 & 16 for 2 DC who I generally rate as my compliant-easy-ones. That helps puts scores in context, too.

Lacksdirection - DS1's official diagnosis is ASD (which CAMHS describe as atypical) and ADHD. Once our LA autism advisor got to know him, she concluded (as I had long ago) that we needed to work with him as if he had PDA. Our private OT asked if he had a diagnosis of PDA, after working with him, as his responses were so typical.

I'm happy to keep his current diagnosis. It fits well with many of the deeper seated problems that he has, but behaviourally, he needs to be treated as if he has PDA, or else he feels out of control and panics or angrily rebels. I'm with Lorna Wing on that issue.

ouryve That's interesting. Do all of the people working with your DS accept and use the strategies that are recommended for dc with PDA?

Our main issue is that we cannot get a diagnosis of any description. I would have accepted a diagnosis of ASD with PDA traits but so far, we have no diagnosis at all, which means multiple lengthy explanations of DD's needs and capabilities, and despite those lengthy explanations, with no diagnosis, many health professionals take the view that because DD has seen more than a couple of paediatricians and they haven't diagnosed a medical problem, then this is a simple case of needing boundaries and implementing rewards for desirable behaviour.

Interesting; DS 'only' scores 31 (aged 14 so threshold is 45) but he is in a specialist autism school who agree he is demand avoidant and have mentioned PDA, his EP felt he should be assessed for PDA too although I never felt it really matches him. It's a useful booklet though, although I was a bit at the caption on page 5: 'What does a child with PDA look like?'...underneath a group of entirely white children (and only one girl in 5)!

They soon, twig, lacksdirection! He's in a very PDA friendly school, now and he's engaging a lot better than he did in mainstream. His teacher has discovered simple things like he refuses to read out loud from a book, but will do so from a screen, because that's different (he was put off reading from books by a rather inflexible teacher, way back in year 2. He was a prolific reader, before then, but her attitude made it into an expectation, rather than a source of enjoyment).

I suspect we might have fallen foul of the same box ticking nonsense if DS1 hadn't had an early diagnosis of ASD-and-a-bit-of-a-whirlwind.

Thanks for this link

We've got an urgent annual review this week, and I intend to print this out and highlight where the school haven't met his needs!!

Ds2 has his assessment coming up, will PDA come into it, or should I print out this booklet and give them a copy, because he mostly fits the profile.
Or would it look like I'm trying to tell them their own jobs?