Anyone with a PDA diagnosis, please talk to me about it!

[popgoestheweezel]

I need advice and your experiences of getting PDA diagnosed please.
We are sure that ds (6) has PDA, two years ago we were referred by our GP for investigation. We have seen the community paed three times now and they have referred us to SALT, OT and ed psych which were turned down because school has to do interventions first. He has had blood tests and they all came back OK (some borderline but apparently fine). They've also given us a GARS form to fill in.
At home, we give him a variety of supplements which have really helped, we're very careful with his diet and he does OT-type exercises twice a day for the last year which have helped too. But still he cannot cope with the ordinary demands of life.
At school, he has better times and bad times. He has attended a social communication group but that didn't make any difference. Initially we heard a lot about him growing out of it, then they told us he was sociable (i.e.. not typically autistic) so there was 'nothing they could do'.
Eventually, we wrote to the newly appointed head quoting from SENCOP about barriers to learning and failing to fulfill potential and he arranged for us to have a meeting with the ed psych. She gave us a CAST to fill out, in which he scored just into ASD territory.
On tuesday we had another meeting with ed psych, teacher and senco. The teacher said how worried she was about him and we said the same. The ed psych said that he had ASD traits but not enough. I have been politely mentioning the fact that we believe he has PDA throughout every meeting/appt we have but no one seems to take any notice!
Ed psych told us she plans to observe ds again this week so we have written saying that we are convinced it is PDA and that it will be hard for her to observe as children with PDA typically behave better in school then release the pent up stress at home.
So, what do we do next?

[popgoestheweezel]

Seen paed 3 times now and he is sympathetic but we aren't really getting anywhere. He has referred us to various services as I said but no joy.

[bigTillyMint]

I am guessing that he has been seen at the Social Communications clinic which is where children in our borough get diagnosed/not for ASD and other social communications difficulties?

[devientenigma]

I 2nd ENC

[Walter4]

The ENC are the ideal , however, PDA is becoming more recognised now. I would ask on the PDA contact group, there are some professionals there who may be able to advise you of where to onion you're area. I might also give ENC a call , they are helpful and could point you in the right direction. Assessment privately there is around 2600 I think.
Best of luck, I'm sure you will get there in the end :)

[AuntStressie]

What county/part of the country are you in?

[devientenigma]

We were assessed at the ENC via the NHS. The GP had to require the extra funding and it all went from there, so another way in so to speak.

[devientenigma]

acquire not require lol

[devientenigma]

We were going to see Daphne Keen, wonder if it's still worth a visit, just to see if she 'gets' anything ENC missed. However ENC were spot on with a lot of things with DS, he is also down syndrome and severe learning disability. They are also going to help get him the right support, so may sit and ride a bit longer. I mean another few month on 12 year won't matter?

[Walter4]

They were spot on with my son too and have be great in providing follow up help and advise as needed.

[devientenigma]

Walter do they provide ongoing support/advise or do they discharge you? just we are going back for a 2nd visit to discuss moving forward.

[Walter4]

They have asked to see us again in a few months, they provide ongoing support though I don't know if everyone gets seen again or not. I have contacted them by phone and email and always got great help and advise. The school can also call them ( they don't though:/) it was just lovely to be with people who totally got it!

[devientenigma]

we were only there about 2 weeks ago and we go back next week, they have been in touch by email a few times inbetween

[endoftherainbow]

We've had a dx for ds3 via camhs. ASD with PDA traits. It's taken a while as ds3 hasn't 'ticked all boxes'. Ed psych's aren't there to dx but advise school on strategies etc. As ds3 was an increasing barrier to his own learning we requested statutory assessment, separate to school making their request. Initially it was for behaviour but the category and hours are changing since dx. A child doesn't need a dx to get a statement but school need to be able to evidence strategies tried to date inc iep's. I'm guessing he's on school action + so if this isn't working he needs a statement. Check out ipsea and ace web sites. Think I've read on other posts that a developmental paed is needed rather than community paed. We had referral to camhs via our GP.

[popgoestheweezel]

We have thought about ENC, we are in Leicestershire so it's on the doorstep, but it is a lot of money.
I guess one of our probs is that he isn't on school action plus (unless he de facto is because the ed psych has seen him?) I don't think there are any IEPs either. The good/bad thing is that he is coping OK at school (although they know he's unhappy, he's not that disruptive) and other than in maths is ahead in academic terms so no alarm bells ringing there. Also, he really doesn't have any classic indicators of ASD- that was the point the ed psych made that it can't be ASD because he's very sociable. I agreed with her and pointed out that he does display all the diagnostic criteria for PDA but she just fudged that issue ,probably cos she hasn't got a clue what PDA is, despite me banging on about it to everyone 'in authority' for the last two years!

[endoftherainbow]

We're still at early stages but my vague interpretation from camhs is that a child can be on the spectrum I.e. they tick a lot of the boxes but not all of them. So, just because he's sociable this shouldn't exclude him from possible dx. There are a few posts around on PDA worth reading. Keep going. It can feel as though you're the only one 'shouting' with no one listening.

[popgoestheweezel]

I have had another chat with ds' teacher this morning after embarrassing myself by crying when ds punched me in the jaw (he has a mean right hook, it still hurts now) because he didn't want to go into school. He'd been kicking and hitting me all the way up the road from our house although luckily it's not far.
I told her we can't go on like this and she agrees. She has 25 yrs teaching experience and is head of KS1. She says that at the beginning of the year she was sure she would be able to work with him and help him acquire the skills he was lacking but now sees that the tried and tested techniques that have worked with every other child she's taught just do not work for him.
I told her that only PDA techniques will work and explained that I've already given the guidelines and info to his previous teachers in recep and in yr1 and gave copies to the senco and previous head. I have also given the info to the paed and asked for it to be put in our notes. But, as yet no action has resulted from anyone.
I said how frustrating it is to have the answer but no one listen to us, not even the ed psych. I will give her some info today and she said she would talk to the head. I think dh will go and see him tomorrow too.
Ed psych will observe him on thursday morning and dh and I have agreed that we will suspend PDA techniques that morning and just treat him like the average child ie. expect him to wash himself, dress himself, sit still to eat breakfast, put his own shoes on and carry his own bags to school. It's certainly not an unreasonable number of demands but we know it will lead to a meltdown.

[popgoestheweezel]

Thanks for the sympathy- it does help to know there are people on here who understand what you're going through, not easy to talk to those in RL who try to understand but can't really imagine it.

[Cornycremegg]

how long does the assessment at ENC take and how much does the child need to engage?

[popgoestheweezel]

Assessment apparently is four hours and play based, I guess the degree to which the child engages is the sort of stuff that they're looking to assess.