PDA Diagnosis

[SilkStalkings]

DS(3) has PDA, I am convinced, paediatrician suggested it and referred him to CAMHs in April. I went to a conference with the nation's experts speaking and it was brilliant, they said that it can be DX'd anywhere that does ADOS and ADI-r autism assessment as long as the practitioners know what they are looking for and are prepared to look foolish trying to get the kid to comply. And they said that DX is really important for obvious reasons.
CAMHs rejected us on account of having more difficult kids on their books so I asked paed about getting an ADOS at least. She discussed DS at the City Autism Liaison Meeting and they have said there is no assessment service within our provider but a nearby private facility. However they felt that assessment wouldn't 'be terribly helpful at the moment as it will not help with the management' and that he will be managed well at the infant school he starts in Sept. I disagree with this because since we heard about PDA we have changed our 'management style' to suit it and his behaviour has improved. Also, although he may well behave well at school, if he doesn't he will only be 'managed well' because I will have educated the whole bloody faculty about the subject. DX is not just about his education, it's for the whole family - for me to support and defend him convincingly when needed over the years, for his siblings to understand why he is such a little bully, for DH & I to keep up our morale and the calm required for him to learn decent behaviour and for his own self-esteem eventually. I feel like I know more about PDA than this bloody panel do.

My question is, do we have the right to get the local trust to refer him/pay for private assessment? Can I push for this? I think it would be money well spent considering most adults with diagnosed PDA are in prison. If we can just get the DX we will be so much better placed to fight for him and support him.
Has anyone had a DX just from a paed meeting their child?

It is notoriously difficult to get a PDA diagnosis. Many professionals don't categorise it as a 'diagnosis' anyway - they say it is simply a part of the autistic spectrum. Lots of disagreement among the academics about this.

Have you been in touch with the Elizabeth Newson Centre / Sutherland House in Nottingham? They are the experts and will assess for close to 3k. We are considering proposing that our L.A pay for our DS's assessment (Asperger's but suspect PDA). But we are a long way down the road from you. DS is 7 yrs old and is at his second school and perilously close to being excluded. Sadly, our long, rocky journey counts as 'evidence' (or ammunition) in making our case that the L.A should pay.

If you can get ADOS, go for it, if only to rule autism out.

Has your DS got a Statement? This is something you should definitely be considering.

I hope someone else comes along with some better and more hopeful advice.

I only know one person whose DC was dx-ed with PDA and obviously all children on spectrum are different. But I can definitely say that there is no way her DC would have been 'fine at school whatever the management'. she has had to home-ed as her child would no more conform at school with/without management than she would at home. Said child won't even respond to a positive demand 'go and get an ice lolly out the freezer'. Without a dx I don't see how a school would possibly be able to cope.
My DS has AS, which as hints of PDA in it - throws himself on the floor etc to avoid demands etc but being AS he is able to conform to the rules in school (he sticks to them soooo rigidly that he has panic attacks if other children break them) but can therefore 'be managed' at school aside from his anxiety attacks.

IME children without Dx dont get such good support at school as those with one.

Teachers are not particularly well trained in special needs, so if they get a child with difficulties but no DX they can easily make mistakes.

I have done a bit of reading about PDA and what I read said that children with PDA dont always respond to strategies used with children with ASD but yet they can display similar behaviours.

I really think you should push so that you can spell it out very clearly to school staff when he starts.

Good luck

Thanks, yeah PDA kids can often cope at school and DS seems fine at pre-school.
I'm just gobsmacked because it was our paed who suggested it and this panel is writing things that are contradictory to the nature of the condition. So we have no DX of anything, no proof of ASD even though it is one. I'm pretty confident I could train up any teachers etc on the subject but it's going to be hard when I have no proof, just a 'naughty' child and look like I am making it all up or have Munchausens by Proxy! Grrrr.

I wouldn't go actively looking for a PDA dx. As Bezzie said, even the profs disagree as to whether it's actually a valid dx. It doesn't appear in the 'Bible' of dxs - the DSM IV.

Look for an ASD dx instead. The little bully behaviour could be the rigidity of thought that occurs in ASD.

Personally I think the PDA dx is very unhelpful as it implies the individual is cunning, controlling and bordering on sociopathetic. I would hate any child of mine to be labelled in that way.

But if you're determined to go down that route the Elizabeth Newson Centre is the place to go (she invented it) or some places in the SE will dx it.

Just be prepared for having to explain constantly what the condition is all about.

Locally they refuse to pay for PDA dx as they say it doesn't add to what they already know about the child and isn't worth the money. That said we also currently don't have a NHS pathway to diagnose any child with autism either - so my area may not be entirely typical. They have said secondary / tertiary dx are for complex cases (by which they mean a number of overlapping dx) not for where a parent thinks there should be a secondary dx or there is just uncertainty.

Our GP has set the ball rolling for the funding for Elizabeth Newson centre.

Deviant did you bypass the paeds and CAMHs etc and just ask GP to fund it from his own 'pot?'

I know the Newson Centre make money from referrals (and selling their book) but they are also the ones doing the research and studying it and would therefore know more. Maybe I really do know more about it than the local autism panel simply by having been to the conference!

Hi Silk, there's a load of conflict around my son as he is complex and challenging anyway. He already has a few dx's primarily being down syndrome, 11yo and severe learning. He has been out of SS for over 2 year signed off with school phobia, social phobia and autistic traits, camhs will treat him as an autistic kid but are not prepared to diagnose him. His cardiologist and GP as well as the SW, respite and a few others including the behaviour team feel he should be diagnosed with ASD and PDA. So instead of continuing to hit brick walls and no one to be able to help him the GP has took this on board. If they are unable to help him we have 2 more routes but then thats it everything exhausted. He is an unmanagable child with many problems and threatened to be institutionalised on many occassions, which isn't gonna happen, someone somewhere should be able to help him.

As for a pead, we don't have one atm even though there is a down syndrome protocol to be followed. As he is not in school the new pead won't accept him but the old one doesn't want him either so between them they sent a letter out stating I had asked him to be dismissed from the NHS service. It's now in the hands of the top dog.

I think you may have a very hard time convincing them to fund a private referral at your ds' age. I am sure you'll get watch and wait for quite some time yet, especially if his difficulties are not very severe.
What exactly are your ds' issues? I know that although now we are totally convinced that our ds (6) has PDA, at 3 we had no idea. He had been a typically PDA passive baby and toddler, it was only around his third birthday that we started to see any 'behaviours' emerging and it took us about 18 months to work out that PDA was behind it.
Do you think that your ds could potentially fit the criteria for ASD? Our pead suggests that atypical autism would be a much more useful diagnosis. I think it would be very much easier to find someone happy to diagnose that rather than PDA, and I think possibly in schools staff might find it easier to take on board a recognised condition.

Thing is he's not 'normal' ASD, PDA is a separate ASD in itself. Everything about PDA fits him, he has this automatic 'No' response, like selective mutism but noisy. He doesn't learn from experience and has 0-60 meltdowns about ridiculous things, often things that he wanted to happen but was compelled to say/do/react in a negative way because it wasn't his idea.
However, since we've heard of PDA and changed our parenting to suit it, his behaviour has improved and when he's calm he can learn. I've watched him act out getting his way like an OCD ritual before he submits to what we want and this week I was able to distract him during a tantrum build-up (he wanted to raid the fridge for more Frubes) and get him to suggest a compromise himself (a hardboiled egg!) The Newson people at the conference basically said to stop trying to do normal parenting or normal ASD parenting (our DS1 has AS and none of those methods work on DS2.)
So we have a theoretical diagnosis that has already proved its usefulness, I'm just shocked that I can't get a piece of paper to prove it! I feel like I've come back down to earth with a bump.