PDA any recent experience of getting diagnosis?

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Hi all,
Things have been difficult with my dd who is 6 particularly since she started school and I have been struggling to understand what the issues are as the teachers seem to be baffled and keep trying different strategies...I knew some of her tears were asd but not all and on reading the pda info all of it could have been written just about her so I have made an appt with the gp but in the meantime reading around the subject and wondered if anyone had any recent experiences of getting the diagnosis. The cost for private assessment from what others have said would be too much, and I'm worried we won't be taken seriously or will be dismissed as we are in Cumbria and their record of health service, particularly of mental health and things like asd is shocking... Any word of wisdom and insight will be greatly appreciated TIA x

Traits not tears - the tears are mine over the sheer frustration of it all!

I think at the beginning of your journey all you can do is read and arm yourself with as much knowledge as you can.
Be determined and assertive when you go to your GP and remember there is a very high chance that you already know more about PDA than he or she does and you definitely know your Dd better than he or she does!

You need to get an appointment with a developmental paediatrician or at CAMHS depending on what the pathway is in your area for ASD because it will be the same for PDA.

You could try to research local paeds or psychiatrists/clinical psychologists so that you could go to the GP with a name, I have found that helpful in the past.

You may be able to get help from a local (ish) Autism support group, parents are a wealth of knowledge about services. Try facebook.

Keep coming on here and ask anything you need to know.

Good luck

My authority still say absolutely no to making dx of PDA and refuse to recognise it. Maybe try to find out your County's stand on it so you are prepared?

Thx for the replies. Am just sat in tears currently after another huge argument with dd over trying to throw away a plastic fruit tray! Just feel so drained from the refusals and then the constant 'words' with after school club and teachers. The latest thing they have to say is can we try and sanction her more e.g. Take things off her at home, for her behaviour at school as missing play times etc. doesn't work. We have been fully supportive of school as they know but I honestly don't think this is the answer. I work full time and we have no family nearby so it is 24/7. We both work in education so we know and have tried just about every behaviour management trick under the sun- at least i now realise they won't work!
My health is suffering because of it as I believe I am addicted to food and have been overeating a lot recently through the stress. I have ordered a book on pda to hopefully find some new strategies but I do feel gutted that she won't be 'normal' and I worry about her keeping friends, her future in school, everything...
charles which lea is that if you don't mind me asking? I am hopeful ours will recognise it as through my work I know that there is at least one child diagnosed with it...who would you contact to check this tho?
I just want people to see past the behaviour And realise it isn't her upbringing that makes her like this. patience thx for the advice, I have the early help forms from school at home - I basically insisted that they register her on SEN list although it is currently on as EBD - and the notes fit completely into the pda indicators. I am going to take copies and highlight and also add anecdotal stuff from us. I'd like to get a private dx as well but don't think we can spare the huge amt reqd...as even if we get a referral from gp is a massive waiting time I believe. Also got the job of convincing my dh of my belief as he wont want to see it as SEN I think...so many battles ahead it's daunting me.

I think that the Elizabeth Newsome Centre in Nottingham specialise in PDA and its diagnosis.

Have you looked at this blog? It's very informative.

understandingpda.com/category/day-to-day-life-with-mollie/page/2/

Somerset. I have come from an area that did recognise it and have worked with several children with it as a dx (I am a specialist teacher for children with challenging behaviour). The children's dxs helped me because I was able to read up on theories and strategies around it and, although the are difficult to implement in a educational setting, do work and enable me to at least feel forearmed for working with a child with this sort of profile.

Here I feel that a lot of professionals are just rather flummoxed when they meet children with a PDA profile and the outcome isn't that pretty!

I would ask somebody on the team in your authority who give ASD dx as it will be the same team diagnosing PDA. Either CAMHS or paediatricians at the hospital.

Have you had a meeting with your SENCo? I would do this and also go to your GP and explain everything and insist that you want to start the process of looking for underlying causes.

Sorry- I see I have repeated a lot of what Ineed said there- and she said it better!

Much sympathy

I think that there are two things which we have tried that made a huge difference with 'difficult' behaviour,a TEENY understatement there.

We use a 'first,next'then' dial which we hand over to ds and that way he has some control over the order in which things happen. He really doesn't understand consequences,they just distress him.

Mini pecs boards- look for them on amazon or go direct to the company which makes them. Ds needs to be shown what is going to happen and needs to be shown what kind of behaviour is expected. I don't really understand why showing cards makes a difference but it really helps.

Hope that school pull their fingers out and start the assessment process,honestly giving her more sanctions is not going to help her! Regarding private assessment I wonder if it's worth having one assessment done and then having further work from the consultant if & when you can afford more? One of my friends has done it in tiny bits when she can afford it.

Good luck

Hi all, thx again, it feels good to be able to have a discussion that does not stem from the idea of fixing did behaviour! charles I may be able to contact one of the asd specialists in the lea through contacts in work so will look into that on Tuesday, waiting funnily enough I have been reading some of this blog today! And I may contact the Nottingham centre if I can establish whether the lea will accept private dx - might even do it anyway for my own sanity! In the last meeting with school I hadn't made the link with pda so the discussions centred mainly around emotional and social support that they thought they could provide, but I have to contact her to re-arrange a review meeting so I may mention it tentatively then...we did actually discuss how many of her traits were asd related but she maintains strong relationships with me and dh and wants to be social - although doesn't seem to be able play without being in control, can't empathise with her friends etc. etc., which of course makes sense to me now! The senco seems to be approachable so I will bring it up. Mainly I feel that a dx would mean they may offer a bit more support of her, but also it might coerce the teachers and headteacher, who has a real problem with dd because she doesn't recognise his authority, to change their behaviour rather than expecting her to change hers (might be wishing a bit much there though I suppose!). Thanks for the suggestions guggenheim something else for me to look into luckily for me I can do some of my research at work as SEN is basically my job (am not a senco tho) and we are due to get someone with similar issues next year so has a dual purpose!

Another thought, do you have a local branch of The Autism Soc in your area? We have recently been completely wrong footed by our 12 year old dd who is school refusing, incredibly anxious, showing OCD traits and all sorts of other new and not so new behaviours. I didn't even realise how Aspergers, PDA or any other parts of the spectrum can manifest themselves. We are currently starting the dx process and wondering what we will find. Gone off at a tangent there... What I was going to say is that Autism West Midlands have been nothing but helpful when I have been in touch with them, offering all sorts of suggestions.

Sorry for rushed reply, trying to sneakily type before dd spots me....

I'm at the beginning of the same journey - ds is 6 and in yr 1 - a few people have suggested asd before but when I read up he didn't really fit the standard profile - he is articulate, imaginative (loves roleplay), an expert at negotiation and procrastination... I had another search online on Sunday and discovered pda and it does seem to describe his behaviour well. By chance his teacher asked me for a meeting the same day I approached to ask if we could discuss this and she is keen to try some of the suggested strategies from the pda society website and has suggested we meet the senco. Whether it will be worth trying to get a diagnosis or not I don't know - I have started keeping a record of observations/descriptions of situations/conversations so I have some written examples of behaviour as evidence if school or we think it will be useful to go down that route. I hope your GP visit is helpful and constructive

Just wondered how you were doing.
We have a diagnosis of AS, but NAS support have just told school they see it as more PDA.
Just wondered what was going on your end?

newlark your ds teacher sounds very supportive, which is good. chaise I'm ok thx, although was a really tough start of the week as dd got into big trouble at school for threatening another child - don't want to say too much on here but she apparently made a (completely unsubstantiated) comment that she had something in her bag so the school isolated her from class for the whole day and the head was saying if she was older they would look at excluding her I don't think that could have happened as a) she didn't have anything, b] she has said she was copying what someone else said - which she has picked up a lot of unpleasant phrases from the school I have to say - and c) she didn't touch anyone, there was no violence involved at all. But it has shook me up and we had to explain to dd very explicitly why you don't do that - this I think is the autism presenting, she genuinely didn't understand the issue until me and dh explained to her very calmly. But I feel frustrated at the school who say they agree with me about the asd but don't seem to be taking that into account when they are dealing with her behaviour!
Anyway, since then we've had the usual issues over bedtime and going to school but nothing else as dramatic. On the plus side, the after school club she goes to have been very good at adjusting how they deal with her, letting her have calm down time, and then explaining to her like we do, and they have said it's going really well :)
GP appointment went very well - I took info from school and had written down my observations, and they readily agreed to the referral to paed. we are waiting on that letter now, but the GP did warn me that they have some people who have been going through the diagnostic process for 2 years...but my main aim currently is just to keep changing our strategies up to cope with bedtimes and getting to school as they are two main issues we have. Also, sadly, she has refused to go to her dance club for most of this half term and just seems to only be happy when at home with us in her comfort zone atm. I'm going to email the dance club and explain and see if we can try again after half term, as I really don't want her to become any more isolated than she already is.
waiting thx for the suggestion re local NAS. I was just a bit nervous how they'd react to the PDA as she is so atypical when it comes to autism...may give it a go though.
phew! that was a long one, hope you are all ok.