Camhs & PDA- how do we avoid going on a wild goose chase?

[popgoestheweezel]

Ds (almost 7) has PDA with no significant overlap with ASD. wWe know its PDA cos he conforms entirely to the criteria, responds well to PDA strategies/awfully to trad techniques (when dd aged 9 responds appropriately. We are trying to get an appropriate diagnosis.
We have already seen the comm paed 3 times and the ed psych has assessed. Between them, they have decided characteristics do not indicate asd so refer to camhs.
So, given that they've pretty much discounted asd and no one seems to have heard of PDA I am worrying that we will be interviewed to see how exactly we have messed up ds to make him behave like this. It will take forever to eliminate all the other possible causes this way, how can we avoid going down this route?

Go private

pop I am not sure of the answer but you are probably right to pose the question! If you do go private, this will certainly sort the wheat from the chaff, help you to feel actually supported (which is frankly all you really want) and save you a lot of stress, time, and heartache. Although for SA purposes might not get you far, but you can do in parallel with CAMHs snailspace type rigmorole. Is it the Elizabeth Newsome centre that specialises in PDA? Someone will correct me if I'm wrong.... an option for you?

I agree that the process through CAMHS is painfully slow and that PDA still isnt recognised by some proffs.

There was a poster on here a few weeks ago that managed to get her GP to fund her sons referral to The Elizabeth Newson Centre but I also know that that poster has been in an horrendous situation for many years.

Maybe you could try contacting the ENC and ask them about referrals or for advice.

I have to say though the wheels do turn very slowly, especially for complex children who dont easily fit into boxes. My Dd3 does have ASD but some of her issues are very subtle and she works very hard to fit in at school. This meant that getting a diagnosis took 3.5 years.

Good luck

I've just spoken to someone from pdacontact,
Go on their website and ask if they know the best route to go down in your area. The person I spoke to was really nice and gave me a few tips on how to approach getting started in the diagnostic journey with dd.

Good luck
X

It is the Elizabeth Newson Centre. They are fab. I was also lucky to get the GP to apply for the extra funding for the assessment and go the NHS route. Apparently I was told they are prioritising NHS funding over private funds. I was also told they were being inundated with cases. The PDA contact is a great place to start, they also have a forum you can join. I don't post much as the few times I have I didn't get replies. They can also put you in contact with other parents. Something else that hasn't worked for me as the nearest DC who has down syndrome and PDA is over 300 mile away. Follow Dinky is what I say as well as get a health prof on side who would get the funding via the NHS. HTH.

I think that ENC is going to be the right way to go for us. If we carry on waiting for the nhs machine to cotton onto what's happening for ds it will take a lifetime.

But if you get the GP to apply for you it will save about £3000, some say it's £2500 but I'm sure ours was £3500.

Not only that it will carry more weight as it's an NHS referral.

NHS cases are getting seen quicker than private, I think it was over 6 month waiting list. From getting the referral to being seen on the NHS took about 2 month.

Print some literature off the PDA contact group to take to the GP to clarify it.

Plus shy bairns get nowt and at the end of the day the money's better in your pocket.

I just can't see any chance of us getting the funding from the public sector. Like a lot of children with PDA, the probs are manifested 90% at home and most people have no idea that he has any issues (or maybe they are just being polite???) How can we make a case that he needs referral?

pop, I could have written this thread myself. We have been through the same with my DS who is 5.

pop - i'll pm you.

I've been wondering whether to pursue a DX for did 14. She has an ASD DX and loads of comorbid difficulties. Camhs will not diagnose in our area and I have thought of going private. I went to the PDA contact group meeting today and it confirmed my suspicions that I should pursue diagnosis but need to decide whether to push for NHS referral or whether to pay private as have other battles with education and social services ATM.

goneinsane, where was the PDA contact meeting?
We went to a PDA workshop a couple of weeks ago and that also confirmed to us that it really definitely, definitely is PDA and we really do need a diagnosis.

It was in Sheffield. Margo Duncan who runs the PDA contact group holds one every month. Today Dr Hilary Dyer attended as she's now researching into PDA and a member of the production team from the unbdateables as they are researching PDA!

I knew there used to be a meeting but hadn't seen any dates coming up. When and where is the next one? I shall put it in my diary, sheffield is only an hour away from us.
Just checked Dr Dyer's website out too.

If you email/ring Margo she'll keep you up to date. She, s a lovely woman. Her details are herewww.pdacontact.org.uk/frames/index.html
This Facebook group might be of interest too as it's connected to Dr Dyer's research
m.facebook.com/?_rdr#!/groups/454208101301497?ref=bookmark&__user=1296392681
She's also qualified to diagnose PDA.
The next meeting is the 15th March and they are always at springfield school in the city centre.

www.pdacontact.org.uk/frames/index.html

goneinsane- how do you get to join the FB group? I am on the PDAcontact site and interested in raising awareness of PDA.

Anyone can join the Facebook group. Its run by 2 parents in Staffs who are working with Dr dyer to improve services in staffs but they are welcoming to anyone.

Dr Dyer came to meet Margo and I think is intending on keeping the link with Sheffield.

Well,I think I've made a request to join so will wait and see.
Did consider contacting Dr Dyer a while ago but luckily didn't have to go to tribunal in the end.

I just looked on Dr Dyers website and realised she was originally meant to be running the PDA workshop we attended but in the end someone else presented. I would have loved to have seen her.
On her website it says "Where Clients require confirmation or diagnosis of an Autistic Spectrum Disorder, the GARS and GADS tests are undertaken, together with direct observation and assessment of the child according to the DSM-IV diagnostic criteria. Any diagnosis given would be subject to confirmation also by an Independent Child and Adolescent Psychiatrist, and Specialist Speech and Language Therapist." so if she were to diagnose PDA you would still need it confirmed??

Sounds like it. We managed to get dx through Camhs/EP as both had a bit of knowledge of PDA luckily. I think Dr Dyer is very knowledgeable about it so would be a useful witness for tribunal. I am considering a discrimination claim at present so may still need some expert support if we decide to go ahead with it. Don't have a lot of money though so it's difficult to know what to do for the best really.