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PDA - who diagnosed your child?

12 replies

LovelyLovelyWine · 09/05/2012 12:49

DS has AS and severe behavioural issues.

We have researched PDA and think it fits very well with DS. I have been in touch with the Elizabeth Newson Centre and am going to look at their recommended publications, provide the school with their education guidelines, and start the (what will probably be lengthy and hideous) battle with the L.A to fund an assessment there.

Did anyone get a PDA assessment / diagnosis elsewhere? I am desperate to have him assessed, as although his school are supportive and pen to trying out new strategies, they ad we are not sure it is the right provision for him long term and I need to be sure he will get the right support if he goes elsewhere.

tia

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HotheadPaisan · 09/05/2012 14:33

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LovelyLovelyWine · 09/05/2012 19:46

Thanks Hothead.

Is Daphne Keen in London?

He is 7 yrs old. His behaviour is pretty extreme. At the moment he attends an ASC unit within a mainstream school. They are well meaning but seriously struggle with his behaviour, as do we. The SENCo has researched PDA and is supportive, but the research I have read so far seems to suggest that children with PDA learn best when they are working one-to-one with someone they have formed a strong bond with, which I am not sure is totally possible in the setting he is currently in.

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HotheadPaisan · 09/05/2012 23:09

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amistillsexy · 09/05/2012 23:25

We reached the point you are at. Our Clinical Psych suggested PDA, but was unable to persuade the AHA to fund assessment at Elizabeth Newson Centre.

We provided school with the overview of PDA (fits DS1 like a glove), and the educational guidelines.

School have taken them on board to the letter. In y opinion, the provision is of far more importance than the diagnosis, as if the provision suits the child's needs, it makes no odds what the dx is, but a dx without adequate, needs-led provision is useless.

Another thing to bear in mind is that, even if you pay for an assessment, and they say he fits the PDA profile, this is still not classedas a diagnosis. SInce PDA is not recognised on dsm5, and is not going to be recognised in dsm6, PDA is not deemed to exist 'officially', and so cannot be 'diagnosed'.

There is alot of research going on at the moment, though, and this can be useful in understanding your son. We took part in a research project and the student (doing her doctorate, so knew her stuff) came and gave a really thorough set of assessments, which she followed up with a very in-depth report. The report was useful to read, and I would have jumped on it a year ago, but becaues DS1's behaviour has calmed down so much since going to this (wonderful, amazing) school, I simply filed it, as it doesn't add anything we need at the moment. I can't believe we've reached that point! Grin.

By the way, Ds1 is doing so well because he has a full time statement and a completely individualised timetable. He is physically in the mainstream classroom, but has his own timetable (very flexible and all negotiated), and fantabulous support, which the school has trawled the entire area to find.

At his annual review, I asked if it was likely they would reduce his support hours and the SENCO almost laughed at me-she said no way could they have achieved the success they have done without full time 1-1. They even wrote into his statement a list of 'ideal characteristics' for anyone who is employed as his 1-1!

HotheadPaisan · 09/05/2012 23:32

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devientenigma · 09/05/2012 23:38

Hi all, sorry to hijack but can I ask what the dsm are? and I agree totally RE the right provision, any tips on how to get it without a dx?
thanks x

amistillsexy · 09/05/2012 23:48

To be honest, the only thing I have is what I pulled off the Elizabeth Newson website. The school has done the rest. I don't have anything in writing as I didn't have to fight for it, if you see what I mean (unlike at his 2 previous schools, but we hadn't heard of PDA then!).

I am very happy for you to PM me if you want to though.Grin

There is a new book out that I bought at the NAS PDA conference last year. I didn't think it said anything I hadn't read already on ELizabeth Newson Website though.

Are you on the PDA forum? here. They are very good. I went to 'guidelines' on that forum website and printed off everything I could. I also printed off the diagnostic criteria and highlighted everything that related to DS1. I used a traffic light system- red for yes, absolutely ant utterly true, orange for somewhat true, green for a bit true, and blank if not applicable. It was a very colourful document when I had finished!

It might be worth you doing the same for your DS, and presenting that at the meeting, then follow it up with, 'SO, given that this fits DS and we have nothing better to help us, let's look at the guidance...' If they object, you can simply go back to your traffic lights and say 'which statement/s do you think don't fit DS?' 'How do you propose supporting him in this issue?'

Let them give YOU the answers, if they can, and if they can't, go back to the PDA guides!

amistillsexy · 09/05/2012 23:52

dsm are the Diagnostic and Statistical Manual of Mental Disorders.

Sorry, we are currently on iv, and version v (or 5, as they are now using) is due soon.

Although it is American, it is what is used to describe and diagnose mental disorders in Britain as well (as far as I know it is Nationwide, but I may be wrong).

here

devientenigma · 09/05/2012 23:54

I am on the PDA forum and hopefully awaiting a referral to the Elizabeth Newson centre if the GP can set it up. My DS doesn't have a diagnosis of autism but is signed off school with school phobia, social phobia and autistic traits. The GP and cardiologist feel he is autistic and I have since had him assessed by someone able to give an opinion but not a dx. He meets the full criteria for both autism and PDA. My DS has down syndrome. He is 11 year old, been out of school for over 2 year and was lucky to be part time before. He has always been special school due to being severe learning disability but extremely clever when it comes to avoiding lol. He is aggressive, controlling, demanding and very hard work. Anything that you think will help will be great.

devientenigma · 10/05/2012 00:01

will do, thanks x

HotheadPaisan · 10/05/2012 22:51

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HotheadPaisan · 10/05/2012 22:52

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