Anyone with experience of Pathalogical Demand Avoidance Syndrome?

[orangemoon]

My 4yo ds displays asd traits but CAMHS have been reluctant to diognose him because he only displays this behaviour outside of school, so whilst browsing the nas website i came across PDA syndrome and it fits my son perfectly and makes everything he does make sense.
So was wondering if anyone knows anything about it?

Hiya, we are in exactly the same situation with my 9 yr old daughter. Been going round CAMHS etc all these years and finally stumbled across PDA which fits her exactly. Her Psychiatrist is currently looking into it but thinks it's unlikely they will find anyone with the right expertise to diagnose it.

In the meantime I am waiting for a reply from the Elizabeth Newson centre which seems to be the centre of expertise for PDA. Have a look at this link, it's the best info I have found so far -

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

I came across something to do with this in work on Monday. I think it was perhaps a paper in a journal.

I'm not back in the office till next Mon, but I'll see if I can find it for you.

I think the leading place for a dx in this country is Nottingham. I have met and worked with two children with PDA who were dx'd there both living within Derbyshire where there is a higher dx rate for PDA because of the proximity of Nottingham. Sorry don't know the details of who the specialist paed is but know both children were dx'd on the NHS. I thought for a while that DS had PDA but he is 'demand avoidant' along with his AS!

Thanks everyone. Julia, i worry about my camhs not willing to diognose it as everything i read on the net seems to suggest most wont as it's a relatively unheard of outide of the nottingham area.
Will have to wait until ds's psyciatrist comes off of annual leave next month before i can ask her about it, but from what i have read, if my camhs wont diognose it i can get funding from the lea for ds to go to the center in nottingham.

I think the ONLY place you'll get a dx of PDA is Nottingham. There is a lot of controversy as to whther it is a valid dx and whether an ASD dx would be more approprate (see NAS website for experts disputing this dx).