pda

sm213

I think my daughter has pda.
http://www.autismireland.ie/about-autism/365/

She exhibits a lot of these symptoms. I have suspected for a while that she is o. The spectrum but never knew about pda. I wrote it off as paranoia as two brothers and a cousin are on the spectrum.
My brothers are moderate one is expected to possibly become mainstream the other will not.
My cousin has aspergers.
I felt I was just comparing her to them and told myself I'm being silly as she is quite social in some ways.
Basically where do I go from here?

January

You need an Assessment of Needs, how old is your daughter?

sm213

January wrote: »

You need an Assessment of Needs, how old is your daughter?

She's 4 next month. A bit late I know but as her language and social skills, or rather appearance of them has always led me to think she's just angry. But at what I'll never know. Better to get assessment than not, I'm thinking, whatever the outcome may be.

January

She can still have the aon so. Off to GP for referral ASAP

sm213

January wrote: »

She can still have the aon so. Off to GP for referral ASAP

Thanks for the input :-) gp on monday so.

Roselm

sm213 wrote: »

Thanks for the input :-) gp on monday so.

Hi,
You can refer yourself! No need to pay for GP visit.
Contact your local AoN officer for an application form http://www.hse.ie/eng/services/list/4/disability/Disability_Assessment/Assessment_Officers.html

January

As an aside, I've just read your link and it's like reading about my daughter...

Shrap

January wrote: »

As an aside, I've just read your link and it's like reading about my daughter...

Same. Sounds just like my son. Might also explain why he's kept being undiagnosed as on the spectrum till his emotional and behavioural issues brought him to CAMHS (who think he does have ASD), aged 14. Also, explains why parents of such children often feel wrongly accused of bad parenting - I have been and yet my older son is confident, socially aware and working in school/college.

Thanks OP for the link.

Shrap

Update on my last post here - thanks to the chance reading of the OP's link, I have pursued this and CAMHS are now investigating the possibility of a PDA diagnosis for my son. This is an incredibly complex and difficult Autism to diagnose (and manage), and there are few people who can and do diagnose it here still. Last night I spoke to a wonderful parent who got the first PDA dx in Ireland and has educated many here thanks to her hard work and dedication. At one stage, she even arranged a seminar from the UK's leading expert for 40 approx HSE clinicians in the Munster area. She also actually gave the information to Irish Autism Action that is in the OP's link! I was warned that I will need to educate all before me, as we navigate through the system (NEPS, for example) and literally hand them the printed booklets/books to be going on with before they attempt any assessments.

For anyone looking for further info on PDA, here's the educational resources available:
http://www.thepdaresource.com/pages/pdfs_books.html

http://www.pdasociety.org.uk/

and the bible:

http://www.amazon.co.uk/dp/1849050740/ref=pe_385721_37986871_TE_item (author Phil Christie being the man who has been here advising clinicians and teachers)

and a large facebook support group (closed group, so private) which you have to message in order to join: Pathological Demand Avoidance (PDA) Group

Shrap

Another update:

He got a diagnosis of ASD, with PDA characteristics. Only been looking for the ASD diagnosis for 10 years!! CAMHS are amazing.

mohawk

Shrap wrote: »

Another update:

He got a diagnosis of ASD, with PDA characteristics. Only been looking for the ASD diagnosis for 10 years!! CAMHS are amazing.

10 years!!! What a joke.
At least know you know what's going on with your son and that it's not all in your head.