pathological demand avoidance - anyone else dealing with this?

[mulranno]

anyone want to experiences?

Just had a dx of asd with pda traits for ds3. Haven't done much reading yet. DH convinced ds3 is getting over it (good patch at the moment). I'm learning everyday.

DX of ASD with complex presentation here but it's pda (demand avoidance in statement of seen).
Not coping too well with it ATM tbh.

Yep. DS1's diagnosis is ASD/ADHD but in many ways, he presents as having PDA (not in terms of sociability and early history, though).

It's flipping exhausting.

Same here, asd/ PDA , very difficult. PDA methods are helpful , traditional discipline we fine disastrous !
How are you getting on?

here too, alongside DS/ASD/PDA/SLD and medical problems, so far nothing much is working.

We're in the same PDA boat here, waiting (and waiting) for a diagnosis but very much convinced and we have read A LOT about it. Relatively few typical asd characteristics but PDA criteria feels like they have been written after direct observation of ds- it describes him perfectly.
PDA techniques work well most of the time and traditional techniques are a complete and utter disaster. The severity waxes and wanes and we cannot seem to discover the causes of either the bad times or the good so just have to ride out the bad and enjoy the good while we can.

I was told recently to look at pda by a psychologist friend who knows my daughter and the struggles we have. She is 11 and has always had extreme behaviour at home but is known as a gentle soul/v quiet at school - she has splds but at home she is obsessive and bullies everyone - our family life is disfunctional We cant go on holiday out to eat or in the car together as she just kicks off. We are exhausted and at the end of our tether.

I know now what to do with ds but it's taken a long time to get here. We are very, very lucky that his teacher in his SS 'gets' him 100% and can predict and deal with his anxiety.

Whilst I wait for an NHS referall -- can anyone send me some useful links - and also what is the main therapeutic/managment approach?

National autistic society info on PDA
www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

PDA contact website
www.pdacontact.org.uk/frames/index.html

Excellent book
www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Children/dp/1849050740/ref=cm_cr_pr_product_top

Also look at norsaca website in general but specifically their publications
www.norsaca.org.uk/about-autism/elizabeth-newson-centre-publications-list/
Hope that helps

Also have a look on facebook ...

www.facebook.com/groups/7165353156/?fref=ts

I am in the position of needing to support so I was going to set a local group up, turns out there is a facebook page in Staffordshire already (not face to face yet but it will happen :-))

www.facebook.com/groups/454208101301497/

My serious advice to all of us is that the only way to get help it to do it ourselves. Join the facebook page and see if there are people in your area who would like to join together. Setting up a face to face meeting is relatively easy using a church hall or civic centre or whatever and takes an half hour of your time. Anyone with a kid who has pda needs help so we need to generate our own help :-)

Davert, you are right it's really important to share our experiences and knowledge. My facebook acct is playing up ATM but once its sorted I will join the Facebook group.
Ds' teacher has been using PDA techniques for the last week and on fri said he had had his 'best week ever'. Head teacher is going to read pda book over hols and they will make plan of strategies when they get back. Dh and I can hardly believe that school have finally cottoned on, it's truly brilliant!

I have an 11 year old boy who was diagnosed with PDA in Sept 2015 when he was 10 years.

He wants to, but is unable to go out or attend school.

I am worried sick as it seems like a waste of a young life.

He stays home all day and watches t.v or plays his I pad or console games.

It seems like such a sad and lonely existence.

I have no idea how to move forward as I have tried everything.

Does anyone have any advice or tips for me please? I am desperate!