advice around PDA

[nickEcave]

This is my first time posting here and I'm looking from advice from people who think or know their children have PDA. My DD is 5 and has always been excessively strong willed with some sensory issues (getting her into socks or shoes and washing hands and face or applying suncream have always been triggers for huge tantrums). I read about PDA for the first time a few weeks ago and it was like a lightbulb moment. However I am now very unsure about what to do next. I've done the PDA society checklist and she scores 38, which is not high enough to say that she definitely has it. Her behaviour is very compliant at school but much worse at home and getting more difficult to manage. She is starting to exhibit more controlling behaviours around things like refusing to change her underwear or wash and not wanting to leave the house even for parties or treats (she has always been very resistant to going to school in the mornings). My DH is against getting the SENCO involved or pursuing any kind of diagnosis at this stage but I have read that children with PDA can be OK in the first couple of years at school but then suddenly deteriorate over night. Do you think its worth speaking to the school now about our concerns?

Hi nick I am just revisiting PDA at the moment with regard to my Dd3, she is 13 and has a dx of Asd, she is academically able but cant cope with school and is currently home educated.

I have ummed and aahhed about PDA before but lately it has come to the surface again. Dd3 is very settled at the moment although she is anxious about lots of things, her demand avoidance is very apparent and she is resistant to pretty much every demand placed on her.

About a yr I bought the book Understanding Patholgical Demand Avoidance Syndrome in Children which I have now dug out to have another read. I need new stratgies to work with as mine are not working at the moment and it is hard going.

I actually think school did make Dd3 more compliant (she was very demand avoidant as a pre schooler) but the cost was really high anxiety and damaged mental health!

If you think your Dd has PDA then its worth following it up, mothers instinct is fairly accurate and you have nothing to lose by educating yourself and asking for an assessment! Personally I dont think I would go to the senco though, s/he is unlikely to know much about PDA and could try to blame your parenting!! (That is common btw).

Personally I would keep a diary and also make notes of why you think your Dd may have PDA and then go to your GP and ask for a referal to a developmental paediatrician!

Good luck

Thanks so much for your reply. I intend to get that book and have a bit of read over xmas. I really don't know if my daughter has PDA or is somewhere on the edge of the autistic spectrum with PDA traits. Some of the indicators of PDA are missing - for example she had no early language delay and she doesn't role play, although she will tell lies and then refuse to budge even when shown evidence. From what I have read on the PDA Society website and in forums I think we would really struggle to get a diagnosis. Her teachers think her behaviour is entirely normal so the school wouldn't be able to provide any evidence and all of her most extreme behaviour occurs in the home. I will start to keep a diary though. Things have improved slightly since we started using PDA techniques and acknowledging that her behaviour is anxiety-driven - we had tried every reward/consequence system ever invented before that to no avail! Can I ask if you needed to start home educating during primary school or whether things became worse once your daughter started secondary school? I'm really not sure that home educating is something I'd be able to cope with.

I dont know any child or person who meets every criteria for any condition so dont worry about her missing a few signs.

The key thing is that you have found strategies that are helping, I would continue to use them and keep a log of what you are using and how it helps.

We stopped sending Dd3 to school in June which was the 3 term of yr 7. We did move her to a different primary school in yr 3 due to her having massive meltdowns on a daily basis and being very unhappy.

Her first school didnt recognise her needs at all and just treated her as a quiet child who lacked confidence which is so totally not her at all!

Her second school were better until she fell apart in yr 6 and then they had no clue how to help her so instead of trying known strategies they just didnt do anything. That approach was also used by the secondary school!

I was worried about how we would cope with home ed but now we are doing it we love it. Our days are calm despite being busy, we dip in and out of home ed groups and meet ups as and when we choose to, we do lots of real life learning and lots of practical and physical stuff.

We are not doing much traditional academic stuff but I can still say for certain that Dd3 is learning.

Anyway, whatever you decide has to be right for you and your Dd.

Good luck