Could this be PDA?

[alierstone]

I live in a country where PDA is not recognized and I’m having a hard time working out if my 5 year old fits the profile.

She has been having incredible meltdowns for the past few years, when something doesn’t go her way. Today, for example, when told to put on her coat, and later when she stopped walking in the street and demanded I carry her as she was tired. These meltdowns can be daily and last hours. They are exhausting.

Getting her dressed, brushing her, teeth, getting her to drink water… All these things take a long time and meet huge defiance.

She is highly sensitive to certain materials and putting on socks or tights is a nightmare.

She has friends at school, and enjoys seeing them, but is much shyer than anyone in her class. She gets very nervous about mundane social situations even if she insists on taking part in presentations at school and the like.

She sleeps very poorly and always did.

She frequently wets herself and asks to wear a nappy.

I’ll caveat the above by saying we moved country, apartment, school, in the past two years and she has a one year old brother. But, honestly it feels like there’s much more going on than adapting to these changes.

There is no know history of PDA/ autism in our families, but we are both pretty anxious people. Not that that has stopped us both having good careers to date.

I would love someone else’s thoughts and if anyone could recommend an online diagnosis provider? There’s not much available where we are.

PS I’m also terrified of the implications of a PDA diagnosis and any reassuring words are welcome 😊

One way to tell, use pda strategies and see if they make any difference.

www.pdasociety.org.uk/life-with-pda-menu/family-life-intro/helpful-approaches-children/

Here is one website which is useful, there’s loads of strategies you can use if you google.

This book on Amazon.

www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Children/dp/1849050740/ref=asc_df_1849050740_nodl/?hvlocphy=1006752&linkCode=df0&hvptwo&psc=1&psc=1&hvnetw=g&hvadid=310867999190&hvpone&hvlocint&th=1&hvpos&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforu03-21&hvtargid=pla-516358700634&hvrand=11374452117826168363

Thanks for replying!

I feel like these approaches can only make life easier/ result in fewer meltdowns. But that wouldn't mean she had Pda, just prefers getting her own way. I'm reluctant to go all in without a diagnosis.

It could take you a long time for diagnosis though. (If that’s what she has)

It’s worthwhile using strategies in the mean time as it will not only make your life easier but also her own.

When thinking about PDA, it's best to take yourself out of the 'she's getting her own way' mindset and into a 'I'm going to give some control to her to avoid her anxiety making life unbearable,' mindset. PDA is just that, it is pathological. We're not doing it on purpose. It's about control and the need for control stems from anxiety, often caused by autistic brains finding it hard to predict what might happen next. E.g. instead of saying put your coat on (a demand), I'd say 'ooh it looks cold out there, I might put my coat on. Shall I get yours?'
It's also about letting your child think they are your equal and any rules apply to everyone in the household. My DS does not recognise authority for the sake of hierarchy and he expects everything to be fair. So saying 'do as you're told' just riles him up. It's been hard adjusting because we parent in quite a different way now, very egalitarian, but of course we still have rules. They just apply to everyone in the household. I can see when the demands build up too much for him as he gets much more fractious and disregulated. I recognise pda in myself too, it explains a lot!

What makes you think it's PDA? For me it sounds more like possible autism, though at 5 it could also be that she's slower developing in certain areas.

You could try creating more predictability and routine. For example you could make a chart with pictures showing each stage of getting ready in the morning and let her tick them off as each one is completed.

PDA is a profile within autism, ots possible to he both. Totally agree about visual timetables.

Thanks for your responses.

We've tried maki g things more predictable, giving her more time and have been working with a professional, but it's just not working.

She lacks quite a few typical traits linked to autism and is very imaginative. We're going for an asd diagnosis this month though.

Last night was a tough one, so any help can't come too soon

My DS is really imaginative in that he can make up stories but he lacks the imagination to predict what might happen and to do.imaginative play. I read about it, these are different types of imagination apparently, so an autistic pda child can easily naked up whole worlds qnd stories but struggles with peer play. Fits my own childhood experiences too.

Thanks for sharing.

Whatever it is we're going to do our best to help her manage it.

I must say the more I read online the tougher it sounds.

I can't help but ask how you've dealt with pda yourself? I hope it's been managable for you.

I have two children with autism, both very imaginative. I delayed investigating autism with my eldest because he engaged in imaginative play. There's a lot of misinformation and lack of understanding about autism, including within the medical profession. You don't need to tick every box of autism to get an autism diagnosis.

PDA is not actually recognised by everyone as a diagnosis, some people view it as separate to autism, some as part of autism and some don't recognise it at all. In this country it's generally seen as part of autism. Many autistic children will have features of PDA (both mine do) but to get a PDA diagnosis I understand the behaviour needs to be really extreme. To give you an idea, my son refuses to do homework and tears up homework sheets, he won't read a book I give to him, I have to leave books lying around for him to find. But he doesn't meet the threshold for PDA.

By this country I mean the UK. I think it's different in other countries.

Yep we just have 'very demand avoidant' written on ehcp as its so hard to get a full.pda diagnosis.
Re: myself, it's tricky. I just always thought I was a stubborn strong willed person. I'm now starting to see that I don't deal well with demands. So for example, of i have a big meeting or something and should get an early night, I'll end up staying up as I don't want to comply with the demand to sleep (even though an early night was my own idea!) I like to do things my way on my own terms. I'm much happier now that I manage my own space at work. I have learned social routines but I always feel like I'm putting on an act. Like right, here comes so and so, let's get the 'hello how's things' script out. As a child, I tended to freeze rather than fight when overloaded with demands so everyone thought I was just a bit of a daydreamer. I have to make myself do things I want to do (like go out to.meet a friend) as the demand causes me anxiety but then I enjoy it when I'm there. As I said, tricky!