Worried about PDA - or is she just 3?

[Higsty]

We have a daughter who turned 3 earlier this year. Currently waiting for an appointment with a developmental paediatrician as she is strongly hyperlexic, spoke late (though is now very fluent), has always slept poorly and has some unusual traits such as often answering to character names rather than her own.

Over the past few weeks we have seen a huge shift into defiance (this wasn’t particularly typical of her before and we didn’t really get meltdowns - she always had a fairly sunny outlook and was always very communicative, even when not speaking yet). Now the simplest things such as putting socks on or getting into the car are very very difficult and can cause a complete emotional outburst with screaming, kicking, flailing etc. Same goes for eating, getting out of the bath, and so on.

I have understood and fully accepted for a while that she is likely autistic, for the reasons above - she fluently reads chapter books (though largely understands what she’s reading and will tell me about a story that I haven’t read), doesn’t have a lot of eye contact etc etc, but I’m not sure what to make of this latest development. It could be sensory, it could be anxiety (she recently learned to use the potty and I think it’s sparked a lot of this 😞), it could be PDA, it could just be typical 3 year old behaviour.

She’s our only child so I don’t have a lot of reference points. Friends with children say meltdowns and ‘No’ phases are very standard, but I wonder if they’re as comprehensive as ours?

I find myself worrying about how to introduce what we’re doing that day, or beginning the process of getting her dressed, because the slightest hint of expectation will make her resist completely. Any suggestion of it being a good idea to use the potty before we go somewhere is also completely out of the question.

I’m exhausted already, and it’s only been a few weeks. I’m feeling really low at the prospect of this just getting more and more difficult over her life. Does this sound like PDA or just a developmental phase? Either way, any thoughts on how I can best help her (and us) would be really appreciated.

Just to add - we have a few ‘oh by the way’s, I know Janet Lansbury always picks up on these in the letters she gets!:

1. Daughter’s gran passed away in February. Obviously there’s sadness for DD but also a shift in her dad’s demeanour (it was his mum) and he has had to be away a lot sorting her house.

1. We recently had a big trip away which was great but a lot of new things for her to process, plus jetlag.

1. I have recent started an evening activity once a week (my first since she was born!) - so her dad is in charge of bedtime then for the first time.

Well it could be but I would think its particularly difficult to diagnose PDA in a 3 year old, especially one who is autistic and has experienced quite a bit of change recently. I think you will just have to wait and see.

There would be no harm in you reading up on and applying PDA parenting techniques now though. And, if things don't improve within a few months, start pulling together an EHCP for her.

ive got a pda child and at 2.5 yrs we really knew he had a few issues.

my pda child can totally look at you in the eye - he looks totally nt. (never avoids eye contact he always wants to be looking in the eye)
meltdowns - how long we talking? As they would defo last at least one hr even at 2 yrs old didn’t matter where it was. If there was something he couldn’t have (traumatised at Chessington world of adventures as I hadn’t got him a “breakfast bar with a face on” quakers oats one 🤪
nursery he hated - hated the rules to sit on the carpet absoutely hated going would have to lift him in 😬 prefer to stay with me. Wasn’t a great sharer especially toy cars 😬

getting dressed - put 2 outfits on the sofa - let your child pick the clothes
same with trainers or shoes
bath - have you got bath toys even old pop bottles with holes in make it fun or old butter boxes to play shops in the bath 🤪
do a social story - pictures on what’s happening today.
no surprises - let them know what’s happening today as popping to the shops can make them nervous ….
dont flush the toilet too quickly - sensory kids hate noise …. Maybe you flush it when she’s out of the room whilst she gets used to it

When my DD was 2.5 I started to read about PDA and try those strategies, because we knew for sure that we knew how to deliver mainstream autism strategies effectively for our older son, but that they were not meeting my DD's intense needs.

Sorry to say this, but if you're already researching and wondering about PDA, you might be in the right territory.

But also - I'm not sorry to say it, because I personally feel that, recognising PDA at a young age and arming ourselves with knowledge and understanding about the nature of this disability, that my DD is going to have the best chance possible.

The book I started with was Understanding PDA in Children by Ruth Fidler and Phil Christie. Also the PDA Society website is absolutely amazing and stuffed full of articles and webinars.

My DD had a really rough patch from 2.5 to 3.5 and the daily triggers were: waking up, using potty, dressing (simply awful), sitting at table, leaving the house (awful).

She could also mask like I'd never believe was possible if I hadn't witnessed it myself. I believe this pressure to hide her real, painful, confused and frightened self from the public eye is one of the most damaging aspects of her condition, because it takes so much of her energy and control and then later all the turbulence and pain comes out.

Strategies that helped us at that age :
Making the clothes "talk" to her
Making the potty sing with delight when she sat on it, or making it grumble at her that she was too heavy ... she has a great sense of humour and laughing helps so much
Offer limited choices eg "we're going to the park now, do you want to wear the red shoes or the blue?"
Take photographs of every place / person you're going to go/see, and have them ready to show her. "This morning we're going to the playground near nursery, (show photo so she is sure she knows exactly which playground and her anxiety doesn't latch onto any uncertainty), last time you went on the slide there quite a bit, I wonder if this morning you'll go on the slide again or maybe the swing ..."
Give her a place to hide when out and about (baby jogger city mini 4 wheel has a massive hood which gives privacy, 4 wheel version sturdier than 3 wheels if she kicks or meltdowns whilst in buggy).
Give her regular periods of zero demands and make it a regular weekly event on the calendar. During this time you give her zero demands. "Today you're the Captain and you decide what we do and don't do. So I'm going to get dressed now, you can too or you can stay in your pyjamas if you prefer."

Ps, all 3 things you mention would be massive triggers for my DD resulting in much more unsettled weather for a few weeks ... she is terrified of death and talks obsessively about it, wanting to understand it ... she cannot tolerate holidays or trips, and her anxiety becomes so out of control and aggressive that we have terminated several trips ... and she is very unsettled by my DH being out of the house one eve a week and her bedtime routine changing. You could try taking photos of where you will be that night, draw her a sort of joint visual schedule with clock faces / time showing what her routine is, and what you'll be doing yourself in the parallel moment. Make it quite detailed and add in a picture of her falling asleep, then you arriving home later and giving her a kiss whilst she's asleep, then waking up next day and normal routine continues. This way you're book ending the period of uncertainty and fear when the routine changes, and she can visualise where you are and what you're doing rather than just a sort of mental black hole that you've gone.