Impact on parental mental health of PDA

https://www.amandadiekman.com/blog/the-path-forward

this put into words a lot of what I’ve been feeling, and why all the usual approaches don’t work

In my search for info on pda and just feeling totally alone on this journey, I came across this blog, it has a bunch of helpful articles on PDA and low demand parenting. I’ve just read about ten back to back
https://www.amandadiekman.com/blog/Meet-Autism-Criteria

PDA cannot be "diagnosed" by any NHS centre as it's not an official recognised condition within the DSM 5 or ICD 11. It's also always part of an autism profile in the UK

I think at least one if not to of my children have PDA but it’s not diagnosed on my country on the NHS.

I’m really sorry ❤️‍🩹 we are travelling tomorrow too and the kids have been little dicks too. I’ve found myself in a state of learned helplessness due to DH and the youngest’s PDA. It feels like a pinball machine tbh. I’m just standing here randomly pressing buttons and hoping for the best, with no idea when the kids will dump a big load of stress, or even vengeance. Sending a hug and wine through the Internets. It’s not you.

Im sorry, it sounds like a really bad day. Something must be going on in the background that’s tipped her over today. Half term tiredness, the prospect of half term, illness pending, something at school…

She must feel safe at home to be able to let it out. So draining for everyone though..

I was surprised by how successful it was to offer ten pence in her gohenry card for each task each day, rather than outright ask. eg clear plates off her desk i to the kitchen, dirty clothes to utility.

It was instant reward, and quite funny to see her think up tasks for herself. She loved seeing the money appear almost instantly. And because I usually texted it rather than spoke or (horror of horrors) looked in her direction, she decided for herself whether to bother.

It really helps me to understand my DD as about 5/6 years emotionally behind…..but making progress each year. I found totally changing my expectations and making environmental and relational adaptations (and protecting and improving my own emotional capacity, adaptability, resilience etc) took the tension out and gave her the space to learn to respond appropriately rather than react impulsively.

I would also say to @JekyllHydethat all your old friends will be going through some challenges with their own DCs. I would be trusting so you get support, release and energy from friendships. Some of the hyper achieving girls from my DD group were struggling behind the scenes with ED, depression, social issues. Life is very challenging for teenagers and their parents - you are not alone.

Honestly this thread is really uplifting. The online resources are so grim. So nice to see kids coming out the other side of the school / puberty maelstrom with a bit more capacity.

Sympathies - we do still have some of this but nothing like as bad as it was. That feeling of walking on eggshells all the time. I might drink my drink wrong, or use a slightly wrong word, or try to tidy something that just had to be left in that particular spot, and cause a strop or a meltdown. It's utterly exhausting, that 'on edge' feeling the whole time. But for us it really has got so much better. And we are all so much better at communicating. DD is able to say "mum, I need you to not do X in front of me" and I try and remember and make adjustments. Or we treat it as problem solving where we each say what we want and talk it through to find a joint solution. It's so much better if they can talk to you, but I know that many kids just can't yet.

Or even the bar could be that things didn’t escalate to a full melt down which in my house we were reverberating from for many painful days after even when it was silent.

Better emotional regulation is your only goal for her IMHO. Track that privately. How many outburts today? What weee they on a scale of one to ten. What was happening before, during and after the incident? Etc

Once it starts to improve and becomes her normal foundational emotional state she will be able to achieve anything at her own pace. Education can come later. It helped me to see the outbursts as weather. This storm will pass over - I need to protect myself from it - visually go indoors and watch the storm through a window so you don’t get bounced around. Then go back out afterwards when it’s calm to assess the damage - but it was futile and counterproductive to fight, lock horns and try to control the storm.

This situation has a huge impact on the whole family system - marriage, siblings, family time. Even extended family - my sisters told me not to bring her along to their homes even though she had cousins there the same age that she loved because DD couldn’t cope with me talking to my sisters and would goad and harass me. My other children suffered when we were trying to constantly fire fight. One just sloped off another got wound up with her - her younger sister was another target of her bullying.

The emotional dysfunction flew around the family like a pin ball machine - and I will admit that she was highly sensitive to and triggered by my own emotions which I thought were undetectable but my clenched jaw said it all. I had PND after her birth also lost my mother and had a really bad peri-menopause, 4 kids, high powered job and a shit marriage - also (still) untreated ADHD. I also had unrealistic high expectations of my DC as both my DH and myself were high achievers. I had brilliant therapy for my childhood trauma and the shit marriage and as I was emotionally supported and growing in emotional capacity the relationship with my DD improved as well.

Things are loads better now - she is a delightful 25 year old who eventually went to uni and has a great job. She lives a very organised life and this environment supports her. She is looking for an ASD diagnosis and I can reflect that my ADHD family and career set up was chaos for her. We have a great relationship now we understand each other - our limitations and our gifts. On holiday recently they all played a game to use 2 words to describe each other. She described me as comical and compassionate. I’ll take that as I have been consumed with how I was a shit parent.

Think my message is shore up and grow your own emotional development, understanding and capacity of yourself and this will implicitly filter back to her.

I have ended up having to take leave of my job as my mental health has been so badly affected by my DDs behaviour. 3 tweens all with autism, adhd and one also has PDA. It’s hard, sending sympathy

Oh absolutely be proud and happy that she made 3 days - that's brilliant! The drive from schools for perfect attendance does kids and families like ours no favours at all. DDs attendance at secondary ranged from 70% to 30%, but she came out of there with good exam results, and that's what counts. Just relaxing about it all really makes everything so much better, and if you can persuade school to help rather than hinder, then all the better. But definitely celebrate those positives.

We think DH has autism and I have ADHD (at least, the psychologist thinks I do). We have been seeing her now on and off for nearly 10 years. If you can find someone good like that it could really help. Ours is private but not too expensive. We aim to see her every 4 weeks or so, when needed, and pay about £120 an hour.

I have a son who hasn’t attended school for almost two years due to OCD. His last therapist suspected possible ASD (like his brother), but has now left and we’re waiting for a new one. I know it’s not the same as PDA, but it’s similar from the point of view of that awful feeling of always trying to say the right thing, in the right tone of voice, to avoid a reaction that could just tip everything over the edge. I’m a complete wreck and find that I have very little patience and am constantly on high alert. My brain is scrambled. I always say I’m like Hyacinth Bucket’s next door neighbour, in the sense that she was always terrified of sitting in the wrong place or lifting the wrong cup or spilling her tea. Except it isn’t funny.

So, solidarity from me

Oh, OP this sounds very familiar. Have a 🫂. DD has autism (PDA profile), ADHD, anxiety, depression and was a school refuser. This caused conflict between me and DH, who likely has undiagnosed autism himself. He really couldn't cope with parenting DD so I was the default parent and struggled so much.

What really helped us was lowering the bar, taking the small wins, and simply being realistic about what DD could manage. I started off trying to get her up at 7.30 am, and would keep trying until about 1pm, at which point I gave up. We started seeing a psychologist who helped us understand that this was actually counterproductive. This helped in several massive ways. First, we had professional guidance as to how best to help DD. I could use this to explain to DH why a more relaxed approach actually worked better and strictness was just making things worse.

We were also able to work out (with the psychologist) what was keeping her off school and trying to sort that. Making the decision (with school support) that DC would concentrate on the important subjects and just ignore others completely took a lot of pressure off. For example, DC was missing entire days because of anxiety about 1 lesson, so school agreed she did not have to do that subject,(actually she dropped 3 subjects) which meant it was far more likely she went in. This meant an official part time timetable, where sometimes she was at home and sometimes had free periods in school.

Also, if some days she was just really down and said she was unlikely to make it in today, I'd just leave it and not worry. The reduced pressure really helped and meant everything became much more calm. DD started making an effort to go in on the days she had important subjects. The big thing was support from school, based on the recommendations from the psychologist. For DD, this was the part time timetable, no homework pressure (wasn't chased if she didn't do it), and outside of school doing things she found enjoyable and relaxing, but if she didn't want to go one week, that was fine too.

It just gradually got a lot better and we now live in a calm household where everyone gets on again. DD got good exam results in the subjects she did and now goes to college where her attendance can still be sporadic but she's doing well on a course she enjoys.

I'm sorry this was so long, but I wanted to share our story as you sound so much like we were years ago. I hope you can find a way forward that works for your family.

@JekyllHyde
My advice would be lower the bar as low as it can go, lower than it needs to be and be ok with it being that low.
Once the bar is lowered then anything above the bar is a win, and with the wins, however small, comes positivity, for the whole family.