I suspect PDA in DD and it's breaking us all

[Leafysocks]

Don't really know why I'm writing this. Just in case anyone can relate I suppose, and tell me things will get better?

My DD is 10 and I suspect she has PDA. I have diagnosed this myself via Dr Google. I am not a doctor. I have requested referral for assessment for autism with a company who seem to specialise in PDA and autism in girls and masking but the waiting list is 18m-2y.

DD is fine at school. A delight. She gets on well and has friends and her teachers have no concerns. She has been observed in class and they see no issue.

At home is a different matter. Our lives are ruled by her and her moods. I spend my time trying to keep her younger sibling safe and trying to shield the baby from her behaviour.

She is violent, aggressive, swears, threatens, does not listen and does as she pleases. The only way I can get her to do things is by bargaining and ultimately making threats to remove devices as this is all that works. I know this isnt good parenting.

She has no respect for anyone's property, taunts her sibling by going into their room and taking their stuff, like a teddy and licking it if they haven't reacted to her previous taunting. Sibling is no angel and will react and it gets physical on both sides. sibling will annoy her and DD ultimately gets in trouble as her reaction is wildly over the top.

When she is struggling (which seems like most of the time) she will say she hates us, wants to murder us, wants to die. She has got knives out of the cutlery drawer and says she will harm herself. I'm genuinely sure she has no intention of doing so but she wants to show how extreme she is feeling.

She screams at some unbelievable volume level every day around the baby. Sibling is having a hearing assessment and I wouldn't be surprised if he has noise induced hearing loss from her shouting directly into his ears an number of times a few years ago.

She will not leave the room during a meltdown and the rest of the family end up evacuating to get away from her. Even then she blocks us and follows us.

She won't eat the same food as us so I end up making separate meals.

The worst thing is she will scream and shout 'stop hitting me' at my husband when he has not touched her but is trying to guide her into her room. I have witnessed this. He now cannot connect to the situation as he feels worried around her so has taken a step back in terms of managing day to day life. We have both spoken about feeling like we want to run away.

I'm considering putting a lock on younger siblings door to protect them and their stuff but don't know if that's a reasonable step to take.

We have moments where things are great and we enjoy her company but only when she is getting exactly what she wants and we are buying her something or she is getting fed junk food.

After a screaming violent meltdown she has some time and will sometimes then want a cuddle and say sorry but she can't actually remember exactly what happened. Then 5 mins later again she will be laughing and messing around with her sibling for a short while before they do something 'wrong' and it all gets chaotic again.

I'm feeling quite helpless. I am not the parent I want to be and I don't see a way forward. We are just existing in this.

Are you sure that autism is the right path? It seems a bit mad just to Dr Google and choose a pathway. Whilst she could be avoidant, wouldn’t it at least be best to start by seeing a paediatrician and if they recommend the pathway, then you can pay privately if you want to avoid the waiting list?
i will say though - what are you hoping to achieve? My dd got an autism diagnosis, she was already being supported at school so that continued, but aside from that you are on your own, there isn’t really any support and nothing changes. So all the problems you describe will still be there for you to solve, basically alone, but with a label for the issue.

This sounds exactly like my DD. She is on the waiting list for an Asd and Adhd assessment. My DD goes from 0 to 100 instantly. I feel like our family life revolves around her and we are constantly walking on egg shells all of the time. I will say that I have done alot of workshops for Asd and Adhd parents. This has massively helped us to understand why Dd is behaving the way that she is. Being able to understand her has definitely made things much easier for us as a family.

In your OP there are a lot of instances of you giving in or letting her have her own way. Do you always cave?

It sounds like she's neurodiverse and masking like mad at school so by the time she's home she's completely emotionally disregulated and unable to control her emotions.

I wouldn't say she's PDA because true PDA manifests itself in every situation. She couldn't hold PDA in at school.

What you've got is PDA traits caused by overwhelm.

The good news is that the PDA will decline as the overwhelm declines. The bad news is that it's the education system that is causing the overwhelm and that's a tricky situation because there's very little support for neurodiverse children stuck in mainstream schools.

I'd talk the school SENCO. Can extra support be put in place such as a quiet place to go to at break/lunchtime, if the normal noise us too much, reduced homework, etc. Is there any particular aspect of school that is more difficult than the rest?

Have you contacted the National Autistic Society? They run some useful online parent courses which unlike most parent courses understand ASD issues and don't come out with unhelpful comments like ". Do you always cave?" that some people without neurodiverse experience come out with.

Try and reduce demands at home. If she wants to stay in her room decompressing that's fine. Let the unimportant stuff go.

She's at risk of burnout, particularly as she approaches Secondary school. A diagnosis will be very helpful to manage the next steps.

My children all have Autism and DD2 has ADHD too. This definitely sounds familiar, particularly thinking about DD2. It's very challenging when you have other children who are in the firing line. We found getting outside every day really beneficial for regulation for all of them during primary school years. Getting the balance right with clubs and activities has helped too. DD1 likes to be busy, DD2 needs lots of downtime. DS is in between the two.

That approach will make things worse.
Parenting looks different with an ND child, by necessity.

I think though in girls looking at my PDA daughter there is internalised PDA, so high levels of anxiety, stomach aches, perfectionism.

PDA children can mask…. https://www.pdasociety.org.uk/research-professional-practice/education-professional-practice/what-pda-can-look-like-in-education-settings/

ND children respond so differently from NT. I followed all the NT advice, read all the books, DS just got worse and worse.

We found low demand parenting (which I didn’t have a name for then) worked better than anything else, and he’s now the loveliest young man who’s no bother to anyone. I’m so sad for the years before when we stuck with the usual advice.

DC with significant challenges often just don’t respond well to traditional methods. They need structure and calm and empathy. Any showing of ‘cross’ or anger, any punishment, was just massively counter productive.

This isn’t going to sound great, but my niece was like this. My sister told her if her behaviour continued she’d be taken into care or to a facility, and it scared her so much she’s stopped. They told her they’d have to let school know and separate her from the family. She was 11. I think sometimes you need to spell it clearly.

Next time she threatens to kill/harm herself with a knife, you need to call the police. That will shock social services into giving you the support you need with her. You can’t go on like this.

This. If she's taking knives out making threats, safety comes first, potential diagnosis second. Please speak with school, GP, social care. PDA is not a diagnosis, there is no one recognised treatment, and the low demand approach recommended above has limits.

I think the OP means situations where the younger child isn’t in her room for example lounging downstairs but her room is open and available to be plundered

I know 4 pda children, including one of my own. All of them had big problems with school. The furthest one of them reached full time was year 3. Not saying that your child can't have pda, and my sample size is small, but it would lead me to think it is unlikely.

You should get on the radars of early help and cahms. Not that I think they will help, but it shows willing and they might provide support. Some good resources are Dr Naomi Fisher, neurowild, the occuplaytional therapist and Newbold hope.

Thanks so much for the replies and for sharing opinions and experiences. I feel little more hopeful than before.

Just to answer a few things, we have had some life changes in the last year (nothing bad, just change) but this behaviour with Dd has been going on for several years now.

The lock on the door thing was actually for Dd's younger sibling as DD will chase him to his room but then follow him and continue to fight with him, and also go into his room and take things, break things (or threaten to) and lick things to upset him, so I wondered about a lock for him to keep him and his things safe.

I suppose it does seem to some people that we let her get away with a lot, but genuinely life is 100% more difficult the more strict we try to be. She will literally just say NO and refuse to do anything before it escalates very quickly.

For the people who said that a diagnosis won't change anything, I suppose it is the way we manage things going forward that would be affected. If I have this wrong then perhaps we do need to consider stricter boundaries and being firmer, but if it is autism/demand avoidance tendencies then we would be approaching things differently with low demand as pp have suggested.

I wonder how it works doing low demand parenting for one child but then parenting other children differently, that must be difficult to navigate sometimes.

We have been to the school several times and they have been very helpful, particularly as they don't see the behaviour themselves. We have also worked with a family education worker who has visited us and had some sessions with her. This was organised via school.

I've got the book The Explosive Child which I intent to get reading and I will have a look at the resources suggested by some posters, thank you.

There were so many helpful posts and different opinions, I haven't addressed everything but I'll have a read through again and come back for the things I haven't addressed yet once I've got through bedtime.

I have a child with adhd, with many autistic traits.

For me, the bit which stood out from your post is how she reacts to going to school - she’s anxious, she makes you late, finds going in hard. Does she also refuse to go? Have stomachaches etc? Find it hard to sleep on a Sunday night?

My gut feeling based on that is that school is a significant contributing factor here. She’s telling you with this behaviour before school that she isn’t fine in school.

I would start by trying to make the transition into school easier each morning. Fixed morning routine, ignore all non-dangerous poor behaviour, exercise every day before school, lots of time warnings before leaving, something to fidget with in the car. Ideally if humanly possible one parent gets her ready 1-2-1 and the other parent does the other kids.

Secondly, I’d start her with a good multivitamin. Kids use minerals up differently when they’re in fight or flight. And then mineral deficiency contributes to poor behaviour. Definitely aim for decent amounts of magnesium and zinc daily. If that helps and you want to explore more, there is a really good book called finally focused which goes through the science behind it.

Thirdly I’d try and ensure that she has protein at each meal, not too much sugar, and a decent amount of sleep each night.