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.

Lock on siblings door.

I have an AuDHD child.

meals - we did years of assemble your own - so eg plain pasta with choice of two sauces or just cheese in the middle.

lock on knife cupboard or hide them. My dd did escalate to self harm

Have you spoken to your GP? Is this new behaviour or long term behaviour that is escalating? Ask for a camhs referral.

I have approached the GP to arrange the referral. It has all been done via the medical secretary though. I only did this last Monday and they said it would take 1-2 weeks to process. This has been ongoing for a number of years but life is increasingly difficult.

I have only requested an autism assessment for DD. I had to select and I thought autism was associated with PDA so I put that. I wonder if I should have requested AuDHD? I feel a bit lost with it all. I just want my daughter to be happy

When we had an assessment (all be it a few years ago now!) the problems had to be evident in a number of settings, not just at home, for a diagnosis.

Could this behaviour be due to something going off at home, changes in family circumstances etc.

Not all behaviour like that is due to neuro diversity and sometimes if we just assume it's that, the route cause can never be discovered.

Is there any way you could afford private psychotherapy?

PDA isn’t a stand alone diagnosis. It comes under the autism spectrum and is rarely diagnosed in the UK though within an ASD assessment one of the traits identified might be demand avoidance. Kids I’ve known with demand avoidance profiles usually find it very very hard to mask, so the fact your dd doesn’t display these features in other environments would be surprising.

she might be autistic, though hard to say as those behaviours could also be a response to her environment. Has she experienced any trauma / disruption?

If her behaviour is that dangerous have you contacted social care or your local family support service?

My DD behaved like this before diagnosis. AuDHD. Suggest you look at right to choose if in England and in the meantime look at how to parent ND girls - if she is masking at school which it sounds like she is, that is a lot she is bottling up to then release at home.

My DD behaved like this before diagnosis. AuDHD. Suggest you look at right to choose if in England and in the meantime look at how to parent ND girls - if she is masking at school which it sounds like she is, that is a lot she is bottling up to then release at home.

My DD behaved like this before diagnosis. AuDHD. Suggest you look at right to choose if in England and in the meantime look at how to parent ND girls - if she is masking at school which it sounds like she is, that is a lot she is bottling up to then release at home.

Ffs sorry for multiple posts

My DD was like this before she got support in school ( they thought she was fine until she had a meltdown there). Turned out she was autistic, but masking until she just couldn’t anymore. We looked at PDA but the doctor who diagnosed her said it was more likely she was just so overwhelmed that she was constantly in fight or flight. Now she’s got more support and we’ve learnt how to better understand her, things aren’t perfect but so much better.
in the short term I’d look for a sensory integration occupational therapist if you can afford one.

Put the lock on the inside of your DDs door so she can lock the door if she needs to. Also give her lockable cupboard and lockable wardrobe and lockable toy box so she can lock things away if needed. Use a number code with the same number? Do not put a lock on the outside of her bedroom door, locking her inside a room would ring alarm bells and seems very wrong.

When we had an assessment (all be it a few years ago now!) the problems had to be evident in a number of settings, not just at home, for a diagnosis.

This was also my experience OP. When my child was referred I had to have 3 things 1. Support for the referral from the SENCo at school 2. A statement from the class teacher 3. Parental support of the referral. I was told without those 3 things the assessment would be declined at a ‘triage’ stage.

I also have a child with AuDHD and the inability to control their rage and then not really know why they were so angry resonates. Look up adjustments that can be made at home to help, in my experience they do make a difference. With us it’s a rigid routine from wake up to bed. A meal planner that we don’t deviate from. Praise all the time. Ignore the small stuff that isn’t life or death. Gosh there is more. Oh and tag teaming with DH. We don’t do hardly anything as a family unit anymore. The younger siblings need a break. Me and DH need a rest from it. Our child with SEN manages much better when they have our full attention. It’s sad but you need to do what works.

Also look up after-school restraint collapse if they are masking all day at school.

We are always told ‘ask your child how their day was’ etc nope! My child wants a drink and tv and nothing else. No questions. No Spanish Inquisition. Alone time to decompress.

Do you mind me asking what sort of support your school provided? Our school is lovely and supportive with a lovely nurture team but because she seems ok there, I wonder what more they could actually do to help. They let her wear ear defenders when she feels the need and she is always welcome to go to the nurture team (which she does do). Although she gets on ok while she's there, she gets very anxious about going to school in the morning. We've always made it in so far but we are often late by the time we've negotiated everything we need to do to get out the door. She usually explodes immediately once she's home again.

Throw away any sharp knives with pointed tips and replace them with the Viners “stab safe” (not actually safe as can still slash, just much safer) range. Then you know that if she tries going for one again the ‘gun has been unloaded’ in advance, as it were.

It sound very like your girl is doing the holding it all together all day because she is too embarrassed to have a melt down at school because she is worried about being laughed at, teased for being a toddler, avoided, suspended or even expelled, but at soon as she's home where she feels safe, everything explodes. I would definately look at whether the school could support her with decompressing at intervals throughout the day. What causes most stress and what is she most unhappy about? How could that be altered to be easier? Also what is her routine as soon as she gets home - does she get some alone time and how?

If you haven’t already, check out the PDA society website for resources and advice. The masking at school and meltdowns/restraint collapse at home can be common with many ND kids. There may be things you can do at home (and school can do there) which will alleviate the underlying anxiety driving her behaviour. The Explosive Child is a good book too. It may seem completely at odds with everything society suggests is the right way to parent, but PDA kids often need to be parented in a very different way. This is particularly hard if there are siblings as things may not appear ‘fair’. But letting her have as much control as possible may be the shift that allows her anxiety to dissipate which in turn allows her window of tolerance to grow and her overall anxiety and behaviour to ‘mellow’.

At Peace Parents is a great site and insta account that explains clearly all about PDA and accommodations that can help.

“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.”
why are you bargaining with her? I know mn will be appalled, but why are you letting her rule the roost? Where’s the consequences for this awful behaviour?
devices should be permanently removed!

We had trouble getting the school to help to refer because mostly DC2 behaved in School. They did get an AuDHD diagnosis though as there was enough evidence.

We also went through the GP to get that referral.

Has she had an EHC Assessment yet avd how’s her speech & language?

Take her to therapy for children. Something is bothering her.

I'd prioritize keeping your other child safe, involving Early Help and speaking to school about her behaviour at home. Speaking to GP and school about the knives and threats. Also, keeping in mind that it's ok to have boundaries and limits as a parent/family, PDA or not. If needed, you may need to separate the kids as much as possible.

Locks are ok.

When did the behaviour start?

Required support can vary widely between children so not sure how helpful this is, but DD gets ear defenders, fidgets, movement/brain breaks, ELSA, a quiet area she can go to to do her work, extra time and small room for assessments, SaLT and a 1 to 1 (mostly) LSA. She did have OT but that stopped recently as she doesn't need it any more. There's probably other stuff I've forgotten but those are the main things.

OP, please think carefully going forward. There is a push, be it hidden behind the veneer of ' we just want to help ', a push towards offloading Neurodivergent children as trauma or FII cases. This narrative ticks multiple boxes - it saves the Local Authority resources, it saves school, it is a tool to make the problem go away. Kids often end up excluded, mum is a jibbering wreck in the corner after the hideous systemic gaslighting and so it spirals.

YOU KNOW BETTER THAN ANYONE. THIS MEANS THAT YOUR DAUGHTER IS INDEED AUTISTIC WITH A PDA PRESENTATION. ADHD OFTEN ACCOMPANIES.

I wrote this in capitals because I want you to see this, feel this and know this. Your instincts know.

Trauma is often a co morbid of being Autistic in a rigid system, with traditional parenting styles and demands upon us to get them in school, deal with outbursts no one sees. So you probably have some trauma just because she is Autistic.

Go private.

Find an ADOS assessor, NICE guidelines approved. You will want this diagnosed as gaslighting within the system escalates. It will unfortunately.

I'm on the receiving end of a FII narrative from my ex at present. This would also fulfill schools need to do the minimum and get rid of me if push came to shove.

@Leafysocks
Google PANDA PDA infographic. Might give you a helpful start for a way forward.