Dd, autism and cake - Thread 2

[bendmeoverbackwards]

I had no idea that my first thread would fill up and I am in awe and overwhelmed at the amount of support.

I am going to re-read all the responses and make a plan. Thank you, this has been eye opening.

No she doesn’t have a PDA diagnosis. It’s just seems to align with a lot of her behaviours.

@Whatafustercluck thank you for sharing your DD’s story and I agree that is real progress, well done to her and to you. That’s amazing progress for 4.5 months and the difference between her and my dd is huge.

You have been clearly trying your best to do right by her OP, so I don't mean to put you down at all. The social media grouos are an echo chamber that enourage others to do the same as them i.m.e don't expect a single thing of them, let them do nothing because of burnout etc. In my opinion some people do this partly to justify their own actions and feel better about their situation, because they want the conflict to stop. But there is no evidence that this approach works in the long term (and some evidence it is harmful). I'm not trying to criticise, but to point out that actually people on social media and people who volunteer for charities aren't qualified to give advice, only offer support for others.

It sounds like you are making changes and I feel proud if you for doing it! I would start very small but with an expectation. E.g we will cook together ever friday and you need to come and chop the veg, every week. Or You need to go and buy the family bread and milk on Saturday from the local shop, and it doesn't matter if you feel like doing it ir not. She will kick back, but slowly over time she will learn how to cope with her emotions, distress and uncertainty and build up to other things.

Well done to your DD and to you for getting through that.

I think that reasonable expectations for a 9 year old vs a 19 year old though are a hugely different matter.

So did she have the other PDA traits? Like bossy play (she is always the teacher/ doctor / vet / waitress and others or teddies/ animals are simply props)? Repetitive play? Role playing as a coping strategy in life (my daughter took Hannah Montana as a basis for her early teens personna)? Seeming sociable but lacking authenticity? Unable to distinguish social hierarchies so speaks to adults like they are friends? Avoids demands in a very subtle way, often putting as much effort into avoiding the demand than it would take to do the task? Collects dolls? Is scared of dressed up characters way past it being age appropriate?

PDA is all of this. It isn't just about demands. And the Pathological part is important too.

You can have demand avoidance without it being full blown PDA.

My other daughter has autism but not PDA. She can really dig her heels in and when she is stressed, she shows signs of demand avoidance. But she doesn't have the other PDA traits.

It's complicated.

I do think it can help to calm the environment for autistic/ PDA children and young people so they can use their available capabilities to do things and extend those things.

But hopefully they can extend them over time and not get stuck.

My daughter with PDA has tended to make huge leaps and coped. She didn't use public transport for years, now she does. That was a decision she felt able to make, it wasn't from me encouraging her or small steps. She just decided. It's been the same with everything.

I guess that what you need is for her to decide she can do x or y too. I honestly never had any success with pushing her - it all came from her. But she was always in school/college/ work so she was constantly seeing herself able to deal with things. Your problem is your daughter is not getting that sort of opportunity because she is at home.

I would suggest you look into neuro feedback and see if she will try that if she simply won't engage with volunteering/ walks / gyms / holidays / shopping to give her the push as it won't imo work coming from you.

I agree with your second paragraph.

My daughter's extreme demand resistance only really comes to the fore when she is disregulated for various reasons (hungry, tired, worried about something, angry, in pain and weirdly...very excited about or greatly anticipating something - I suppose that's the flip side of worried?)

The rest of the time you can negotiate with her a bit.

She did the sudden deciding thing. She decided to stop hitting us a year ish ago. Although that coincided with my reading Eddie Gallagher's useful book Who's In Charge, so maybe my attitude changed, although I didn't particularly do anything differently. She also did an anger management programme at school, although she didn't realise what it was.

It's not universal I don't think?

Autistic people who mask can understand the concept very well I think.

DH is a university lecturer and actually describes his lecturing self as "Mr Surname" and treats him almost as a separate person. It was very odd the first time I saw him do it.

DD also does an Oscar winning performance of "lovely granddaughter" with my mum but she can only keep it up for a day. She also does wicked impressions of school staff, capturing tiny details of speech, posture and body language.

You must see those are such tiny glimmers in 2.5 years and still very much on her terms.
The en-suite thing I wouldn’t have tolerated at all. It’s your house it needs cleaning - you don’t want it to smell or limescale damage the fixtures etc. Either you clean it or cleaner comes in.
What was consequence of her slamming door? Totally unacceptable to treat your home in that way.
She sounds as she presents as a much younger child. I’d expect an 11 or 12 year old to be able to heat a frozen pizza. The picture you paint of asking do you like me and slamming doors and stropping off is very tween. I’d wonder if some type of learning disability that has been overlooked due to Autism diagnosis. She sounds like she’s behaving at least 7 or 8 years younger than her chronological age.

Hello there, would you mind saying what you suspected? I’m I wondering if it’s the same as what I thought.

Are you both thinking of a personality disorder?

It is a feature of PDA, not autism generally. My other daughter is autistic and loves characters. When we took them to Disney land Paris, the one with PDA was petrified of the characters, apart from those where you can see their faces, while the one with autism but no pda was high fiving them, queuing for autographs and photos etc. They were 4 and 5 at the time.

With autism it's different - they don't understand and they never do, even though you can teach them the appropriate response.

I think that very much depends on the autistic person. DS can certainly understand the concept and did from quite young.

Sorry, I was talking just about the children who have the problem with the concept.

Yes. I mentioned Borderline Personality Disorder to the Op pages ago and she said it had been mentioned before by someone.

Its not to say the DD isnt also autistic, its possible for a person to have other things going on apart from the usual co-morbids of autism, and as someone who’s family and extended family is ND to quite an extent as well as there being serious MH problems in others I’m just getting a feeling.

I also got that feeling, which means that the standard PDA behaviour management advice wouldn't necessarily work. Not doubting the autism diagnosis at all, it just feels from a distance that there might be something else going on as well.

I’d expect an 11 or 12 year old to be able to heat a frozen pizza

@Hellometime her capability varies hugely depending on stress levels. I was utterly confused that 2 months earlier she couldn’t manage a frozen pizza yet she baked a cake completely independently and cleared up afterwards. She’s far more capable when the pressure is off.

What would you suggest as a consequence of door slamming?

What did you do when she did it?
I’d have followed her to her room and called her out for being rude and disrespecting your home.
Zero chance I’d be paying phone contract or allowance if she’s being openly rude to you.

I’d suggest that DH deals with it and when she next appears tell her her behaviour is unacceptable. You need to take a step back. She is playing you.

A mother with a younger child constantly appears on my TikTok (when I’m doom scrolling). The child has PDA but what is screamingly obvious is that she absolutely hates her younger sibling getting her mother’s attention. Is that a disorder or is that being a brat?

It’s also entirely unclear to me how that child will grow to function in the world when she is being pandered to so excessively.

This. Stop pandering to her as it isn’t working.

So did she have the other PDA traits? Like bossy play (she is always the teacher/ doctor / vet / waitress and others or teddies/ animals are simply props)? Repetitive play? Role playing as a coping strategy in life (my daughter took Hannah Montana as a basis for her early teens personna)? Seeming sociable but lacking authenticity? Unable to distinguish social hierarchies so speaks to adults like they are friends? Avoids demands in a very subtle way, often putting as much effort into avoiding the demand than it would take to do the task? Collects dolls? Is scared of dressed up characters way past it being age appropriate?

@Arran2024 I don’t really recognise any of these traits in my dd. I had just suspected that PDA might be present but without proper assessment we don’t know for sure. Same with possible BPA, it’s all speculation and guesswork. And I actually think another label isn’t helpful. I want to deal with the actual issue ie DD’s failure to launch.

The wider discussion about PDA is interesting. As people have said above, the low demand approach seems to be recommended among parents of PDAers, certainly from what I’ve read on various groups. And in the past I’ve taken this advice. But it’s interesting to read that this isn’t backed up by proper research. I suppose my confidence has dropped in recent years, I spend hours working out the right approach, and these parents seem so confident that low demand is the right way. Especially when they post success stories of their older dc eg 3 years ago my dc wouldn’t leave their bedroom and look at them now with a job/partner etc. It’s hard not to trust their approach.

I agree with this. A counsellor I saw a while ago told me things that cause anxiety should not be avoided; rather the person in question should learn that anxiety isn’t dangerous and can be overcome.

I also read a book about OCD, this recommends reducing accommodations -

https://www.amazon.co.uk/dp/0190883529/?bestFormat=true&k=breaking%20free%20of%20child%20anxiety%20and%20ocd&ref_=nb_sb_ss_w_scx-ent-bk-ww_k0_1_11_de&crid=UJ1SV2I2KJPU&sprefix=Child%27s%20ocd

The thinking is that by accommodating OCD traits, this just fuels the anxiety. Dd has some of these traits eg about doors and cupboards being closed.

Regarding TikTok I’ve been extremely naive. From what I can see, dd mostly watches harmless stuff - animals, hair/make up, cute babies, food etc. And she shares some of this with me. But I can see that she’s also been looking at more sinister stuff eg suicide talk etc.

However, at this point, and given everything op has said about her dd, the far more likely impact will be that she regresses further - perhaps to the point of no longer being able to do even the limited things she does now. This won't be a popular opinion though, and my intention isn't to worry the op more than she is already.

@Whatafustercluck this is what has been worrying me for so long - suppose dd gets worse if I change my approach?

I suppose my confidence has dropped in recent years, I spend hours working out the right approach, and these parents seem so confident that low demand is the right way. Especially when they post success stories of their older dc eg 3 years ago my dc wouldn’t leave their bedroom and look at them now with a job/partner etc. It’s hard not to trust their approach

To play devil’s advocate, every parenting theory or approach will have parents who are 100% sure that their way is the best way and the results prove it. It’s very reassuring to stressed parents to think that if you approach x problem using y technique then this will work and there is a guaranteed positive outcome. And if there isn’t, it’s not because the method is wrong, it’s because the child has been mislabelled or the parent isn’t doing it correctly 🤷‍♀️.

I remember, years ago, a post on here about unschooling. A mother had pulled her children from school and was expecting them to organically show interest in reading and maths, because she’d been told that would happen. Instead, they’d spent months gaming.

Im always interested in those posts, partly because I work with children with ASD but also because when one of my daughters, at 14, became very anxious, dysregulated and distressed with school refusal we did the opposite of what most MN posters advocate. It was brutally hard and she was very upset but the outcome has been brilliant.

Personally, I would go back to basics with your daughter. No one is going to be regulated or content after hours doom-scrolling, no sense of purpose, no regular social contact and no exercise. After 2 1/2 years of this she’s not burnt out, she’s just adrift.

ETA : and while your worries about suicide if you set boundaries are understandable, her scrolling TikTok content about suicidal ideation is very risky, IMO

No she’s never self harmed. So I take this cautiously to mean the risk is quite low. But who knows? The advice is to never take threats lightly.