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.

I’m sorry if people thinks this lacks understanding by I agree, or at least that OP should try this is a serious way.

DD3 is young adult, she’s not a 12 year old refusing to do her homework because she’s overwhelmed.

If she wants privileges young adults have like WiFi she needs to be doing something than at home on her phone all day.

Some experts also deny the existence of masking. Others strongly disagree. PDA strategies are working well for us (and it's anything but a short term fix if you do it right, but it's long, hard and slow), and our dd has a very similar presentation.

But you're right, I don't want to derail the thread by arguing about PDA. It's another perspective for the op to consider, or to disregard if she's exhausted it already.

I mean this with empathy, not as an attack.
How old is your child? Did they start school refusing or similar? How did you get them back engaging with life if so?

It sounds like you have recieved a lot of support from PDA online communites. That is lovely if you feel they have helped you, but just be aware none of what they say is evidenced based and if you are using a low demand approach on a school refusing child it may cause long term problems.

Anyway, I'm sorry you are also going through this as it's very hard.

@Terfymcnamechange Unstructured, indefinite demand-avoidance without a plan can lead to long-term problems (such as the ones op describes).Thoughtful, staged, low-demand approaches can prevent them. As with all strategies, it's how you implement them that dictates long term success. Research into PDA informed strategy efficacy is careful to make this distinction.

For school avoidance (whether linked to anxiety, autism, or trauma), research and clinical guidance generally supports reducing overwhelming stress first, then gradually rebuilding tolerance to demands, keeping expectations flexible but not absent, prioritising relationship and safety, not compliance. PDA-informed approaches can fit very well within this if they’re used as a bridge, not a permanent end state.

My knowledge comes from engagement with informed, professional services (including a voluntary role I have with a local social enterprise organisation specialising in this) rather than online communities. I have, however, used the online communities to feel less isolated from a mental health perspective. Solidarity, if you like.

My dd is a confident, determined little go-getter who is naturally empathetic, kind and confident. She has, however, experienced autistic burnout, the traits of which can result in PDA-like behaviours. She doesn't have a PDA profile when regulated and well supported, and indeed many PDAers can and do thrive if they're given the right tools to work with.

This is the last contribution I'll make to this thread, not because I'm flouncing off (I'll continue to follow it with interest and hope) but because this isn't about me and my daughter. We're doing much better and we very nearly have our beautiful daughter back again. I very much hope for the same for the op.

Yes I’d also question whether screen access is doing any good. I know how awful I feel if I spend hours on phone doom scrolling.
I bet her screen time is shocking if she was willing to show Op.
I wouldn’t entertain any nonsense about talking away her self regulation tools.
If animals are her thing she can watch animal shows on tv. Or interact with animals in real life. It’s clear Op would be thrilled and would go out of her way to facilitate if the dd signed up to volunteer at a local animal charity, cinnamon trust dog walking etc.

am def going to have a read when I get time, friend is on these on line communities re pda and how to manage and I don’t see how this “low/no demand parenting/life” works, other than like the dd here, the teen is controlling, abusive and very very demanding!
I don’t see how it works that nothing can be asked or “demanded” of them… yet they do nothing but make demands of others?

I am sorry this is happening. You seem totally lost as to what to do and seem stuck in the type of response you would make towards at 12 year old DD e.g. turning off the WiFi. You describe problems starting a number of years ago. In one of your posts you allude to the journey to the state 6th form being too difficult and pointing out the 15min walk to the station plus travel so you paid for a small private school and you stiĺl pay for everything. Life is full of inconvenience but not for your DD..OP you are being manipulated. A small thing..young adults still living at home really do not want to watch TV with their parents - its an odd short term goal to have. What to do? - stop paying for things. Insist on routine - doing her washing, getting exercise, helping cook. If she wants uni (that isn't shit - her words) then she goes back and takes an Access course. My DS is autistic and functions positively with routine. Sorry but under our roof we expect co-operation. You can love someone, set boundaries and have high expectations of them. Or you can love someone and let them walk all over you.

Can you link to the research you mentioned?

My daughter was formally diagnosed with PDA twice, once at CAMHS and once by a paediatrician. She now works, lives with her boyfriend. I used low demand parenting but it wasn't no demand parenting- there is a big difference. You let them drop the small stuff but insist on the bigger stuff. As they trust that you understand them, they become more able to tolerate the demands you do make. So, for example, my daughter did no chores and no homework but she did go to school, walk the dogs, come on holidays with us. She ate her own food and wore what she liked but she did have meals with us.

In the interests of balance, you might like to read these too. PDA Society includes a lot of resources considered through different lenses.

https://www.pdasociety.org.uk/what-helps-guides/pda-approaches/

https://www.pdasociety.org.uk/research-professional-practice/

I had a conversation this afternoon with dd about the TikTok video and how it was inappropriate. She said she was explaining how she feels. I told her this is someone else’s life and scrolling through this stuff just encourages rumination and introspection. And I’m not surprised she feels that way with no structure so what research into uni courses has she done today?

In the past I’ve engaged with this communicating via TikTok videos because I stupidly thought some communication is better than none. And people told me it’s good that she talks to me. But I’m changing that now. I’ve told her I’m always willing to listen to HER, not someone else’s content.

This is a great response on your part, curious how she took it.

@midnights92 she says I’m ‘still not listening to her’. She now ‘can’t’ do anything due to how she’s been feeling since 11 years old 🤷‍♀️

Sounds like she's on the back foot. Keep doing what you're doing, open communication and support if she actually wants to talk but with boundaries.

Agree ignore.

well done OP sounds like you are making some good changes.

i know it’s not a nice thing to say about a young person in pain, but she is bullying you and very controlling. She doesn’t seem to have a well developed sense of empathy (whereas you are extremely empathetic) and being so enmeshed with you must be very difficult for you

Well done OP.

I would say to her, I know you feel you can't move on, but what does that mean for you? Are you never planning on doing anything more than you are doing now? That really upsets me, and I don't think you are happy if you are sharing these tiktoks. I won't force you to do anything you don't want to do, but I want you to think about where you want to be in 3 years. We can make a plan to move towards it. It's our job as parents to do what's best for you, and giving you the option to carry on like this isn't the right thing to do. We love you so much.

Then when she starts talking about the past, say: the past is over. What's done is done. You need to move on.

@bendmeoverbackwards You've made a great start, hold firm! You're absolutely right to ignore the TikToks and to ignore rude or whiny messages.

Challenge her that you are listening but you are not agreeing with her.

You have heard her narrative about the diagnosis many times, you have said that you are sorry for not going about it the best way but you were trying to help her. You now wont be discussing the past any longer as it cannot be changed and is not helping her to move on in her life.

It’s a shame that she feels she can’t do anything right now (It’s her own time she’s wasting) You are available and keen to help her just as soon as she does feel ready to come with any suggestions for her future (not limited to uni. Any suggestions at all that are constructive; therapy, benefit applications, volunteering etc etc)

I’m sorry to pick on you but honestly I don’t get how PDA works in the real world.

What happens if work make demands on her. I mean all jobs are pretty demand based surely?

Or her partner? Does he have to tiptoe around not making any demands for himself? Isn’t that very unfair on him?

What if she has her own kids? Babies are kinda demanding.

Pda is anxiety driven due to demands. As the yp grows up they have much more control over what happens in their lives and they have hopefully learned strategies.

You get some adults who haven't made it, who are still at home, doing nothing. But others have been able to benefit from the low demand environment growing up and can flourish. Some need more scaffolding than others - my daughter's boyfriend is very supportive of her.

Do you think your daughter was a higher-functioning example of the PDA profile though? Given she was able to attend school?

My work involves children with ASD and it’s been interesting to note more and more psychologists highlight the PDA profit in some girls.

School is probably the highest demand - I think a child with ASD who can manage to attend school into their teen years is doing pretty well. 14 years seems to be the hardest year for girls on the spectrum, if that can be navigated and they can stay at school, transition into work and/or further study seems smoother. Home-educated teen girls who have been diagnosed with a PDA profile seem more likely to transition to adult responsibilities if they have part-time jobs, see friends and engage in activities where they see same-age peers.

My concern with the PDA profile rising in popularity, if you like, is that it seems unclear where the line is drawn between PDA and anxiety. Anxiety is fairly ubiquitous in girls with ASD and developmental stages move fast in children. It doesn’t take long to become socially left behind. I have yet to see a girl on the spectrum who’s been removed due to PDA/anxiety reasons ever go back to school.

(I have seen children with ASD removed from school for a year or two successfully go back, but that’s been when the removal was parent-instigated, usually when the parent was never that sure about school anyway, and the child was doing ok socially at school before removal).

Maybe “success” with the PDA approach is subjective, and school attendance isn’t necessarily the main goal. One psychologist - who has had decades of experience working with burnt out, erstwhile high achieving girls on the spectrum - told me that if work and/or further ed were no longer possible her aim was to encourage activities/hobbies where there was community interaction and ideally an associated small income.

Irrespective of whether or not the OP has approached PDA parenting “correctly” the OP’s DD is in a pretty terrible place, and I don’t think things will improve until the days spent scrolling Tik tok stop. It’s known that there a risk of contagion around suicidal ideation, hence media restrictions on reporting, yet the algorithm is clearly serving this up to the OP’s DD.

A whole day of lying around watching other teens and young adults talking about suicide isn’t helpful, is it? We worry about boys and their access to porn because of how repeated exposure normalises increasingly violent activities - no one would say, oh, this teen has ASD and he needs to watch porn all day to self-regulate, would we?

Interestingly I was talking to my dd's LA caseworker and inclusion worker about this yesterday. In my area, they only state 'ASD with associated anxiety' because this covers a spectrum that includes those dc who struggle to cope with any and most demands every day, to autistic girls who burn out and temporarily display demand avoidant type behaviours (like my dd). It recognises that heightened anxiety and nervous system dysfunction are the main features, associated with autism, but that demand avoidant traits can be transient in nature and not fixed.

In burnout, the focus tends to be on removing as many demands as possible until some recovery takes place, then building tolerance to demands as capacity increases (and it does usually increase, though it can take a long time). This is because in burnout, you temporarily lose the ability to access skills you once possessed, whereas at the extreme end of demand avoidance, it is present since birth and impacts daily functioning to a greater or lesser degree.

The PDA Society has published research papers and opinion pieces on whether PDA is a distinct 'syndrome' or more like a spectrum or scale within the ASD diagnostic criteria. The reported experience across the spectrum is the same though - taking a PDA informed approach is most effective when you don't just completely remove all demands for an extended period. And it's most effective when implemented early enough in terms of child development. Autistic girls are struggling more because they tend to get diagnosed much later.

This is where my confusion comes in about how to integrate what people say about PDA with my knowledge of CBT which tells me (with loads of real world experience to back this up) that avoidance is what maintains anxiety and causes it to generalise and therefore what is required to tackle it is graded exposure.
A low demand approach looks like perpetuating avoidance to me. Anxiety symptoms get worse and not better when someone avoids the trigger and family accommodation of maladaptive avoidance is something that I would usually say is a bad thing because it enables the person to fully avoid all their feared activities which means they will just do less and less
I see this playing out left right and centre with lots of teens refusing school, never going out or seeing anyone because it makes them anxious. There is no immediate incentive to change this as they are cared for by parents and spend time just doom scrolling Tik Tok on their beds all day. Some of them add smoking cannabis into that mix and even get it prescribed ‘for anxiety’
To me this undesirable situation is predictable in a behavioural model and the treatment for anxiety is still to gradually build up exposure to the feared stimulus.
I can entirely accept that PDA is anxiety based but the treatment for anxiety is SSRIs and CBT.

And yet she refuses therapy to deal with her past issues which you have repeatedly offered.

If a person really can’t do anything because of how they feel due to past trauma then they will usually jump at the opportunity of therapy which many people with less fortunate circumstances have to wait for years to get.

If she isn’t willing to tackle it then it’s just an excuse to maintain the status quo that has been pretty effective in the past.

I am a bit gobsmacked that you have in the past entertained communication via the medium of her sharing Tik Tok videos . Tik Tok is a cesspit of horrible content and a prime villain of the echo chamber, addictive scrolling stuff. There are people posting from inpatient psych units with competitive self harm and ED behaviours and if you watch one it will serve you up more and more. By agreeing to watch them you are condoning that so I fully agree that you should stop.