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.

If she likes babysitting I also wondered about volunteering to hear readers in a primary school?

@bendmeoverbackwards I was wondering if your DD’s stuck thoughts could be a form of OCD? ‘Pure O’ is where compulsions are ruminations and research. Rumination can be a feature of ASD though too.

As someone who is v familiar with OCD I’d say unlikely. It does sound more typically like autistic the fixations & that things have to be “right”.

@bendmeoverbackwards I commented further up the thread but you may have not seen it. Will your dd consider medication for anxiety? It sounds like she has PDA and she's currently 'stuck'. Anxiety medication can help manage the high anxiety levels associated with PDA/autistic demand avoidance, which may indirectly reduce the intensity of demand-avoidant behaviors. SSRIs and blood pressure medication can reduce the "threat response," promoting calmness and enabling people to be more capable of managing daily demands. You may find that she more willingly engages in other therapies once on medication, but even getting her engaging more with daily life will be a big win. If she's resistant to the idea, is there anything she desperately wants to do/ is motivated by but currently unable to access? If so, you could suggest that a trial of medication may help her to achieve that thing she yearns.

I understand why you're tempted by tough love, and why people are suggesting it. But this approach tends to backfire in PDAers, unfortunately. Often it increases anxiety, triggering more intense demand avoidance.

@Whatafustercluck I would love her to look into medication and as you say, it might enable her to consider therapy. But this involves seeing a doctor in the first instance and this is something she Will Not Do (or can’t) 🤷‍♀️

Might she consider it if the motivation was there? I.e. use the carrot of her being able to do/ go to xyz if she was on medication? A special interest, theatre production, concert or whatever that she can't currently access? Sometimes finding something that highly motivates them and using that as a hook to temporarily overcome anxiety can work.

She was a keen dancer when younger at one point was taking about 8 classes/week. That all stopped a few years ago. She loves animals and theatre. Plays a bit of chess. I found a local chess club which I suggested but she didn’t take me up on it.

It’s not the lack of opportunities that’s the problem, I’ve got suggestions coming out my ears. Friends have also suggested volunteering opportunities locally.

The problem is getting her to to do anything.

She sometimes sends me Tik Tok videos, mostly of cute animals. I get that she does it because she wants to connect with me and I make suitable noises in reply…. But maybe I should now say get off SM in the day time whilst I’m at work!

She has no problem going to the theatre, babysitting or occasionally out with friends.

@Whatafustercluck she is not so crippled with anxiety she can’t do anything. Not at all.

You can go to the doctors with her and do all the talking, this is what I do with my dd. Medication could just take the edge off things for her, enough to allow her to breathe and start and work things out. You definitely need to make yourself a list and work through it one and at a time, as there is far too much to sort out with her. Rome wasn’t built in a day, and all that.

I’m not sure how else to say this, she Won’t Go, with me or otherwise.

@Shrinkhole and @Hellometime dd often asks me quite childish questions such as ‘do you still like me?’ and ‘do you hate me?’ She obviously feels a deep sense of shame and feels she’s disappointed us. I always reassure her but how would you suggest tackling these questions?

Then quite frankly you need to get a grip of your dd and the whole situation. I’m on your side here, throughout this whole thread, but you’re dismissing almost every single suggestion of how to help her. I get it, I do, I have an autistic dd who also can’t speak up, can’t access help, can’t engage in services etc. You need to toughen up, stop bending over backwards over everything, stop giving her the world. You need to decide what you want from her going forward, talk to her and stick with how you want this to be. You are enabling her behaviour, I don’t think you realise that. Sorry to be harsh, but the softly softly isn’t working .. on your dd, or you.

@Whattodo1610 I have every intention of toughening up, I can see that the gentle approach for 2.5 years has not worked. Sorry I don’t mean to sound defensive but it’s just a bit frustrating when people say oh just take her to do the doctor and put her on medication (she will not go), or take her out for a walk, do chores at home. I haven’t been just sitting on my laurels for 2.5 years, I’ve tried all these suggestions and more.

Regarding the WiFi, someone upthread suggested turning it off in the daytime. We actually did this a few years ago. It had zero effect, dd just waited around till 4pm and it didn’t motivate her at all.

And thank you @Whattodo1610 and everyone else for your advice, I am truly grateful 💐

@bendmeoverbackwards it sounds like the issue is that while she can tolerate ad hoc, short, controlled, time limited activities that intrinsically motivate her, she's currently unable to tolerate longer term structured activities - particularly if it's presented in a way that implies too many expectations up front. So if volunteering opportunities are presented to her as volunteering opportunities, or chess club (meets weekly) then the wall comes up.

So, taking her interest in animals (very common among autistic people because animals have zero expectations and a calming effect), you could frame something as a no pressure day out (or even 30 mins) to, say, an animal sanctuary just to hang out with some animals. See how it goes, repeat again but with an additional low demand 'accidental' step, such as you leading a conversation with a staff member/ volunteer about their work and whether they enjoy it. Or see if she wants to do some animal video editing for a YouTube channel (if she enjoys that kind of thing). So you begin to move it, unknowingly, slowly, into 'routine' or 'structured' territory, step by step. You may get to a point within a few visits where she feels able to tolerate a little more structure (weekly visits for example). Over time, she may begin to see, for herself how much she'd enjoy working with animals.

I know first hand how frustrating all of this can be for everyone, how painfully slow progress looks and feels. And parents worry so much about their child being 'stuck' in a loop which feeds everyone's anxiety. In my view, it's a really good thing that she can do some things she enjoys, however limited. It is something to build on. This comes from a parent whose daughter was unable to leave the house for any reason at all for several months - at 9 years old. They rarely remain stuck forever once you find the right interest and strategy.

Other than therapy, what other support do you have? Are you on any PDA forums/ local meeting groups?

I get it didn't motivate her, but she shouldn't be on social media during the working day. So turn it off permanently in the day and over night, so that is never an option for her again.

Honestly OP I’m on your side, I personally know how difficult it is. But at some point you have to think well if dd is so resistant to every single thing (which my dd was too), then where do I go now, what can I do next. The truth is, only your dd can help herself. What you can do, is lay down your boundaries and expectations - and stick to them. No more allowance/privileges for doing nothing, no more dossing around while others work, no more continually blaming you for everything. She has to be told, and understand, her behaviour, attitude and language are all unacceptable and will have consequences.

That's actually a good starting point, even if it doesn't feel that way. I can tell that you feel quite defensive, and all I can say is that I've walked in your shoes. My dd is much younger (9), we are slowly getting there.

Good luck, whichever approach you choose.

Edited sorry, this was in response to your most recent response to me @bendmeoverbackwards about her not being so crippled by anxiety they she cant do anything.

“I like you and I love you but I hate your behaviour - I hate that you are doing nothing with your life when you have so much to offer.”

I guess what I'm saying is it's a tricky situation, but the only thing you can change is your own behaviour. She will give lots of reasons why she can't do things or needs the internet in the day. But you can decide, no I'm not having you sotting in your room on tiktok all day while I go to work, and turn the internet off as it's aa better option than leaving it on. How she responds is up to her, but you have made the decision that is right for you.

You can't make her do anything. But you can decide what you are going to do, and funding her wasting her life in her room is something you can stop.

I think the issue is you have been pussy footing (I do understand why as you thought with time she’d come around)
She spends her days bed rotting on tik tok and you fund everything including nice toiletries, expensive trips to the theatre. What incentive does she have to change.
Very much agree with @Whattodo1610
You might have tried no WiFi off for odd day but day in day out for 2.5 years with no phone, WiFi or Netflix I bet she’d have got bored.
Chores. Every day. Wake her up early, you need to do x and y. Get home and not done, be cross with her I’ve been at work 8 hours and you haven’t even washed the pots or pegged washing out like I asked. Rinse and repeat day in day out.
No allowance or phone unless chores done.
I’m surprised you aren’t more angry op.
Not sure if it’s an old fashioned northern saying but ‘who do you think you are Lady Jane’ has sprung to my mind multiple times on your threads. I sometimes am very blunt with my DD she’s 20, if she’s taking the piss I would literally say that. She knows when pushed me too far.
Do you like me/do you hate me would be met with I love you and am doing everything I can to emotionally and financially support you. Look at what I do for you. If I hated you I wouldn’t pay for your food, phone, allowance, roof over head. You are an adult there’s no requirement for me to support you. Blunt but factually correct. Humour? - yes love I pay £100 a month to all the people I hate. Do you have any shared humour or tv show catchphrases - I say catch yourself on or we don’t all have a trust fund like Jenny Joyce (Derry girls) to DD when she’s acting entitled.
I think mentally giving yourself permission to be tougher is a big step forward for you. She won’t like it, she’ll argue back but stand firm. Try and think one step ahead.
Eg if she says no WiFi means she can’t study or look for a job say well you can use library computers, nice 2 mile walk there and back will do you good etc.

Yes agree with @Terfymcnamechange. I love you but not your behaviour. If she says I can’t help it then that leads into the I’ll book you in at gp/counseller and come with you if you like. Stuck record.

I AM angry. But I suppose I was giving her the benefit of the doubt due to her poor MH. And the fact that a good relationship with your child can only be a positive thing.

But enough is enough.

Reading these posts makes me feel positive about making changes, gives me a feeling of relief.

Hi OP I have been following this as although my DD is 10 she sounds similar (ASD, recent mental health breakdown, sort of tyrannical behaviour and separation anxiety from me.)
I can well imagine her like this at 19.

DD has been sat in bed watching Netflix shows for months (her MH problems were/are severe and significantly affected her physically - lack of food/fluids - so we ended up in this depressing state.)

I think she was in burnout and when we first tried to remove the screen, it was hours of violence and frightening self injurious behaviour. So we gave up. Focused on getting out once a day but still a lot of time on screens.

Anyway we have completely removed screens again this week and although the initial reaction was awful, it’s been great for her now. She still sat in bed most days but reading and then started engaging with her sister more to play with someone.
I really feel this ASD/“screens regulate them” idea is something I’m uncomfortable with. It’s a total out basically because life is tough.

What I’m trying to say I guess is with high anxiety ASD you get told low demand is the best route, and it often is until it isn’t if you know what I mean ! There’s a point where maybe they’re past burn out but just STUCK. Endlessly ruminating but they can and need to respond to strong boundaries.

Implementing these together with my DH has been really effective, I wonder when you lay down some new boundaries, if you do it together it will have even more impact.

I fully empathise with how challenging it is and my DD is still a child god help me. ! So acknowledge it’s infinitely harder when they’re older.
But I’ve started to be fairly brusque with the constant misery: “I’m so anxious/hate my life..”
”Aw dear, sounds tough, have you seen the cat? Does she need feeding again?”
and walking away when she is rude to me - and it is self preservation as my god, it’s hard not to get depressed yourself getting sucked into it. And they need to know it’s unpleasant to hear.

Anyway I know it’s very complex but wishing you luck, it certainly wears you down