32yo daughter with autism, adhd, depressive anxiety, avoidant personality, social phobias and is transgender

Thank you for your post @metamorphosis ,

It sounds like organisation and drive is a huge factor.

Do lists help? Or visuals?

On another note, when I have been significantly unwell, I had my medications delivered to my house. Is this something your local pharmacy can do? My pharmacy liaised with the doctor so I never saw a script. They delivered medications to my house weekly in blister packs. This lasted for years.

I hear it can be so draining, so I'm glad you are finding ways to care for yourself too.

All the best with everything,

tyme

Thanks for those suggestions @tyme. Unfortunately list making doesn't work at all consistently, it does occasionally.

Visuals aren't things I engage with myself easily and find hard to generate for others. I've shown her whatever visuals I use myself, she's shown no inclination to using anything like them, though now that you mention it, I might try something different with them.

Aside from some small amount of support from her very busy case worker, unfortunately my daughter doesn't want/seek any intervention or will only allow a minimum of help with issues and important things - though she's more than happy enough to let me do nearly all the work for maintaining daily life (something I'm no longer accepting and is part of the adulting processes I'm slowly introducing again).
She's a mistress of minimising nearly everything, and convincing others that this is also the case, and has significantly mastered the Jedi mind trick "nothing to see here" :), which she actually has me believing at times, despite all the experience I have to the contrary - at least until the next round of medication or other cyclical problems.

I suspect her high intelligence is actually a trap for her. Most of the interventions I made over the years have had a contrary outcome.

Yes, her cognitive skills, whenever she shows them, astound me and others when in our company, however her connotative skills: initiating and completion are rarely if ever demonstrated, she's great at in-the-moment problem solving, until she hits an obstacle, when it just stops. So, yes, drive and organisation are seriously challenging for her.
I'm aware of a range of these things having been an educator, still I'd love to hear suggestions on how to work with these issues.

Thanks again.

thanks for the question @Gwynn

I've tried many approaches to asking the question of what she wants from life, and suggesting she sees an OT, even suggesting she gets her support worker to organise something like this. They are met with shrugs, passivity, and no action on her part at all. I suspect she thinks that getting NDIS funding will help get some of this to happen, though I am none to sure.
A very recent example: after 4 weeks of not moving on her NDIS application - it had all be signed, sealed, with letters of support - and regular gentle and increasingly less than gentle prompting to submit it, I did force the issue a few days ago, and with her permission submitted it in her name.
Anything that could be done fairly speedily (from my point of view) gets caught up in having some obstacle that distracts her attention (in this case she suggested, after the fact, that she was caught on what to write in the cover email) and she goes back to reading. I had asked her many times about what was getting in the way of doing it.
She's been falling through the cracks for years in terms of any interventions that might support her more quickly.
Often, if I start pressing too hard, she enters some sort of collapse state where she's unable to speak, and her eyes look like 'a deer in headlights'. I've also seen her go limp under these circumstances. At those points I leave her alone for a while and she come out of it. This is a big improvement since she does come out of it fairly quickly now, in the past it could take hours to a day or two.

My understanding of Polyvagal Theory is that these are the manifestations of being in a fold or collapse state.

My daughter has been helped by her mental health social worker, or the documents are unlikely to ever have been completed. The 4-week delay has been with actually submitting what her caseworker organised for her to the NDIA. Now that it has been submitted I can only hope she is given some support with her challenges.
Yes, her Window of Tolerance is tiny. Using that framework, she's substantially hypo-aroused, while I'm more likely to be hyper-aroused. A challenging combination, especially since we're both diagnosed as having ADHD, and self-regulation is a big issue. I'm acutely aware of how small our "system" is, how dependent on me she is, and have an inkling of how the influencing process between us works.
The main reason I've been holding my end together and this hasn't become a major struggle and mess, for both of us, was discovering the seam of information about Polyvagal Theory and associated outcomes of its applications in 2016. I've read up on this area and have done some NICABM courses to help me make sense of what's happening both to my daughter and myself and our interaction. Dan Siegel contributes to NICABM courses. It's all been a massive help with my self-regulation (except when I get overloaded, as is happening now with new pressures on our long-term accommodation and a need to create more income).
I've worked for years to widen my Window, both before and after finding the information about it. I've been encouraging my daughter to do so also. However she largely ignores things I offer to help, and if she does try them out, they often have a contrary outcome. When I do manage to explore this with her (on rare occasions) it often seems to be due to doing it alone and unassisted and only taking on part of the information offered.
Thanks heaps, your comments have offered more food for thought. I have substantially reduced what I offer as possible ways that might help. I'm wondering if some of the contrary outcomes are somehow associated with functioning at different ends of the Window of Tolerance.

@Gwynn

How has this week been for you @metamorphosis ?

Thinking of you and your daughter,

tyme

thanks for your question and link @Gwynn

Yes, I have a whole range of self-soothing strategies, music, dancing, sewing, cooking, using a deep Voooom sound, deep yawning, radical acceptance practices, a hand on my heart, drinking green tea using GABA, and several others, and learning more all the time. I learned to be comfortable about being uncomfortable, tolerate distress, half a lifetime ago. Since becoming informed about Polyvagal Theory and its implications for how we live, I've learned tools for and actively monitor my stress/anxiety/ lack of safety levels as much as my self-awareness enables, though miss doing so from time to time, naturally enough.
my daughter's strategies are less developed (from my point of view), and are largely avoidance-based (one of her diagnoses). Her main strategy is reading fantasy fiction (mainly, though she has a wealth of general knowledge so she's also reading other material), on her phone while lying down in bed. I interpret this as a self-numbing strategy, rather than soothing.
One of hers was smoking, though she has stopped doing that since early Feb (though still using nicotine). Although she often spent a long time in bed before quitting smoking, she now spends even more time doing so. At one stage she would alternate lying reading with sitting and playing some computer games, but her computer has been broken since early this year. While she has the ability to build a new one, and she did start this, something is wrong with one of the components she purchased and she hasn't worked on getting that sorted in the last 2 months.
Very occasionally she puts on a ring she can touch and twist. She has been taught EMDR, though rarely uses that. I've tried raising the idea of being comfortable about being uncomfortable, though haven't found a way to show how this is possible. When I mention various strategies and she can't see how they would work, she dismisses it as woo woo.
We have come to a substantial accommodation around self-regulation, and she sometimes suggests things that she believes would soothe me when I reach my limits about her inability to act on important tasks, like submitting NDIS paperwork. She perceives as me becoming triggered.
The biggest issues for me are her increasingly poor health, increasing tiredness after very little activity, and only becoming a little active if I take the initiative to make it possible, and then only sometimes. I have this strong sense that she's winding down. My deep concern is that she's on her way to becoming bed-ridden and worse.

Thanks for asking @tyme
The week has been challenging. I'm becoming more emphatic about my own limits, and stating these, rather than couching my comments in terms of what I think might help her. I think being clearer that some of what's happening is about me and what I can tolerate is helping a bit.
My limit is that I'm not supporting my daughter to become bed-ridden. If that is what she will pursue, then she needs to start sorting out supported accommodation.