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 not hearing a lot of constructive suggestions from people who feel this is all ASD related and a ‘different’ approach is needed as to what that approach actually would be.

I don't think that's true. The problem is that you cannot lead the op step by step through a staged plan (which is likely to be a complex one) that might work using an online forum, not knowing the op's dd, nor whether op has consistently applied what might actually be the correct strategies in the past.

I've suggested utilising special interests (animals) as a hook and building up from there (to volunteering), incrementally. I've said that big changes involving volunteering or university are more likely to work by taking tiny steps towards those things, and suggested a staged way of doing that.

I've posted links to resources that have worked for many others, and many professionals are increasingly utilising, with demonstrable success. Has she tried low demand for 3 years without success, or has she tried her version of low demand which has resulted in no success?

I've tried to find out more about op's dd's likely responses in specific scenarios (such as providing very short, specific instructions relating to cooking a quick and easy family meal, like bunging pizzas in an oven) to understand more about the level of capacity, skill and motivation her dd actually has/ needs in a simple real world scenario.

And I've talked about anxiety medication (linking her engagement to something that intrinsically motivates her) to reduce the baseline enough to enable her to engage in proper therapy, supported by professionals.

The thing is, when parents of autistic children/ teens with lived experience suggest things that have worked for them, they're often told they're projecting, or met with disbelief that their approach has in fact worked, or that "well, that might work for your 9yo but we're talking about an adult here". Or, worse, told that their contributions are unhelpful and enabling, because the majority has decided that the op's daughter is choosing to behave this way, and so the usual behaviour management strategies apply.

I agree wholeheartedly that something has to change in op's approach and it's absolutely worth trying the things others have suggested on the basis that something else might be going on, besides the autism. But I'd like op to keep in mind the possibility that her daughter's world may shrink, rather than open up, to be prepared for that happening and to have a plan for if that happens. Because nothing cuts deeper than thinking/ knowing you've tried everything and run out of road. I'm thinking of the op's own mental health here.

@Whatafustercluck the part about have you done low demand properly or your version of low demand is playing on OP’s worse fears and putting an unfair burden on her.
She’s taken advice from a specialist parents Facebook forum and paid trained therapists/counsellors and done what she’s thought best. It’s not on Op to ‘fix’ her.
How would it work practically? Op watches her DD’s animal tik tok memes and responds. She’s suggested volunteering opportunities/willing to facilitate eg lifts but she says outright no. She’s been patient for almost 3 years. I can’t see what more practically op can do to move her adult dd from watching cat memes to volunteering at local cattery for example.

Surely you can see what a big jump it is to go from watching cat videos to volunteering. There's a whole load of steps in between. How about:

"Hey, I noticed you like cats/ animals. Me too. There's an animal shelter open day on Saturday I was thinking of going to. Want to come with me?"

While there:

"I notice you really like watching animal videos. Have you tried making your own?"

Then:

"That animal video you did was great. With editing, I wonder if the shelter could use it in their marketing."

Over time repeat with added step. Next, op could get talking to a volunteer while there about the animals, the work, how much they enjoy it etc.

Natural progression over time, builds capacity and confidence slowly, safely, incrementally, maintains autonomy, and eventually gets to a point where it becomes more regular, structured.

Hey. I see you like animal videos. Do you want to come to a shelter open day?

No.

Then what?

Hey. I see you like animal videos. Do you want to come to a shelter open day?
No.
Then what?

This is what generally happens. I’ve got a list as long as my arm of suggestions people have made for things for dd to try. I’m pretty sure she automatically rejects anything I suggest. Some of the things she has done lately SHE has initiated, eg baking me a cake, buying herself a cheap theatre ticket and taking herself off into town.

Ah right I think I'd missed your DD's interest in animals. Yes that could be a hook to getting her to engage with the outside world.

There is a lot of wiggle room between "university this September" and "still in her room in 30 years time". This is a long game and success may be measured in very small steps, and not every step will be a step forward but after a few months you should be able to see if you are further forward even if not in the direction you had first planned! I don't think you need to have a fully worked out plan for all the "what ifs" right now. Most of us parents try things and wobble around and we do make mistakes and correct them. And sometimes our kids surpirse us, like DD did with baking.

It could be that she'd benefit from more time building herself up slowly and doing some other things so that "getting into a (good) university" doesn't feel like the be-all and end-all. Yes universities have support but it's patchy and imperfect. There are several universities near me (I work for one) and it's the ex-poly that has the best student support. University may not even be on her path in the end, who knows?

Perhaps DD hasn't researched universities because she doesn't really know what she wants or accept what she needs yet. Perhaps some conversations with her that step back from just "do your research" and help her to understand and articulate what she wants? Or break the research task down to ask more specific questions - have you found some universities that offer your subjects (does she know what subject she wants to take)? Do you want a university near here or far away? In a big city or somewhere quiet? And start with these objective questions before opening up any of the more sensitive ones.

Either way you shouldn't be pressuring yourself into getting DD into university or fulltime work this year and judging yourself a failure if she doesn't. Maybe DD can do that, great if so, but maybe not, there is plenty of time. DD's not been long diagnosed, you're still figuring stuff out. The balance between managing DD's disabilities versus enabling her self-destructive thought patterns is a very tough one to get right. As long as she is making some steps in the right direction and not just going downhill that's OK.

@AmaryllisNightAndDay thank you. For the past few years I’ve started to dread this time of year coming to the end of another academic year and looking to September because it’s probably yet another year that dd doesn’t progress. Even thinking about my own plans for the autumn makes me think ‘I wonder where dd will be then?’. Maybe I should stop thinking in terms of the academic year. I know from my friend whose daughter was in a similar position said things happened for her dd when she least expected it and took her eye off the ball.

I said you can't create a step by step plan without knowing op's daughter, so used this as an example of how you could use special interests as a hook into a series of much smaller steps with a bigger goal at the end (since it's been suggested that parents of asd children haven't contributed any proactive ideas to the thread). In this precise scenario I'd probably say "no problem, I'm still planning to go if you change your mind. If not I'll send you some photos". She might change her mind and come. She might not, in which case I'd do as i said and repeat again the following week or whatever. In how I've phrased my example, the focus is on me (I'm doing this, do you want to join me) not her (you like animals so do you want to go to an animal shelter). A small but important shift that prevents a demand>anxiety spike.

Of course she could just say 'no'. But she could just as likely say "I don't give a fuck if you take my allowance away, I'm still not doing what you tell me", couldn't she?

Or perhaps since she like control and doing things for herself it's best not to ask her about university at all!

For the animal shelter, I might try phrasing it more emotionally and making it about you not her. After alll she made the cake to please you. "I'd like to visit the animal shelter and see the animals, I'd love it if you came with me". It's not about the end point (volunteering) it's also about a day out together and expanding her world a little, those would be little successes in themselves. And give her time and don't take an initial "no" as the final word. "I'm going, will you come too" and no upset if she says no, you can ask again later. I also used to find "I'm not asking you to decide now but tell me on Friday" was a good strategy to avoid the instinctive "no". And a time-delay choice "we could go tomorrow or in two weeks" was surprisingly effective (although these things are very individual)

Yes exactly. Academic year is basically irrelevant. She’s such a long way off at the moment. But when things change I think they’ll change quickly.

I would suggest trying to have an alternative list of achievements at a much lower level, like “cooks a meal
without help”, “has/ hobby interest outside house”, “is nice to father consistently”
or “doesn’t mention mental health/ trauma/ diagnosis for 3 days”. You know better what this might look like, but at a much lower level. It’s like building blocks- the lower levels need to be sound before you can go any higher.

What have you decided to do about the allowance?

OP, it does sound like she'd reject any suggestion from you.

Who else could make them?

Siblings, her dad, family friends?

My DD's often surprised me by what she's willing to do at our next door neighbour's. She really likes her. I've managed to convince her to do things a few times by just doing the thing myself like a pp said.

No point my telling her to practice her singing pieces. But if I sing myself she may join in.

Don't make any suggestions at all for a month. See if it helps.

She already babysits, so I'm not sure it's that big a step! Looking after children is more responsibility than looking after cats.

Yes, I agree - the key is in how you phrase it and realising that a 'no' when it's sprung cold doesn't mean a 'no, not at all'. The things you've mentioned have worked for us, too.

And I agree also that I wouldn't be constantly asking her about uni. I wouldn't be engaging in conversation about that at all right now.

Really? You can't see that a time limited, one-off, playing with a child/ children (who generally have fewer expectations and less judgement) is very different to a long term, regular commitment that involves planning, organisation, and regular, frequent adult-to-adult social skills? Babysitting is pretty low demand if you view it in this context.

A regular volunteering slot is another step in the right direction. Babysitting is usually a one-off, volunteering is another form of responsibility and consistency plus it gets DD out of the house and doing something positive with unfamiliar adults during the daytime. From where she's been for the last couple years that would be a helpful step.

I was under the impression that she does paid babysitting regularly. Volunteering in an animal sanctuary doesn't need to involve a lot of pressure, when I used to volunteer at our local one a few years ago we had 3 autistic young people regularly volunteering there. Two of them had significant learning disabilities as well as autism and had attended a special school, the other had significant mental health issues as well as autism. It was a very low pressure environment and it seemed to suit them all well.

I could be wrong, but I took Cadmium's post to mean that if she's already babysitting then she must also be able to volunteer, but is probably choosing not to (behaviour, not ability).

OP you are altogether too worried about whether a new approach will go wrong or backfire.

The situation has already gone badly wrong with the way you have patented your DD the last few years, and still you seem honestly frightened to make anything other than very tiny changes like asking your DD if she has done any uni research.

Seriously grow a backbone, and tell her if she wants to continue receiving her allowance here's a list of thing she can do to earn it.
Start with basics like getting up and dressed by 9am, contributing to simple chores around the house like loading and unloading the dishwasher or washing up, tidying and cleaning her bedroom, and doing some research /planning into what she wants to do in terms of education training or employment.
Most of this list with the exception of the final one are chores my 10yr old is expected to do for £10 per month. I suspect you are giving your DD far more than that for doing absolutely nothing.

Some of it depends on what is a "big" versus "small" step for DD. It's about looking at what she has been doing and hasn't yet done and then thinking "OK what's the next step from here that will expand her skills and her mindset in a way she can handle?" Filling in the gaps is important because abilities in autism are so variable and so spotty, extreme strengths and weaknesses side by side. What looks like a small extension of something she has already done may turn out to need a whole new skillset.

Volunteering may not have to involve much pressure and that's the point, I would expect DD would be capable of more responsibilities than some young volunteers with disabilities, and I also expect that if she's obviously coping then they would start to ask more of her and offer more responsibility. For DD just trying something quite new and succeeding at it may be a big boost.

"Can" versus "will" can be hard to tease apart. If you're deeply resistant (scared) of trying anything new (or anything that you think is below the expectations you have set for yourself but don't know how to meet!) then is that a "can't" or a "wont"? Either way it's a matter of finding the best way (or any way really!) past that initial resistance. Decreasing the comfort of being stuck in her room and giving accessible (undemanding!) opportunities to grow seem like two sides of the same coin.

Does she like travelling OP? Might she consider a youth project abroad?

Plenty of young people with autism are capable of regular volunteering (and full time work!). Many will not be - either ever, or not without a properly scaffolded approach to overcoming the incremental steps necessary to take someone from 'copes within certain environments they control' to 'able to cope in an environment in which they have much less control and demands are variable'. I'm sure you've heard the saying that if you've met one autistic person, then you've met one autistic person. Once she's there, op's dd may thrive like the autistic people you've referenced do. But at the moment, the problem is getting her to that stage. And her view of 'pressure' will likely look and feel very different to yours.

I can’t think of many jobs where you have less control and greater variable demands than looking after young children which @bendmeoverbackwards daughter has proven herself more than capable of doing.

From your post: DD's not been long diagnosed, you're still figuring stuff out.

I believe the OP's DD received her diagnosis eight years ago, at the age of 11.

@bendmeoverbackwards you have already seen that your DD has responded to removing her allowance by completing some chores. That is one hopeful sign that she does care about this consequence and is willing to put in some effort. I would definitely build on that.

I would imagine that your DD is fairly miserable, since she must know she is stuck and achieving nothing. Her life feels comfortable to her, but at some level she probably knows how unhealthy it is. Lashing out and blaming you takes the pressure off herself. I do think that you and your DH need to be the ones to help her move forward, as she doesn't seem willing or able to do so on her own.

I can see some benefits to a low demand approach. Methods like indirect communication can be useful in many situations with NT as well as ND people. But as PPs on this thread have pointed out, low demand doesn't mean no demand. Your DD is an adult, a member of the family, an individual within a household. It's perfectly reasonable to expect her to fulfill some responsibilities for those reasons alone.

Hope you’ve had a good bank holiday @bendmeoverbackwards. Does your dd make any plans or is she just at home waiting for you to suggest things.

Mostly the latter. But Dh and I make plans and then sometimes invite her. We went to the cinema with her on Saturday and out for tea yesterday. She also joined me on a walk.

Dh and I have now decided to reduce her allowance by £20/month over the next 4 months. Dh is going to communicate this with her soon. She won’t like him telling her instead of me but that’s tough. I’m reminding Dh to tell her things that I would normally do so he’s more present. She made a fuss that he told her to put the shopping away as that’s something I would normally do but we’re not bowing to her wishes any more; she has 2 parents.