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.

OP’s daughter has a diagnosis of ASD sure but maybe advice from some other perspectives could still be useful given that the current ways of managing are not productive.

Yes, maybe, though I think when the person commenting knows something about asd it’s more helpful tbh. For example there was surprise and disbelief from posters upthread when they were told that people with asd who do not have an intellectual disability can still have interoceptive difficulties. And those difficulties may not be relevant in this case, but as a general point I don’t see how that particular type of perspective helps. Challenging OP/DD is fine, but it helps when there’s an understanding of the possible issues being faced too.

You go from saying she’s making granola and yoghurt with berries and sandwiches and can use the microwave to saying she’s so bad at decisions she can’t even decide when to eat a meal by herself.

@Smoosha this is an excellent point, thank you. I’m an idiot.

I think in DD’s head she feels she CAN sort her own breakfast/lunch and decide what to have and when to have it. But dinner is a different ball game because
a) it’s a hot meal involving cooking, and b) I generally make a family dinner. I work fewer hours than dh (although he does sometimes cook too) and dd1 and dd2 are both working hard at their jobs and often get home late.

I’ve into a bad habit of replying to dd3 when she asks me what time she should eat by saying 7pm or whatever. I need to stop this and tell her to eat when she’s hungry.

I think trying to unpick how much is down to you doing everything and how much down to autism is a good start? Because she’s more or less housebound I suspect you’ve not moved on from her being in her bedroom and you shouting her dinner is ready like she’s 12. Whereas normally older teens start to come and go in evenings with friends and hobbies and naturally need to start making own food.

How did she get on at school cooking etc. Did she go to Guides? We cook quite often eg I did a ready steady cook challenge with my guides (10-13) it was a challenge with a limited range of ingredients and different cooking appliances and they produced some great meals - winner was a noodles dish with egg but they all produced edible meals. Sort of thing they could eat at uni. I’d expect a child to be able to make simple hot meals from late tweens/early teens. It is unusual you’ve never expected her to make a hot meal especially if you are working and she’s home. It’s also unusual she’s never offered to make you food eg if my dd is making a Caesar salad or avocado/poached egg on toast for lunch and I’m working at home she’d offer and make me same.
My dd is 20 with a significant physical disability. She finds an airfryer easier - is that something to explore.
It would have been very easy with my dd to fall into trap of doing it for her but she needs to be independent (she lives away at uni). She also has pretty restricted eating, yoghurt bowls, bagels are very much staples in her life, there’s nothing wrong with repetition. I do enjoy cooking for her when she’s home eg a Sunday roast but most of time she sorts herself out.

What would she do/ say if you said: "I'm struggling to finish up at work. There are pizzas in the fridge. Can you help by popping them in at 6pm, 180c for 12 mins?"

The but in this OP about a 14 year old “he might choose not to but he won’t starve”.

Thats the answer.

Your DD3 will be 20 years of age by the time you go away. It’s not akin to some kind of American horror story where a toddler is left abandoned in a cot. She is neither physically or mentally impaired. She will not starve.

Leave the food & leave it at that.

And if she can babysit she clearly can do quite a lot when she needs to. But that can disappear when mummy is there to indulge her helplessness & guilt trips.

And draw a line under text conversations about food.

Yes really.
Some autistic people do not feel hunger due to differences in interoception, the internal sensory system that detects physical signals like hunger, thirst, and satiety. This can cause them to miss, misinterpret, or only feel extreme hunger cues, leading to forgotten meals, reduced appetite, or a reliance on external reminders to eat.

My dd is very clever, intelligent, has no learning disability (the opposite in fact). She is what they call ‘high functioning’. In reality that only means she has autism with no learning disability. She can’t make decisions, doesn’t feel hunger, can’t socialise, can’t go out alone, can’t speak to doctors and other professionals .. the list goes on.

But can your daughter babysit? That's what gets me - either the OP's DD is able to look after young children, in which case she must be able to look after herself. Or DD is unable to make decisions or even feed herself, in which case no one should be leaving her alone with a child.

The trouble is that some people with ASC diagnosis do have these severe difficulties with interoception, but other people with ASCs have different problems with interoception, and still others have no significant problems with interoception at all. So parents get hit with all these different possibilities when they find out about autism. But only a very few of these possiblities (if any at all!) will be investigated during diagnosis. So even after the diagnosis, and after all the investigations that lead up to a diagnosis, we can still be left with massive uncertainty about what our child can and can't do. And sometimes the only way to find out what our child can do is "try it and see".

OP as parents we are bound to make mistakes. It is important to forgive yourself, and especially to not get bogged down into "OMG I did that wrong, it would all have been different for DD if only I'd done something a bit different". Honestly, it probably wouldn't have made a difference. She is as she is. What she can do is what she can do.

I do think a lot of the things your DD tells you about herself are her trying to make sense of emotions she doesn't understand and even using words that she doesn't really understand. She is using them in that definite black and white "this is so" kind of way that "tricks" you into believing that her words represent her deepest feelings but they might not. All her words might boil down to "getting that diagnosis didn't make me feel happy". She might even have picked up some of her way of thinking about herself and trying to blame her problems on the choices that you made, from the simple fact that you agree and blame yourself! Don't take what she says about her feelings too literally. Some people are just no good at introspection either.

I honestly can see both sides. I can see how OP’s dd can look after kids and tend to their needs. I imagine her brain can easily focus on what the kid needs, without associating it to “oh I need that too”. However, I do feel overall that OP’s DD is manipulating and calculating wrt her mum. OP enables her dd’s behaviour. There’s too much running around like a headless chicken analysing and scrutinising everything.

Someone with autism might attempt something they really can't or shouldn't do - I don't know the ins and outs of the baby sitting, but I have two adult daughters with autism and they both overcestimate their abilities in some areas - and then people get upset when it all goes spectacularly wrong.

So I wouldn't put too much store by this babysitting business.

PIP, for example, is based on what you CAN'T do - it takes no notice of what you CAN do, which is why people can work and still be entitled to it. All this "she looks after children so she must be able to cook a meal and go to university" are missing the point.

OP’s daughter goes to theatre without Op, can navigate public transport in London alone, babysit children. Op leaves her alone all day whilst she’s at work and she eats and drinks, Op has left her alone for weekends when she’s been away with husband. It’s not case she requires a full time carer.
If the DD won’t eat any hot food while Op is away then no harm will come to her.

But the OP was happy to let DD3 babysit and nothing did go drastically wrong.

I don’t think many people are saying she can go to university because she can babysit. Nor are people even saying she can cook but she can clearly survive without having to text the Op about every food choice.

DD3 comes across here as someone with a not insignificant ego who thinks she is capable of quite a lot. She is quite scornful of what she believes is beneath her. But so long as she keeps the Op tied up in these endless pointless conversations she doesn’t have to move forward and therefore she can’t fail. Because maybe she’s afraid that she won’t live up to the high standard she feels she is worthy of. And the idea of that is too much.

I’m not saying otherwise. I’m simply trying to thelp others understand that not feeling hunger and therefore not eating, is common with many autistic people, because some posters were in disbelief about this.

Again, my thoughts are that the dd here is playing the OP to huge scales. OP needs to toughen up and make dd behave like the adult she knows she can be.

I think both can be true at the same time.

Both of what? That you can be cocky and autistic? I agree. But what does it change?

DD3 still needs to get on with it.

It's not so important now but your brain can recover from 'trauma' . That said, I wouldn't discuss it with her now.

OP i have a daughter with autism, adhd and eupd. She is extremely avoidant, anxious and also talks a big talk about her abilities. I think it's quite common with autistic young women.

It’s a new week @bendmeoverbackwards how are things with DD?

Thanks for asking. Dh and I have since had another session with the therapist and we discussed the money situation. She asked us what is the aim of stopping DD’s allowance? The answer to that is so she will get a job/start supporting herself financially/get out the house a bit more. But will having no money make her do these things? Suppose she doesn’t and she continues as she is, doing nothing but with no money?

I’d be interested in people’s thoughts about this.

Well then she will have made a choice. She’s an adult and she can choose to live like that. But you would no longer be the enabler. And that is also an important aim; for you to stop enabling inappropriate behaviour.

Also I suspect your daughter will change her behaviour because she enjoys the things that her allowance buys her so she will miss them when they are not there. It may take some time though. She will need to live through the ‘pain’ of poverty.

keep going

Then she has no money??
what a strange question. This is a fairly basic parenting of teens principle. They will take and take financially if you let them - teaching that money doesn't appear for nothing and they have to work for things they want is a key part of parenting. You've failed to do that so far, and you're enabling her to remain stuck by bankrolling her. If you don't make things a little uncomfortable she'll never have any motivation to change!

If she continues as she is with no money then you may eventually need to employ stronger tactics to get her to do something, but either way at least you'll have started to introduce her to the idea that in order to have luxuries you need to work for them.

Have to say, ‘rewards’, eg the money, are irrelevant to my DS who has autism (no intellectual disability) so the strategy of removing money wouldn’t work.
But everyone is different.
Did reward charts work for her as a child OP?

Either cut off her allowance or plan to finance her for the rest of her life (money now and later enough of an inheritance to live on when you're gone).

I think the second option is madness, enabling bad behaviour and a complete avoidance of reality. But obviously it's your choice.

However, I do think it would be more productive talking to your therapist about things you want to achieve for yourself, not just for your daughter.

Do you want to be able to not cook for a week and not worry about your daughter starving? (she won't). Do you want to be able to save your own hard-earned money? Maybe retire early or go on a nice holiday? Do you want to be able to travel without worrying about your DD? Do you want to focus on yourself and your DH for the first time in decades?

For any of those things to be possible, your pattern of behaviour with your DD has to change.

Given everything you've said about your dd, then i think it's a real possibility that it won't motivate her in the way that you hope, and that others here are sure it will.

Do you have a plan for if, as you say, she continues to do nothing, but with no money? Are you prepared for her world to shrink further and for her never to leave the house? Genuine question - are you prepared for that? Because I think you've got to be realistic that it is a possibility. And I think you need to plan on a worst case (rock bottom) basis.