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.

Gosh I’m sure you should be able to go away without worry by November 2027. She’ll be 20 by then right? I hope things have changed a lot for the better by then.

Someone of your daughter’s age would have to be profoundly cognitively impaired not to be able to make some simple food for herself without reminders. This is incompatible with her being able to make a cake, babysit, go to meals and on public transport etc. QED She is choosing not to do these things because she doesn’t have to and you have always done it. She really doesn’t need you to tell her when to eat. If she ever asks that again just say ‘it’s up to you. When you feel hungry’

My 19 year old I expect to sort herself out entirely if we are not here. Plan and cook a meal, wash up etc etc. My 14 year old I would leave something to heat up and remind him it’s there. He can do easy pasta, pizza, beans or cheese on toast stuff for himself. He might choose not to bother but that’s up to him he won’t starve. I don’t check up on him.

I don’t do breakfast or lunch for either of them. I leave them to get what they want when they want for those. I enjoy cooking and I do like to feed my kids so I make family evening meals for all who want them and I try to get DS to join in so I can teach him stuff. They are both expected to help set and clear the table and do the dishes.

If you want to progress to more independence just leave the food and not the detailed instructions. Let her get her own breakfast and lunch routinely (surely she does when you are at work?) If she misses a few meals it’s not the end of the world and you can still care for her by making family evening meals.

I think ‘can’t’ must mean ‘can’t make a decision’ or ‘feel anxious about’ rather than physically or cognitively having no ability to carry out the task. The checking in and you reassuring her are definitely reinforcing her worry and dependence as it gives a message to her that indeed she ‘can’t’ and needs you to help. If you step back and let her figure stuff out she will get more confidence to do this stuff herself. Try not answering all the reassurance seeking questions or turning it back ‘what do you think DD?’

It seems like this is a very pervasive pattern that you are not aware of how odd it seems to others. Honestly most people are not in such constant contact with teen DC or micromanaging them so much. My DD is on her phone a lot messaging people but never me!

You are missing “ask Co-pilot/Char GPT” any AI resource

Some posters here don’t understand how autism can affect your ability to eat and drink. For many, my dd included, they simply don’t feel hungry or thirsty, or don’t recognise the signs of being hungry or thirsty. My DD sets alarms to tell her when to eat. If she didn’t do this, she really wouldn’t eat! So actually yes, she could literally starve to death, if left to her own devices.

Really? Seriously? With no intellectual disability?
I guess you would know and I wouldn’t as I freely admit I have not tried to parent an NT child but it seems to fly in the face of basic biology. Animals and babies know when they need to eat and drink it’s such a basic function of all organisms. You’d have thought evolutionary pressure would select against being unable to feed yourself and it clearly hasn’t.

But nothing the OP has said has implied this is the case with the OPs daughter. She apparently happily makes herself sandwiches and yogurt with berries. The OP hasn’t confirmed whether or not she needs instructions to do these things. She only said it’s meals that need heated up that she needs strict instructions for. The OP has said her daughter has absolutely no intellectual disability. She cares for small children totally by herself. Goes out with friends. I honestly think something like never being able to feel hungry would have been flagged up years ago. It could be answered easily by the OP anyway. I’m sure at some point get daughter will have come to her with the standard “muuuuuummmm I’m hunnnngrryyyyy” at some point in 19 years as lots of kids do.

Interoception, or how someone perceives bodily signals, is often different in autistic people.
My autistic DS sometimes has to be reminded to go to the bathroom as quite often he won’t realise he needs to go until he’s desperate! He’s an adult btw with no intellectual disability.

But he doesn’t as an adult wet himself in public right?

I mean I can believe that this is more of a struggle/ less intuitive than for NT people but it just means you need to learn coping strategies like the DD with the alarms.

You would not in fact starve to death or wet yourself in public as an adult high functioning intellectually normal person with autism surely would you like someone with a profound intellectual disability might?

It seems like a need that someone would need to learn coping strategies around but not one which would predicate them being unable to live independently of their parents at any point.

That's fine, then The OPs DD can learn to eat at e.g 8am, 1pm and 7pm every day. It's not a reason to ask her mum when to eat every day

Unfortunately DS is quite unlikely to live independently. Intellectual ability isn’t everything when it comes to autism. Support needs can still be high.

So you wouldn’t let him look after small children by himself I’m guessing if that’s the case? Unlike the OPs daughter who happily does that?

Autistic people can have a ‘spiky’ profile of abilities is the point and they can vary over time too. Depends on the person of course. I can’t say what OP’s DD is capable of or not, and nor can you.

DS is very good with young children as it happens, but he doesn’t babysit or anything like that.

That’s fine. But the point is if someone is unable to live independently, which surely means they cannot look after themselves to a reasonable ability, then it would be a bit strange that they could look after small children totally fine. The OPs daughter can look after children by herself. The OP thinks she can go to uni. But apparently would starve to death if not told to eat.

Mental health issues are also real. I think it is dodgy territory to tell someone their daughter is "fine" because she can do this or that - it isn't that simple. My nephew has severe mental health problems and can't get out of bed some days. He wasn't diagnosed at 18 but the signs were there. I am not saying the OP's daughter does have mental health problems, but you can see how people can make assumptions about others based on an incomplete understanding of the issues they face.

I don’t the OP said she’d starve to death? Or maybe I missed it. I read that she had issues around food, cooking (usually) and also issues with decision making around when to eat and so on…that there was work to do.

Of course OP is going to be concerned about this and how to manage it if she’s apart from DD.

No the OP said she needs to leave strict instructions for heating up food when she’s away. Including what time to do it. Apparently the daughter is so terrible at decision making and can’t even decide when she should eat. That led to people saying well it’s a thing with some autistic people that they don’t feel hunger or thirst etc and would indeed starve to death and it’s escalated from there.

In reality, it’s unlikely the OPs daughter does not feel hunger. But equally, if she is in fact so terrible at making decisions, should she really be looking after small children by herself.

This, how could she safely ensure the children are fed if she has to be told to eat and have food made?

Presumably she is told when & what to feed the children. I wonder why people who have such a little understanding of ASD feel they can comment on this scenario.

And do others need to contingency plan for her too?

Stop asking her. Stop trying to micromanage her day, her feelings, her plans. Make it uncomfortable for her to continue as she is. That means the allowance STOPS. No discussion with her about how much she needs etc. I am not saying do it overnight, but give her a month's notice and tell her that's how long it takes to get universal credit in payment. She will spend less time scrolling TikTok if she's go no money to spend on TikTok shop. She'll spend less time navel gazing if she's broke. You need to start grey rocking the refrain about not being nice. But that means you remove the trigger by not repeatedly asking her about university. It's pointless anyway since you know she's not going to get there. She should be aiming for a part time entry level job, which would teach her invaluable life skills, but she believes she's above that and you're enabling that by giving her free money.

Looking after children isn’t just about feeding them though is it? Anything could happen and you need to be confident at making a decision at the time that’s needed. If her issues were ONLY around food then yes it’s understandable. But it’s not. These entire two threads are about the daughter’s troubles.

FYI, I’m autistic. Diagnosed in my 30s. Does that mean I’m an expert on every autistic person? Of course not. Everyone is different. But what makes it acceptable for someone to comment and share an opinion?

The more you keep researching options for her, the less motivation she will have to do anything for herself. She has learnt 'mum will do it' and you always do. Time to stop.

If she does have a serious mental illness (nothing OP describes suggests she does) then pandering to her is still not helpful as it simply perpetuates the dynamic she lives with and prevents her from being motivated to seek support.

OP, her DD and her whole family are in a situation that is unhappy and needs to change. Thats why people have been posting with advice on how it might be changed. 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. If you post on a general parenting site you will get a variety of perspectives that you need to sift through.

We none of us know exactly what OPs daughters profile or needs are but there is at least the possibility that over accommodating has left her in a situation of dependency that is making everyone unhappy.

It is unsustainable to simultaneously require your mum to tell you what and when to eat and also to aspire to do a degree at a ‘non shit’ university. One or other (and probably both) of those things needs to change the capability or the aspiration.

So..your daughter has an allowance (she won't claim UC), she goes out with her friends but won't work or volunteer. She is happy to bake a cake but won't/can't cook simple meals. She wants uni but doesn't have a level 3 qual and doesn't want to go to a "shit' uni - OP I think earlier you suggested hese were once called polytechics...

Dd definitely feels hunger. Sometimes when she comes down to dinner she says she’s really hungry.

For breakfast and lunch, I leave her to it. She makes her own, I have no idea what time because I’m usually out at work and I don’t tell her what to have or give her ideas. So she’s capable of choosing what to eat from what we have in the house.