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.

Personally I would say if she’s that bad that she is prepared to live without any money at all and never leave the house, the OP needs to start applying for outside help on her daughter’s behalf. Because she can’t just shrug and say oh well in that case I’ll just give her money for the rest of her life. The fact is the OP won’t be around for ever. The daughter needs to be able to get money in the future. Whether that’s benefits or whatever. What if the OP becomes sick or disabled and can’t work herself? Benefits won’t cover both of them forever. She needs to prepare her daughter for life long term whether that’s working or benefits. Either way the allowance has to stop. She can claim benefits/PIP etc. She doesn’t get to just refuse. She’s an adult. She can’t expect to be supported by another adult.
The OP will also need to deal with long term housing. Yes it’s fine at the moment she has mum and dad there to “remind” her to eat hot meals. But if she’s so bad she can’t do that alone, then the OP needs to start looking at assisted living in the long term. Because again, what will the daughter do if/when mum and dad aren’t around anymore? Even IF the OP gives the daughter the entire house in her will, how is she funding it if she refuses benefits? How is she eating if she apparently can’t decide when to? Regardless, the current set up isn’t working. The money needs to be removed. It can either be replaced by working, or by benefits - whether applied for by the OP or her daughter.

Edited to add, I have a friend with a daughter with moderate learning difficulties. She can’t live alone. My friend is 60, her daughter 25. My friend is already researching and organising her daughter’s later life. Where she could live. What money she can have. Encouraging a network with other disabled families so she has friends. Attending social events for disabled people. She doesn’t just leave it and hope for the best. She’s well aware she will die/become unable to look after her daughter one day. And it’s better to get plans in place where possible earlier than later.

No-one knows if stopping your DD's allowance will lead to the positive results you are hoping for.
You'll only find out if you do it.

But it's almost 100% certain that if you don't try something new then nothing will change.

You've tried the softly softly approach for years with no success.
I understand why - fear of making the situation worse, and of suicide - but you have enabled your daughter to shrink her world to the point she now does almost nothing. Because she doesn't have to.

She is unlikely imo to suddenly decide one day to get a job/apply for a course unless she or something in her environment changes.

You can't force HER to change, but you CAN change her environment. She will then have to make a choice as to how she reacts to that change.

Earning her allowance (through completion of chores/applying for jobs/whatever you decide she should do) is a way of getting her to change. And it's perfectly normal to do it. Most kids have to do that anyway, as part of growing up!

If she still won't get a job, that's her choice, but she'll have no money. 🤷‍♀️

Then don’t phrase it as a reward. Say the money from mum and dad is stopping but if you WANT money you need to apply for benefits or get a job. The person then just chooses if they want money. And if they are happy living without money, then the parent must claim for them as they need money to live in the long term. Phrase it as a fact. Not a reward.

Sadly, the reality is that unless people in the op's situation have financial/ medical power of attorney (she doesn't), there's a massive cliff edge at 18. Op cannot deal with authorities on her dd's behalf, because I strongly suspect that her dd will refuse, just as she's refused to see medical professionals. That's worth working on of course, and might be possible. But by law, op's dd is an adult and op doesn't have formal arrangements in place to act on her behalf.

This is why I've said further up, in some of these cases parents have to be prepared for their dc to become homeless, jobless, penniless because they literally cannot be helped. It sounds bleak, and it is.

You can't force HER to change, but you CAN change her environment. She will then have to make a choice as to how she reacts to that change.

There’s a big chance no choice will be made. She will hugely resent OP for what she’s doing.
Agree the current situation needs to change. I’m just not sure stopping her allowance is the best approach.

When it comes to emotional maturity, kids with autism are typically several years behind their peers. People say ‘she’s an adult’ and has to be treated as such, and legally that is true of course. But from the point of view of her mental or emotional development she’s probably not there yet. She’s likely behind her peers in this sense. Not helpful I know, but it’s the way things are, usually.

In response to the therapist surely the aim is to treat her like an adult not a child getting pocket money at 19. For her to understand money doesn’t grow on trees and you need to support yourself or if you can’t due to disability to apply for welfare benefits.
Do you think therapist is trying to push a response from you. I have to say my reaction to that would be one aim is not to feel taken advantage of, I’m not working all day and paying her to laze around when she won’t even attempt to do small things like put shopping away.
The aim should be to make dd realise she can’t just carry on sponging off you.
You having the financial means to support her is allowing this situation to carry on and I’d wonder if me supporting her financially was doing more damage to her.
At least you’ll have taken a step forward and will know if no phone/wifi or money is a motivation factor. If she’s happy to sit and stare at the walls day after day then you know more than now about her mental state.
I personally suspect she’d have the wherewithal to buy an e sim so her tik tok addiction can continue, she appears perfectly capable of doing things if it suits her.

It sounds difficult for you to get to the bottom of your DDs capacities in different areas. As PPs have said, it’s a very ‘spiky’ profile if she can look after young kids but not eat dinner. I think lowering and then stopping the allowance may give you more information about what she is able to do as it provides an impetus to autonomous exploration and action. If she isn’t able to respond then it would be time to try something else.

@ProudWomanXX I’m so sorry to hear about the situation with your daughter, my heart goes out to you. What would you suggest doing to avoid this?

Did reward charts work for her as a child OP?

@Brightnessinside I honestly can’t remember. But more recently, when we withheld 25% of dd’s allowance until she did some chores, she did indeed step up (a little bit).

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?

@Thatsalineallright yes to all these things. And contrary to what may be coming across in my posts, we are starting to do this. Dh and I go away for weekends and short trips which we massively enjoy. We have full lives with our jobs, nights out, friends etc.

And if I’m honest, I want dd to get on life for my benefit too, however selfish that sounds.

Either cut off her allowance or plan to finance her for the rest of her life

Theres no way I want to finance her for ever more.

No-one knows if stopping your DD's allowance will lead to the positive results you are hoping for.
You'll only find out if you do it.

@Woodfiresareamazing2 This is a very good point. I’ve been so scared of getting things ‘wrong’. Both Dh and I think that we’re probably also autistic and I’m aware of my own tendency towards black/white thinking. But there are many shades of grey and not knowing if something will work should not be a barrier to trying.

Well, you know her best.
Just wanted you to be aware that the ‘this will sort her out’ cutting off the money approach may backfire.

What do you mean? How might it backfire?

I just meant make things worse as she won’t take it well.

Did the therapist ask this question in a "doubting that you are making the right decision" sort of way or a "getting you to clarify your thoughts and make sure you and DH are both on the same page" way?

I think stopping or really limiting her allowance is a good thing to try. She can have minimal supplies at home but she needs to "earn" everything else. Whether she earns it by signing on, or finding some occasional paid work like dog walking, or earn small amounts by doing chores at home, or getting herself into employment or education. Earning is actually very empowering.

Review after a few months. See what steps (if any) she has taken. If she can't do/hasn't done any of the things then try something else. Maybe you can return (some of) her allowance if she volunteers for example.

When I left school at 18 and didn't know where I was heading my Mum did me an enormous favour. She told me that if I wasn't in a job or education then I had to sign on. No allowances. (Times were easier then, you could leave school with fairly basic qualifications and even get a job you could afford to leave home on.) I resented it at the time but now I bless her for it.

Don't overthink it. If stopping her allowance backfires in any way at all you can try something else. But remember that she will probably be stroppy / difficlut / angry about it at first so give her time to settle in to the idea. A month's warning and then expect to soldier on for (say) six months before you change your approach (but I wouldn't tell her that as she'll start obsessing)

Well no she won’t but that doesn’t mean it’s the wrong thing to do.

Obviously she isn’t going to take it well. Who would like or enjoy having free money taken away? Doesn’t mean it isn’t the right thing to do though. One day the free money will stop either way. Who will she rant at if her parents are dead? It’s best to try and sort out now what she can do long term. If it turns out that that’s nothing at all, the OP will have a better case of getting her assisted living and benefits long term.

No, it doesn’t, you’re right.
I meant more long term resentment than immediate upset really.

Look, I don’t know your daughter. Sometimes I’m wary of the advice people give parents of autistic children/young adults on boards like AIBU. Typically, a number of the posters giving advice won’t have had any experience of parenting a ND child and, as you know, many of the usual parenting strategies simply don’t work and aren’t appropriate if there’s ND in the mix. So I’m just urging caution I suppose. You know your daughter best and every autistic person is different anyway. Just because I know that sort of strategy wouldn’t work for my DS (because it’s a case of ‘can’t’ not ‘won’t’ in his case) doesn’t mean it won’t work for your DD. But I think you need to keep in mind that her emotional maturity ‘age’ is likely less than her actual age.

I’m also interested in the therapist’s take on this. Do you know what she would advise? Did you get any feel for that?

I don't really expect that a therapist would advise anything. It's not her job to advise what's best for DD, she's not DD's therapist and she knows DD only through what her parents say and how they feel about it. She'd listen to the parents and help them find their own way forward.

No, I know. You can usually get a ‘vibe’ though about whether someone thinks something is a good idea or not...

I wonder how much resentment there will be long term from the other daughters. With both the behaviour they had to put up with for ages before the OP finally dealt with some of it plus watching their parents give money endlessly to their sister and possibly even the entire house in the future.

The better the therapist the less you will pick up that vibe.This is the parents' responsibility and honestly the therapist is no more likely to be right about DD than we are.

Plus no fair to ask someone who overthinks and says she might have an ASC herself to try to guess what her therapist is really thinking!

The OP has been very cautious with DD so far, maybe over-cautious even for an ND youngster. And so now she's trying a firmer approach. That's OK to try as a still-loving empathic parent and it's not going to cause a lifetime of resentment.

I wouldn’t read much into the therapist asking what you’re looking to achieve on cutting down or out the allowance. I often ask people similar questions in my corporate job - often very senior people - when they are telling me their proposed actions but not the goals behind them.

OP it is good you’re identifying your own rigidity in thinking and considering how it is can block your success here.

@Brightnessinside caution is all very well and good but they are hardly turning the DD onto the streets here, they are looking to nudge her into not wasting her life unnecessarily. They have been exercising too much caution for years and it has achieved nothing. Continuing to do nothing is not a neutral act

Plus no fair to ask someone who overthinks and says she might have an ASC herself to try to guess what her therapist is really thinking!

Strange that you asked OP more or less the same question if you think that.

Did the therapist ask this question in a "doubting that you are making the right decision" sort of way or a "getting you to clarify your thoughts and make sure you and DH are both on the same page" way?