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.

As opposed to being at home with you supporting her?

If she is on UC she will be supported to find work. Check out the Shaw Trust or the King's Trust.

No, as opposed to her living a full life, going to university (if she wants to) and fulfilling her potential. It feels like she’s been robbed of those things, at least this is what she thinks.

How do you/ did you respond to these messages? They seem unhelpful and just ranting and shifting blame to you.
I think I might not reply or I would consider saying that I will not read any messages like that in future as they are pointless and not constructive. I will only reply to messages that have something we can work on such as an agreement to therapy or to applying to courses or jobs.

You can't make that happen for her though OP. So what's the alternative here? There isn't one, in terms of things that you can control (which is only your own actions).

What happened once she got her diagnosis? Did her behaviour change, attitude, social circle etc?

I assume you didn’t go for a diagnosis for shits and giggles , was she struggling before? Mentally, emotionally?

Did she have any understanding of autism prior to this? Got any support at school? Or did she try to fit the mould of what she THOUGHT autism should be?

@EwwPeople looking back to when she was younger, I did struggle quite a bit with her behaviour - never really outgrew toddler tantrums, lack of emotional regulation etc. Then at age 11 at the start of puberty (when I understand autistic traits become more pronounced) she developed intense misophonia almost overnight and couldn’t be in the same room as people eating. That triggered us to seek support/assessment. Maybe in hindsight we should have waited a bit to see how things went, who knows. But in spite of her reacting badly to the diagnosis, year 7 and half of year 8 went very well, better than I had expected. It wasn’t until
post lockdown that things started to go wrong.

I know. But sometimes you just have to let (what you conceive) as the worst thing to happen before a situation can get better. What you’re doing right now isn’t working so it’s time to change tack.

Also, I’ve been wondering if your daughter may be more than ‘just’ autistic. It’s possible for people to also be diagnosed with something else alongside it.

I think she's stuck in arrested developement. She doesn't want to face reality about her diagnosis, but also about her age and the fact she is an adult now and needs to grow up. She's cosplaying as a little girl at home - she gets an allowance, her Mummy looking after her, and having to go to the job centre and go on benefits bursts that fantasy, as does getting a job or going to uni, does she have eating issues? One of the theories around anorexia is it's partly a rejection of adulthood (adult body, moving on with your life) and keeping in a childlike state.

I think you are doing harm by keeping her in this child-like state. Adults don't get allowances, stop it. She can claim benefits if she wants money. I'd reduce it down by 10% a month until it stops, gives her plenty if time to decide how she is going to fund her hair cuts and nails. She's an intelligent girl, she can work it out and she needs to face discomfort and accept her childhood is over

I also wonder (gently) if you are colluding with this as she is your last child and 'baby', and you are subconciously happy with her still being 'young' and needing you.

But she isn't at uni - she is at home being supported by you.

If you can get her to uni, great.

OP I think you need to reset yourself first. And your dd now needs tough love. You’re against most of the advice on here. The diagnosis isn’t stopping your dd doing anything as such, quite frankly she needs a good sharp shock, a good looking at her own behaviour. And reminding, that her diagnosis wasn’t given easily, they don’t get things like this wrong. If anything, if they’re unsure, you don’t get the diagnosis. Everyone is pussy footing around her, you are enabling her behaviour by not calling her out in a way that works, and for supporting her fully financially. Her being on benefits is not the end of the world. It gives her, and you, breathing space. IF she wants to go to uni, she can. With a diagnosis it’s so much easier to access help and support there. My dd did Open University, it suited her as there’s no way she could physically attend a traditional Uni.

In what way? What happened during lockdown? Did she ever truly come out of it? Did she miss significant transitions/ key moments.Sorry for all the questions, just trying to pin point which moment in time she is “stuck” and why.

The diagnosis obviously didn’t have an immediate impacts at least , if y7 and 8 were fine after it, so at least you can let the guilt for that go. It’s also clear that you love your DD very much and want the best for her, so even if you did mess up anywhere it was with the best intentions and had her best interests in mind.

It might seem like this but it really isn’t. I have her dependence on me. Dh and I are looking forward to an empty nest and lots of travel. We’ve started to go away for short breaks just the 2 of us but longer holidays are currently difficult.

She likes me to reply to every message. I usually empathise and tell her ONLY she is responsible for her life and her happiness.

Dd now says she wasn’t ‘fine’ in years 7 and 8. I’m not sure that’s true. Unless she was masking heavily? What I saw was a happy popular girl who did well academically and made lots of new friends. Even if she was masking at school, she didn’t seem to fall apart at home at the end of the day which is common with masking.

Why didn’t she come to you then? Asked for help, said mum I’m not ok. Yes she was a child, an autistic child at that, but you are not a mind reader. You are not God. You are not omniscient. You could only work with what you saw or was told. How would she react if you told her that?
You also can’t fix the past , what’s done is done. She needs to draw a line under it somehow. Does she have any friends left? Interests?

My daughter is on enhanced UC for disability and full PIP. It works out around £1400 a month. I'm telling you that NOT because i want your daughter to go on benefits forever, but that for now, that might be what she needs. She can earn some money on top of that but I don't know the amount.
If she is not deemed Low Capacity for Work amd Work Related Activities ahe will get less money and UC people will expect her to look for work. The money would not come from you which might be easier for you all. I can see it wouldn't be easy to apply if she won't cooperate or acknowledge how she is.

My daughter is not as academic as yours but is intelligent. It upsets me that she might not meet her 'potential' but the fact is that I would rather she was happy. I think you have to reframe what a 'good' outcome looks like. For example, I dont know if my daughter will ever hold down a job, certainly not full time.

Maybe she wasn't happy at school when she appeared to be . I would suggest with the messages you validate the feelings "it must be horrible to feel like that" rather than try and engage with the content.

I think you all need specialist help. At the moment she doesn't accept the autism diagnosis and says the trauma has ruined her life. I don't know how you move forwards When you say "don't tell anyone then", how does she reply ? If you tell her she's being controlling, what does she say?

Sorry this is all very muddled! I think you need to look into PDA as well.

Good luck OP it's extremely difficult.

This is exactly why you should be taking a step back and letting your DH take the lead. You’re too emotional to implement any of the strategies people are suggesting.

No one is suggesting this will be her life forever but given that there has been literally no progress for 2.5 years maybe this is what she needs for a few months to make her realise how the real world works. And give her an incentive to engage with education/ benefits/ work.

What do your DH and her siblings think?

@bendmeoverbackwards my son is the same age, has autism and a physical disability. He’s currently at university. It’s hard. He needs a lot of support and every few months he thinks about leaving - but we support him to carry on.
I’m saying all this to show you that it can be done…. Your daughter can still have the future you and she dreamed of… but ti do this she needs to - frankly - get her shit together.

Please stop pandering to her demands, her catastrophising, her claims of trauma. Imagine how a young woman with her diagnosis would be forced to cope in a household with less income - there’s no way she could just sit on her arse and feel sorry for herself!

Pps have suggested you take a step back and let dad take charge. I agree. Because your daughter needs some tough love to force her out of her slump.

if you want to stay involved then tell her it’s time to get a job or do a course - the holiday is over.

Even if she can’t get a paid job she can do some volunteer work. Might be good for her to work with people who face challenges every day - maybe a soup kitchen or a food bank or possibly a day centre for people with disabilities.

It’s time for your daughter (and you) to realise just how lucky and privileged she is.

@AintNoPartyLikeANumber10Party you are so right about her privilege and I remind her of this regularly. I work for a humanitarian aid charity and see the real struggles some people have. I talk about my work at home so dd can see how lucky she is. My older two dds are extremely grateful for their secure upbringing, they work hard and contribute to society and the household.

So are you suggesting that we apply for benefits on her behalf? Behind her back or tell her what we’re doing? Do we start with PIP or UC first? Would citizens advise bureau be a good place to start? And suppose the PIP application is refused? I’ve heard the application process is lengthy and not always successful.

She’d probably say that it was the diagnosis that ruined things for her so no point telling me.

Shes still in touch with 2 friends from her old school, they do meet up but only very occasionally. She loves all animals (we have a much loved cat), she used to do dance classes but that’s stopped now. Does a bit of babysitting. Goes to the theatre sometimes with either me or dd2 (occasionally on her own).

Personally I’d not bother with the benefits because it’s just another thing you are doing for her. If she wants benefits she can sort it herself.
I deliberately didn’t mention the allowance because money isn’t the issue - what matters is her doing something productive and moving on with her life. I’m sure you’d be happy to keep paying it if she was volunteering 4 days a week or studying for exams.

I do have another thought - based on the impression that you could afford this…
I think you need to bring a therapist into your home - even if your DD refuses to engage, the therapist can observe your DD’s behaviour, meet with you and then come up with recommendations.

Why have you ben thinking about the allowance for 5/6 weeks but incapable of making a decision?
Your DD wouldn’t get benefits, she would need assessed for PIP, UC would need attendance at an interview and as she refuses to accept a diagnosis she will be deemed fit for work.
You are going in circles and allowing her to control your family.
If she thinks she deserves this life of uni the she needs to get off her spoiled backside and achieve it!!
My DD lost her dad at 15, left school at 16 due to trauma/grief and then done a uni access course and is now at 20 in her 3rd year and uni.
You have allowed your DD to indulge her ludicrous ideas, she needs a shake and told to stop complaining and get on with life.
Withdraw the money and she’ll likely make a change.

@bendmeoverbackwards I’m sorry to say this but I think there could be more going on with your daughter than autism and it may help shed some more light on things if you read up on Borderline Personality Disorder and how it can present/co-exist with ASD.

Oh my god. 🙈