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.

You might benefit from joining local carer groups to find out how other parents have managed in your situation. My local carer's network runs all sorts of support options for carers, and let's face it, that's what you are, as well as being her mum.

I am carer for my daughter too - a lot of what helps is knowing what services are available locally and the carer's network should be able to sign post you.

My nephew stayed at home in his bedroom for two years and my sister in law was beside herself with worry. He wouldn't apply for benefits either- he didn't go out so he didn't need any money so there was an impasse. Sobi do understand how this can happen

He did apply for benefits in the end - UC, not PIP - and he was given a lot of lovely support to find work. He did an unpaid internship for a while which led to a paid job and he started a long distance degree with a university in Wales - he only had to go there once per year for a week.

I think there are possibly more options out there than you realise. If you are in England, have a look at your LA web site for 'local offer' and post 16 options. You need an ehc plan for some of them, but not for others.

You could also try for a social care assessment - she might not qualify but they should assess her and again this can bring some helpful signposting and would give you some independent idea of her needs.

Someone else once mentioned BPD to me.

@Jellybelly80 can you explain your response to @HortiGal ’s post?

@bendmeoverbackwards in reply to your question - because parts of the reply were very ugly.

The post from @HortiGal ? What’s wrong with it? It makes sense to me.

@bendmeoverbackwards What’s wrong with it? It makes sense to me

Then surely that’s all that matters.

No I don’t think you should do anything else “for” her. I think you, or better your DH and siblings should create an environment where she is incentivised to start doing things for herself. Like incrementally reducing the allowance to a basic level (so she has to supplement with benefits or employment if she wants luxury items/ spending money), reducing engagement in her emotional messages/ behaviour, trying to break the codependent relationship she has with you, going on holiday for longer periods, that sort of thing.

Sorry to persist, but I am genuinely interested what do your DH and her siblings think you should do? What’s their take?

I also agree with potentially getting a family therapist into the home to work with the whole family for a few days if that could be arranged.

I’ve followed since your first thread Op.
How are things now? Any progress from DD’s side. Did you make a decision re allowance.

Sorry to persist, but I am genuinely interested what do your DH and her siblings think you should do? What’s their take?

@Heronwatcher dh is not as much as a pushover as me and is a bit better at setting boundaries but that said, he also doesn’t know what to do for the best. A while ago he was very much of the mindset that things need to change because ‘if nothing changes, then nothing changes’ but this is interspersed with Ross Greene’s thinking ‘kids do well if they can’.

Dd1 doesn’t discuss her youngest sister (dd3 hasn’t spoken to her for 2 years). Dd3 and dd2 are very close and have a good relationship. But dd2 is wary of discussing things with dd3 as she doesn’t want to rock the boat.

Would the 4 of you consider therapy Op then you are on same page? (So you and husband and two older dc) It can’t be pleasant for anyone if dd3 won’t speak to dd1. It comes down to basic expectations if you want to live here you show common courtesy to all family members and join in with chores. It seems like dd3 getting all benefits of living with you with zero contribution.

@Hellometime we tried family therapy (for all 5 of us) about a year ago. Therapist tried very hard to get dd3 to engage without success. Then dd3 went mad that we’d talked about her. Eventually we decided it was pointless without her there.

Dh and I have recently started with a different therapist for the just 2 of us. It’s early days, she seems good and has the right balance of clear boundaries but also understanding the autism side.

OP with regards to the allowance, have you considered letting her know of a far away date in the future it will stop?
Like in 12 months time it will get cut by 1/3, in 24 months time by 2/3 and then end in 3 years' time?
That just might give her the time to get her head around it.#

Glad the couples therapy is helping a bit.
She seems to like communicating by message?
Maybe look at agreeing a message to her setting out boundaries and timelines. A we love you but this situation isn’t good for anyone and can’t carry on type approach.
So we will fund x until y date. Expectation is you contribute to household chores.
My view which I have shared with you before is giving her a phone and WiFi and zero expectations on her to do anything is enabling her. She’s spending hours holed up probably watching god knows what on tik tok. Anyone would feel unwell in that situation.

So if she doesn’t believe in her diagnose, what is her excuse for not being able to function like a normal young adult. She has no job. Doesn’t go to school. Any (real, in person) friends?
Seems like you do everything for her. If she has no disability the what’s her excuse? Sounds like she wants to use her diagnose to not have to act like a grown up but then also likes to throw it in your face that you got her diagnosed, when it suits her.
I honestly don’t know what these young adults expect in life - just have mommy and daddy take care of them forever.
Even with a disability most people have to work, cook, clean, etc and just have to get on with it.

Oh my goodness. Please don’t listen to this idiotic post OP. 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️

@Whattodo1610 my comment isn’t ridiculous, OP and her DH are going in circles , never reaching a decision after years of this behaviour by their DD.
She is fixated on this life she thinks she deserves yet does nothing to obtain it, does not accept her diagnosis, if that’s the case why isn’t she out at uni, has OP ever said this to her?
Many ppl with autism go to uni, have careers, withdrawal of funds would perhaps focus her.
The family are living with her unreasonable demands and behaviour to the point her sister no longer speaks to her.
Before you start, I have 2 autistic DC both adults with careers.

I really think you need to focus on boundaries and deciding on what you are going to do. So: You will stop giving her an allowance, or reduce it. It will be up to her to decide whether she will get a job or apply for benefits. There is no point trying to plan it for her. She's going to fumble, but she needs to. She needs incentive to change. You can be ready to support her and offer a plan, but right now she is stuck. The basic principle here is that you cannot change her, you can only change yourself and your responses to her.

The thing is that she's going to spiral when you tell her there will be a change, but you have to resist the temptation to give in to it. She needs to learn to cope with her own responses and you are actively preventing her from doing it.

She is definitely being emotionally manipulative with how she treats you via text and you need to change your responses to that.

So if she doesn’t believe in her diagnose, what is her excuse for not being able to function like a normal young adult?

@MapleLeaf190 I can’t remember if I’ve asked her this exact question, but she would say she is still suffering from the (‘wrong’) diagnosis which means she can’t do anything. We’ve discussed trauma and how it can be overcome. She says you don’t recover from trauma. I’ve suggested therapy to help, she says she can’t see any health professionals (because of the trauma). I’ve then suggested self help of which there is plenty. She refused 🤷‍♀️

I think you need to turn it back on her that there is plenty of help available and she is refusing therefore she is choosing to stay stuck. You are not going to fund anyone who is refusing all help that has been offered and is available.

Well what does she say when you say that is ridiculous?

It sounds to me like she's getting a lot of this stuff from social media, which convinced people that being told no they can't have a tenner is a grotesque trauma that excuses them from everything.

Being taken to an autism assessment by your loving parents which confirms you are autistic is not a trauma, no. Trauma is things like someone you love dying, being raped, bombs falling on your house. You don't have to go along with this. Feelings aren't facts.

Your comment is ridiculous. Let’s break it down to help the OP.

Why have you ben thinking about the allowance for 5/6 weeks but incapable of making a decision?
OP simply doesn’t know what to do for the best, she’s drowning in all of this uncertainty. Making a huge change like this will likely be very detrimental to her dd. This kind of change needs time.

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.
Utter tosh. Dd definitely is entitled to benefits, PIP and UC. Refusing to accept her diagnosis doesn’t mean she doesn’t have autism, it’s still there, she is autistic, she just doesn’t want to be! It also shows the opposite of what you claim - it shows she is incapable of managing her own health condition.

You are going in circles and allowing her to control your family.
Agree. Which is why OP has come here for help and advice. However, there’s so much conflicting advice and opinions that this thread isn’t really helping OP in the slightest, it’s just making things more confusing for her.

If she thinks she deserves this life of uni the she needs to get off her spoiled backside and achieve it!!
I’ve not actually read anywhere on this thread that dd wants to go to uni. But even if she does, her autism is preventing her from accessing this, not necessarily the fact that’s she’s ‘spoiled’.

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.
Great for your dd - but you are very aware that every single person is different, copes, and does things in a different way, right?
You have allowed your DD to indulge her ludicrous ideas, she needs a shake and told to stop complaining and get on with life.
Agree partly. However dd’s ideas are not ludicrous to herself, they’re very valid to her. She needs professional help, not a shake and minimised, ffs.

Withdraw the money and she’ll likely make a change.
Yes she’ll make a change, OP will likely then have a very volatile, confused, angry dd to deal with.

Hope this all helps you see a different perspective other than your own hard one. The damage you could cause to this dd is huge.

I've skim read your posts and replies from the previous thread, op, and appreciate there will be some gaps in my knowledge of your situation because I'm coming to this thread so late.

Firstly, solidarity. I do have some relevant personal experience, although my dd is much younger. It's exhausting not to have a workable 'solution', whichever approach you take. I am making the assumption that you've tried PDA strategies which haven't worked, but neither has 'tough love'. You feel totally 'stuck' and unable to make progress. I also recognise the family dynamics you describe.

PDA is usually accompanied by extremely high levels of anxiety and much higher rates of burnout, complete with exacerbated rigidity, decision inertia and all the other things you describe. If she is currently refusing to engage with therapy, do you think she might be open to the possibility of considering whether medication for anxiety might help, or is that likely to be something else she refuses? Is there an interest or an activity that she's really motivated by, but currently unable to access and could you suggest exploring medication to help her access that thing that motivates her? Sometimes, once on medication, baseline levels of anxiety reduce enough for the autistic person to re-engage enough to combine therapeutic intervention. Apologies if this has been discussed/ considered.

I realise that you and dh are having some counselling, which is good, and that you gave up on the family therapy. Have you asked your other children if they think they'd still benefit from individual counselling? We are blessed with a very laid back, forgiving, well adjusted 15yo ds, but I don't underestimate the impact his sister's actions have on him.

Agree completely. Their whole post is full of incorrect information. 🤷‍♀️

I do understand why Op hasn’t pushed things as she’s worried about making things worse but not doing anything and enabling an adult live like this is a decision. She’s been living like this for several years.
Giving her a phone and WiFi and letting her sit day and night watching god knows what on tik tok is like giving a drug addict a bag of drugs and turning a blind eye.
I think she’s crying out for some structure and guidance. Anyone diagnosis or not would feel shit holed up in house, no exercise, no fresh air, no purpose, doing nothing she can feel a little pride in.
I’m not saying Op should throw her out or stop feeding her but there’s no way I’d be giving her a generous allowance and phone/wifi while she refuses to do chores and is vile to siblings and mum and dad. While she won’t countenance claiming benefits she is happy to take money she hasn’t earned from mum and dad. Cut off access to unqualified advice on social media where all this silly nonsense about trauma is coming from and reiterate your offer to fund and facilitate counselling or visits to Gp, she needs qualified professionals for support and treatment not tik tok.
I’d set out expectations. The girl seems to like messages. So in writing from both of you with a timescale. We love you but can’t carry on like this.