DD’s birthday was an utter disaster

[bendmeoverbackwards]

It’s DD’s 19th birthday today. She’s ASD and has been out of education for a few years.

Last couple of birthdays have been disappointing to her and I know this one brought up a lot of emotion not just about birthdays but also her situation in general.

I asked her a few weeks ago if she wanted to see a particular show and a meal at a steak place. She just said no but gave no other suggestions. I then asked last week of she wanted just a meal out and where - no response. So I decided to book a local restaurant just in case as Saturday nights get busy, with the option of cancelling if she didn’t want to.

When I told her, she wasn’t happy and said she couldn’t do it now because I’d chosen it (autistic brain). I asked where else she’d like to go but didn’t get a reply. I suggested a takeaway, took hours of questions about this, she didn’t see a takeaway as a birthday celebration. She eventually decided on pizza.

I also got her a beautiful personalised cake. Last year for her 18th, I got her a nice chocolate cake with her name on but it didn’t have the same personalisation as her older sister’s 18th birthday cake (which was celebrated in lockdown so I pushed the boat out a bit). Also the board base was accidentally thrown out when there was a tiny bit of chocolate left on it. She complained about this for months. I said I would buy her an extra cake (cheapy supermarket cake) but I forgot.

Now she says she can’t have this year’s cake because of the lack of the other one and it would be in the wrong order (autistic brain again).

Choosing presents is also difficult for her so I chose a few small gifts and paid in £50 birthday money into her account. She didn’t like this either, she wanted to choose her own presents (but from past experience she takes ages to choose, months and months, so I thought I’d make it easier by giving her money).

Written down, I realise she sounds like a spoilt brat. But I didn’t do some things that I said I would eg buy her an additional cake and take her for a belated birthday meal (from last year).

The evening ended with her sobbing in the kitchen and me losing my temper 😢

I think you need some support addressing the suicide threats. Mine did the same - I actually think they are being fed/encouraged in this behavious by SM. Mine had told social services and CAMHS that she was going to kill herself before her 18th birthday and that we were not to acknowledge it.we were on suicide watch for over a year - knives locked away, medications the same, myself not sleepting more than a few hours a night for fear she was roaming the house at night looking for the method of choice. In the end it became clear she had absolutely no intention: she loved her brother too much to do anything. ‘I want to kill myself’ was her way of saying - I hate myself and my life and I wish it would all stop, that I would not wake up tomorrow because every day I wake and its the same groundhog experience of failure and self hatred’. The self hatred, the fear of failure, the anxiety over never being able to take care of herself is what we had to unpick and provide her with the skills and tools to navigate the world without us. It was the total dependency on us, the fact we stepped in to fix everything that was undermining her self esteem.

The last time she verbalised it - I took her to A&E and had a absolutely blew my gasket. She had been self-harming again on that occasion. I told them that if she was serious, if she was not safe, then I would not be bringing her back home, that we as a family could not cope with it any more as we were done. That it was cruel and unacceptable that her younger brother had to live in a household where the constant threat of finding her dead in the morning was our normal. They had to section her and home her or she had to commit to therapy. We would not have the fear and the responsibility laid at our feet because it was very slowly killing me and damaging my MH. No more.

We spent hours with the MH team - and yes, they did eff all, but she really understood she had crossed a line. My DD actually adores us but had become completely self-centred. It took us saying that if she continued she would have to move out, that DH could not function at work when she behaved like this, that there were redundancies upcoming and he might lose his job - especially if he was not in a good place because of her, Etc. Instead of shielding her we laid it out - her behaviour was destroying us and putting our home and her dad’s job at risk. It was making us ill. And though we planned to always be there for her if she kept pushing there would have to come a time when we chose ourselves and each other first.

I know she autistic. But she is autistic, not an unempathic sociopath. She totally knows that whining that she wants to die send us, CAMHS, the GP into deathcon1. Because she isn’t stupid and all her online chat groups and SM ticktock groups tell her so. It’s the perfect way to sidestep.

OP your daughter will continue to do this until you tell her to stop, until someone - not necessarily her - reaches crisis point. I would truly advise against letting it get that far. The next time she tells dad to eff off, the next tantrum she has, you tell her that it’s enough. That she can pack a bag and leave. And mean it. Or she capitulates and apologises. Sit down this week and explain that this is what is going to happen if she does it again. Tell her you are drawing a line in the sand and that she needs to respect it or make plans to leave. And offer her the alternative: that you and dad will 100% be there unconditionally if she engages with education/training and makes a plan to move forward. Oh, and that she will have to get over her intellectual snobbery because in the social hierarchy, reaching 21 with nothing but GCSEs puts her in amongst the least educated in Europe. The power to change that is hers. And only hers. But you will do everything you can to support her in making that change.

It’s very difficult but what you need to keep reminding yourself @bendmeoverbackwardsis that autism, PDA. Burnout or whatever, doesn’t make any one person’s rights trump anyone else’s. Every person is deserving of respect regardless of whether they have a diagnosis or not. And it’s als true that a person can have a diagnosis and also be an unpleasant manipulative person just as someone without a diagnosis can be.

I somewhat agree with both of you. We had a situation where a professional was telling us we must not gently nudge our child towards the next step after GCSEs. They never said the word burnout but I can only assume this is what they were thinking in telling us our 16 y/o must be allowed to do nothing for years if necessary. This really went against our gut instinct.

What really helped was getting him on a course he enjoyed that had a tutor that everyone on the course respected. I'd been saying to cahms that he would respond far better to a mentor than the weak watery offering they had and it turned out I was right. He really stepped up.

People don't discover their capabilities sat in their bedroom. They don't find self esteem when they don't discover what they are capable of and especially not when they know how different their life is to other teens. They aren't stupid and they know the world is going on without them! We don't know what stories they are telling themselves about this situation.

I’m 54, dh is 62. He’s not retiring yet, will prob go on till 67. But we have big plans to travel. And yes you’re absolutely right, I need to ensure that by then dd will be independent. We do lots of short trips away which we love. And planning a big trip for our 30 year wedding anniversary in Nov 2027.

Totally agree with this. I remember another thing my mother said to me at one point during my awful early 20s years during a particularly bad period from me. She left me to calm down, then came into my room and calmly said “do you know your father had had a minor heart attack the previous month? No? That’s because you never ask about anyone else. Carry on as you are and you’ll end up putting him in an early grave.”

I cannot tell you the effect that had on me. Again it wasn’t an instant change in me. But honestly sometimes you need a shock to make you realise what effect your behaviour is having. I think lots of young people (whether autistic or not) are very self absorbed. Honestly when I was younger it didn’t even cross my mind AT ALL that my parents had issues. It wasn’t that I didn’t care. I just didn’t really think of them as people with health and emotions like that. It really did me good to see their emotions and start thinking of them as people and what my behaviour did to them.

https://www.capel.ac.uk/course/animal-management/animal-management-advanced-diploma-level-3-courses/

I think my problem up to now is allowing dd to just dismiss any suggestions of courses I make to her without pushing her to look at alternatives.

We have tried various therapy over the years but dh and I have now found a family therapist who we can see together.

I'm sorry, that sounds awful.
May I please ask if physical causes were checked out?

My son was severely folate deficient but we were told all results were normal and I only discovered it when I asked for his results six months later. He was borderline for b12 deficiency but this is a level that many people struggle at. One point lower and he would have been considered deficient. I felt like they thought we were in some sort of denial wanting to rule out any physical causes and I'll be honest - the way I felt we had to tread carefully, I did draw some similarities with how carefully a parent has to tread if their child declares a gender identity. He improved over time on these two supplements, but obviously the cause was a Hodge podge of things.

Glandular fever springs to mind as another cause for such debility that it may look like burnout - and it is rife off the back of COVID . I had it as a teen and found my world getting smaller and smaller until it was properly addressed.

With your updates op you’d definitely benefit from therapy.
You seem to view everything as your fault. She’s an adult and responsible for her actions.
If she expresses suicidal thoughts and you all tiptoe around then she going to keep saying that. If she says it then you need to do as advised and get her medical intervention. I can’t see her risking being sectioned.
I think you need to reframe in your head.
By keeping her cosseted at home you think you are keeping her safe but actually you are doing the opposite.
She’s probably asleep now (disordered sleep - up late and sleep all morning) and then will spend hours watching all sorts on social media. You just leave her to it. It’s like leaving a heroin addict at home with a bag of drugs each day. Or a toddler on an iPad all day fed sweets constantly. No job, no education, no chores, no exercise, no volunteering, no daylight. Just hours in her own head dwelling over perceived slights from years ago.
I’d be laying down basic ground rules for living with you. Stop the ‘heroin’ and stop paying the phone and WiFi.
A walk in daylight, some chores - buy her a tin of fence paint and tell her crack on this week the weather looks nice. Anything but lying in bed all day. Move all her unopened things to her room. Anyone would feel like rock bottom cooped up in house on tik tok all day for 2.5 years. You think you are being kind and gentle to her but it’s opposite. Being firmer is kinder.

ND burnout is a concept that people find appealing because it speaks to what they experience. It’s useful in that way for people to have an explanatory framework. There is nothing wrong in that but it cannot be regarded as a diagnosis or something that has any scientific basis or rationale because it doesn’t. When people have done cohort studies or basic research to define what the syndrome constitutes and whether it holds together and can be distinguished from other things then I will agree that it is a diagnosis but not before that.

Where it becomes problematic is when ‘professionals’ give dogmatic advice that is essentially just opinion. It might be helpful to some extent for someone in ‘burnout’ to have rest and demands relieved but I don’t think there is actually any evidence from a randomised controlled trial of that approach vs any other approach and I think the harms of going to the extreme on this are self evident ie that people will end up doing nothing at all and getting more and more deskilled. This is well known with depression where the opposite approach of behavioural activation is taken and this has an evidence base in RCTs and is known to be effective. I am therefore suspicious about promotion of doing nothing as bent a good strategy on no evidence at all apart from personal anecdotes.

You are trying too hard! Nothing will compensate for her additional needs ams you cannot make it “right”. Give her minimal choices(shall we go to x restaurant or y) and tell her past bdays have gone and start afresh. What does she do on a day to day basis?

No that’s not your problem. Your problem is that you keep making all these suggestions and making yourself responsible for solving her issues which you cannot do. Whatever she chooses to do she has to own it and want it herself. What you actually need to do is make less suggestions but put in more boundaries to disincentivise the status quo.

The person in the family who needs therapy the most isn’t going though. The rest of you going won’t change what needs to change.

Yes she was checked out. Nothing wrong physically. No illnesses.

I have put in the hard work since dc was a small child in order for him to function as best as he can as an adult in the adult world. It wasn't easy and at times I also just felt like giving in. I'm talking therapy, Dr's visits that were hours travel time, routines, consequences, coping skills etc etc. He has never once used his diagnosis as an excuse in life or expected special treatment.

I’m sorry. I am really glad things are going well for your son but I honestly hate posts like this.

They seem to say that if only you did things right, were more like me, worked as hard as I did, then your child would be better, like mine.

Let me tell you that isn’t always true. We are all coming from different starting points and autism looks very different in different people. Some parents do their very best and their child may still never live independently. I’m not talking about intellectual disability btw; some autistic people have quite severe MH issues which are debilitating.

Would she do something like OU from home? Perhaps start with openlearn free courses. Or an Access course of atttending college is feasible.

My husband went to a funeral for his 64 year old colleague last week.
Your husband is older. I’d be frank that your plans will include retirement and downsizing in not too distant future. Stop pussyfooting around her.
The course thing you are still viewing as your problem to sort. To keep finding more and more alternatives for her to rudely dismiss. Break the cycle.

A few years ago I suggested online school for A levels, eg Kings Interhigh. She dismissed it as ‘weird’. I have tried everything. She tried a small private school at the start of year 12. Did one day, said she hated it and wasn’t going back. I did everything I could to encourage her to give it a proper try to no avail. That half term I ran around looking at alternative schools.

OP, it sounds like your daughter is becoming a very entitled and difficult young person. I’m sure it was done with the best of intentions, as you clearly love her very deeply, but your enabling of her behaviour is setting her up for a very difficult future. No one but you is going to want to spend time with her if she carries on in this way, verbally abusing people and throwing year-long tantrums over nonsense like a sliver of chocolate thrown in the bin.

At the moment she is being allowed to get away with some really appalling behaviour without any consequences, and is in fact being rewarded for that behaviour by being showered with money and gifts. It's no wonder she has no motivation to do anything with her life; why would she when she has every luxury handed to her on a plate without lifting a finger?

I know it must be really difficult, but I think you and your DH need to start with some tough love so that she has some motivation to change and a chance of becoming someone who lives a fruitful life and who other people will be able to enjoy spending time with. Otherwise she's going to end up terribly lonely. From what you’ve said regarding the way she treats her siblings, they aren't going to want to be around her either if she carries on this way, and you and your husband won't be around forever.

I am autistic too, and I know that it makes things harder, but it doesn't mean that she should be allowed to behave so poorly. Just because someone is autistic, it doesn't mean that they have no control over their behaviour or that they cannot also be cruel, spoilt, or manipulative. Not all behaviour by an autistic person is an inevitable consequence of their autism. Obviously I'm not talking here about profoundly disabled autistic people, but your daughter is clearly not in that category. She sounds fairly bright and capable. She's able to be responsible for children and behave appropriately when in charge of them, which shows that she is able to control herself when she chooses to. You mentioned her making a cake for your birthday, which shows she is capable of showing consideration for others.
19 is still very young, and she still has time to change, but I don't think she's going to get there if you carry on enabling her.

As other people have mentioned, cutting off her luxuries sounds like a very good idea to help motivate her to get off her backside and start studying or working. Some voluntary work would also be a good start. If she volunteered with some people less fortunate than herself, it might help her start to appreciate what a privileged life she leads and be a little more grateful for everything you've done for her. I struggled a lot with social anxiety when I was a teenager, and starting voluntary work at around 14 onwards really helped with that, although I often found it difficult. I volunteered with Brownies, holiday schemes, and an animal sanctuary; I'm sure there are plenty of places like that near you that could use volunteers.

With her suicide threats, thankfully you say she hasn't self-harmed or planned to harm herself, so it does sound like those may well be just another tactic to get her own way, but whatever they are, her current life is doing her mental health no favours whatsoever. As others have said, therapy would be a very good idea for her, but I appreciate it's not possible to force her to engage.

This is a great option - though not sure if you can get student funding for it so may be an expensive route. I did a degree with them and it was great. There were forums to interact with your classmates, some in person classes at the local university for several of the modules, lots of support. My degree involved a week away at Bath University to complete the practical component of research modules (I did psychology).

OU degrees are very highly regarded because they show the commitment and resilience the person has had to tap into to do it. I was able to go to a ‘brick’ university afterwards to do a Masters, so there is no disadvantage. However, I think it does require a level of motivation and self discipline that OPs DD may not have at the moment.- but the on line short courses are free and may give DD an idea of what she might like to do at uni and which Access course would be the better one to get in. Even Oxbridge accept Access courses for some of their degrees, and it its good enough for them, it should pass the intellectual snobbery test!

So tell her SHE has to find a course herself? I’ve recently found out about foundation years at some good unis eg Bristol and London. I was going to share that with her.

I think there is a chunk of helicopter parenting going on OP.

Making mistakes and dealing with those is just a part of life. As is making uncomfortable decisions.
Being autistic cannot excuse you from that in life. It is more about learning how to deal with that, not to just not do it at all.

Could you touch on how the diagnosis was made? Was she aware of what was happening at the time. What prompted it?
Prior to my dc being diagnosed, he did have a lot of appointments, assessments etc. Although he was still very young, we were quite open about what was happening and why.

Focus on the therapy and counselling.

Stop finding courses for her etc, anything you find or suggest will be pointless. She will reject it out of hand or try it to please you once and then give up.

Start setting some goals, in a kind/ non-combative way. Like by September she has to be in education or employment as she will be nearly 20 by then. It’s for her to work out what she needs to do to get there, in terms of courses, skills, medical
help. If she comes to you for help you will help but she has to take the initiative.

See how she reacts but if she’s not doing anything in a month or so, and depending on what the counsellor says, I would start suggesting that she looks into supported living or a flat share and that the current living arrangements are ending- make it clear that her staying at home as a 19/20 year old is conditional on her starting to help herself and that it would harm YOUR mental health to watch your own child waste their life. You’ve got to start at least trying a bit of tough love, otherwise you’ll end up with a 36 yr old moaning about cake, birthday presents and birthday meals. Is that what you want?

OP, it’s time to try a different parenting strategy. Yes your DD is alive, but she’s hardly living. Maybe that’s the best she can achieve but it sounds like she is capable so that seems unlikely.

Aside from her talking about suicide, has she ever actually done anything that suggests this is a risk? Has she self harmed, attempted suicide? Engaged in risky behaviours? Misused drugs or alcohol? If not, then I would consider her low risk and think it’s time to try a tougher strategy. You can sit down and explain to her why.

Please look up parental accommodation. Parenting ASD/ADHD kids means you might have to parent in a way that doesn’t feel natural to you and may mean taking a firmer (but calm) line on things. You will find that some who are diagnosed later in life, this is partly due to how symptoms present but also partly due to the fact that no one accommodated symptoms and we were expected to get on with it. This depends on severity of course, and also is not entirely a good thing, there needs to be some accommodation, but it’s about supporting your DD to accommodate her own symptoms so she can function in the world as an adult, not you making all the accommodations for her to avoid her having meltdowns. She’s 19, it’s time for her to start making decisions for herself. You can give her grace but eventually she needs to learn how to do this if she is ever to be independent.