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 😢

You see, I disagree. I think there is an urgent need for drastic change. Its very late in the day, she is already a dysfunctional adult and her potential and options are dwindling by the day. That's just how this cruel world works.

It is theoretically possible to get an EHCP at this age but they don't cover university, so it'd be better to speak to universities directly about what support they have.

I'm sure there are threads on here discussing that. Some have special quieter accommodation etc.

The birthday shenanigans could be the point of change OP! Vow that positive changes will occur by next year!

What does she do during the day if she doesn't work and isnt in education?

Dh and I have had good support over the years from a variety of places and we have dipped in and out of NVR. We have made some progress eg setting some boundaries over what I will and won’t do and at what times etc. But clearly there is a lot more work to be done.

You seem to view being tougher as cruel but I’d flip it on its head and view what you are doing now is cruel. You are enabling her to stay in an artificial bubble. She’s not happy, you aren’t happy.
She obviously can function if required to eg babysitting. She’s presumably not telling the parents and kids to fuck off.
Yes she might need more support but zero expectations and letting her treat you as an emotional punching bag isn’t helping her.

It’s not in ICD 11 or DSM V so it’s therefore not an. official ‘diagnosis’ as in there is no diagnostic code for it.

The maximum that a mention in the RCPsych literature means is that it is a recognised phenomenon. It is mainly recognised by the autistic community to be a description of their lived experience rather than something that is defined by science. That also means that the recommendation for rest and demand avoidance can only be anecdotal. The reality is that no one has done a trial
of different approaches so no one can really say what is the best treatment.

Please can someone reassure me that it’s not too late to make changes? She’s 19 not 30 right?

Yeah, the problem with drastic stuff applied to a very anxious teenager is you may not get far at all or could quickly be into very problematic territory. Much depends on whether it's can't or won't.

Of course not.

My niece is around that age. She's at university, working and has a boyfriend.

She had no friends or hobbies up to 16 and rarely left the house although she did go to school.

My sister moved her to a different sixth form and she has just flourished. I think she was probably pretty unhappy before.

Since you can clearly see that she is not happy, and it is obvious that you are not happy, surely you have to admit that your approach so far is not working? Being "happy" is not the be-all and end-all of life (and you might want to remind hervof that and that there is no automatic right to be made happy, nor is it the only important parameter), sometimes others things are more important. But some happiness in life makes various types of success, fulfilment, usefulness etc, more likely as it feeds in to motivation.

I’d just stop the allowance and phone payment. If she asks just be very matter of fact she’s 19 now and it’s inappropriate you wouldn’t treat her like a child, you know she doesn’t want you interfering.
If she raises what you did for older 2 say they were students. When she’s a student you’ll revisit it.
She doesn’t need a phone if she’s in the house 99% of time.

I should say that my niece's mum, my sister, was rather similar and it took her until well into her 30s to be able to cope without a lot of support from my parents. Some people do struggle more.

I'm not sure I see this epidemic. I think it was just more hidden in the past. I'm in my 50s and can think of several sets of my parents' friends who had a non-coping child who lived with them or who needed a lot of support. It was easier to do that when a household could manage on a single salary and when education was less of a conveyor belt.

No, "burnout" is not a diagnosis. It is a vague description which probably means different things to different people and is a lazy way of opting out of looking at the complexities of mental health and behaviour.

I had what I guess was a form of “burn out” after school. (The term did not exist in the 90s. I did not even know I was autistic in the 90s). I started college and couldn’t cope. I self harmed and was a total mess. I ended up refusing to go to college. I’d got all As/A*s at GCSEs. But I was just a wreck and dropped out. My mum was very nice about it. She said don’t worry darling it’s not for everyone. However. You will not sit about and do nothing. You work and pay for yourself. If you are in education I will fund you. So I went and got a job. Now I wasn’t the nicest person for the next 5-10 years at all (see my previous post). But. I still worked. I had no choice. By age 25 I was able to think more clearly about what I wanted from my life. And I went back to university and progressed in life.

So you seem to think “burnout” requires doing absolutely fuck all for 5-10 years in order for someone to launch in life. I launched despite working and my mother giving me a stern talking to. I think general maturity helps. This will happen with or without 10 years off. And I honestly think for the person suffering, actually DOING something helps. I truly believe if my mother had let me sit at home doing nothing for 10 years I’d still be doing nothing now 30 years later. I often joke if I won the lottery it would be bad for me. Because I honestly think I could easily slip into not really going out unless it was something I really really really wanted to do.

(I know you’re probably going to say I wasn’t really suffering from burnout. But how do you know? Even I don’t know because it wasn’t a thing and I can’t go back 30 years and be assessed).

I have taught (well tried to) a child with autistic burnout and it absolutely exists and is a pretty scary thing to witness.

I think there are some really harsh responses here. It isn't always as simple as pushing them to do things. I have certainly never been a gentle parent, I wish I could be more patient. I kept on pushing my DD to do things that she clearly couldn't cope with and it ended up making the situation so much worse. My elder brother, now in his 40s is autistic, not diagnosed until adulthood. My parents pushed and pushed him until he had a complete mental breakdown. He still can't live completely independently despite all the pushes they gave him.

There have always been people with these difficulties but I believe that the way the world operates currently just makes it harder now. So much stimulation everywhere. It's hard enough for NT young people to find jobs, let alone those with any barriers. The way almost all jobs are recruited favours those with excellent communication skills and confidence.

I would work on trying to get her to consider medication. My DB will be on anti-depressants for life but they have enabled him to work for many years. It's a low-paid job but in an area that aligns with one of his special interests. Medication might help get her to a place where she can more easily accept therapy etc. Is there an autism outreach service in your area?

Yes, features that people might call "burnout" of course exist. But it's not a diagnosis. It is an undefined term which tells us little to nothing about how to manage the situation and as such is unhelpful. That-s like saying a headache is a diagnosis. It's real, the person is absolutely experiencing something unpleasant (which will vary between people, situations and causative factors). But not a diagnosis, and should not be thought of as such

I’ve only read your posts but you don’t sound like someone who wants help. You have pushed back against every suggestion that your parenting of your DD is not working, you are not open to a different way. If you genuinely are asking for help you might need to change your own attitude before you can actually receive it!

if the replacement cake was that big a deal why didn't she remind you at any point over the last year?

I mean, you do seem to be making a rod for your own back in that it was ridiculous to offer to get a second cake in the first place just because there was a smear of chocolate on it so perhaps going forward don't get into these situations where you have a chance to "let her down" by not doing something to make up for something that you shouldn't have accepted fault for anyway. If she's unhappy about something minor just acknowledge it and then grey rock rather than always trying to fix it.

She doesn't get to decide whether money is a proper birthday present or not. It might not be the present she wanted but she's an adult - adults thank people politely for gifts whether they like them or not. Most adults don't get big/expensive presents for every birthday. That's something she should be able to understand whether she's autistic or not. Stop with all the 'back dating' presents because she can't decide.

As pps have said, she can be both autistic and (sorry) a bit of a dick. To some extent it explains why she might feel a certain way but it doesn't justify her choosing to act (unfairly) on her frustrations.
Similarly you can be both neurotypical and be allowed to get frustrated at frustrating behaviour!

@Tickingcrocodile "pushing people" to do things is absolutely the opposite of an effective behavioural approach.

Did you post this a year ago? This is all very familiar.

At four, you can "push" someone to do something. At nineteen, if they have adequate cognitive capacity and understanding (which this girl obviously does) the approach must be facilitating them to make their OWN choices with full understanding that actions and decisions have consequences both short and long term, in the real world. Its not "you have to do this", its here are your options, here are potential outcomes of doing (or not doing) each one of them. That goes for behaviour (if you are a rude person then...), and decisions (if you dont get back into education then...). Realism not pushing or punishment

I can't see from your posts, but what does she do all day OP?

She isn't at college, uni and doesn't seem to he working. Apart from some babysitting every now and then?

What does her day entail?

Not too late to make changes but changes you will have to make in order for this young adult to be able to live in society.

She is exactly the age my DD was when we signed her up to the Access course. She turns 21 in a few months and has almost completed her first year - classics at a top uni. There are issues with her living accommodation, but nothing insurmountable and she is learning that she needs to adjust her behaviour if she wants to build alliances in the classroom and amongst her peers. It has not been without hiccups - major meltdown around Christmas during her Access course, triggered by UCAS applications - but she engaged with an ASD/ADHD mentor and GP over anxiety medication and we worked through it. There is loads of support at the universities when she gets there and most of our ASD friends chose unis within an hour of home so they could mix and match a year of living out and commuting as needed. A term of living on custard donuts and pepsi max meant she was rather ill by Christmas this year, but she has been guided by a college friend on one-pot cooking with an airfryer and/or a rice cooker and has turned that corner too.

You absolutely can combine being tougher with making it clear that so long as she works with you, she will always have a home and your support. That you will never abandon her. You can make clear that it is precisely because you love her and believe in her that you need her to step up and start moving forward.

So yes - she is only 19. There is plenty of time and it is totally not too late to make a complete change of tack in the way you handle her and to get her back on track. Feel free to mention my DD. My DD is taking the course as much as a 3 year breathing space to work out what she wants to do with the rest of her life. She knows she will need to do law or accountancy or civil service exams (ie some sort of professional/vocational training) after her degree, but this takes the pressure off and is allowing her to ‘move forward’ whilst working it out and growing up.