Is DD being dramatic or AIBU

[Tempbbp]

Would really appreciate some thoughts on this. I don't want to minimise DD's health condition, but I wonder whether she should just get on with it?

DD31 was recently diagnosed with autism. She's not got an intellectual impairment, but she's struggled with mental health and anxiety all her life. She works, but she's been off sick for two months with anxiety. She was also off last year. She lives with her wife and their house is always a mess.

DD is saying that she can no longer cope with her job and fears she'll end up having to resign, as she can't find any of the help she needs in both her home life and career. She's tried anti-depressants and access to work, and says neither were successful and she can't cope. She claims that the GP can't offer anything else, and that waiting lists for therapy are really long, but that therapy is unlikely to be helpful because it wasn't when she tried at 18.

I want her to be happy, but she's always up and down and it makes me think sometimes that perhaps she just needs to get a grip. I know that sounds horrible, but looking at the state of the world as it is, she's smart and capable, but always thinks the worst and believes there's no way out. If the GP says they cannot help her beyond medication and therapy, could it be that she just isn't engaging with them enough? Is there something else that can be done or other help available? I don't want to see DD unemployed and I'm really worried she'll just quit her job with nowhere to go. I don't know much about this so apologies if I've said something offensive.

@Tempbbp

Her wife agrees that she (the wife) works too much and isn't there enough, but not to the point where I can see her changing that. She's emotionally supportive, but way more on her ass about getting on with things than you all seem to think I am. She is very much of the opinion that when you are sick you go to the doctor and the doctor will help you.

I'm upset that someone upthread is suggesting that it is somehow my fault that my daughter did not get diagnosed earlier. Yes, I "missed" her autism, but so did everyone else. Never in her entire childhood has a single person ever asked: "Do you think your child may be on the spectrum?"

My child actually displays some of the classic signs of autism too, mainly that obsessiveness about niche interests. Though she has a lot of those, so conversations with her still end up covering a wide variety of topics. She's seen a child psychologist and school councillors. If they never thought about it, why would I be more qualified? They told me she had anxiety, that seemed to be it.

I can't see DD running her own business or going freelance. She is quite childlike in some ways and enjoys being praised by a superior. I've asked her what she thought her ideal job would be and she said she'd love to be "someone's number 2", which I think I have to picture like one of those political dramas that she enjoys watching. If I had to say what DDs main struggle is it would be a lack of regularity. The longer the gap between things, the more anxious she gets. She says that unless she drives it there is little communication from work. Lack of communication makes her anxious, and she's tired of having to do everything apparently.

I recall her having this seemingly irrational hatred for tights and anything wool as a child. She also gets startled easily. Now I know that's probably due to her autism, but that's easy to say in hindsight. She had good grades and (though she was bullied a fair bit) also had many friends, most of whom she's kept over the years. I think it's because DD can be quite strong willed too. It's her way or the highway when it comes to certain things, and if people don't like it she'll find people who do.

I've heard that people who have autism with a learning disability sometimes get a support worker to help them live more independently. Is that something that might help my DD? Or will they laugh at her because she'd be deemed to capable for that kind of stuff? I know you keep slating me for thinking that she might need a kicking, but she's at her best with authoritarian types actually. In school her grades were much better under strict teachers, and she speaks fondly of managers who had their shit together so to speak. She has a sort of admiration for certain types of people.

I think chaos and too much freedom makes her feel anxious, both at home and at work. At the same time she wants everything to be varied and fresh and mentally challenging, which I think can be confusing as they seem incompatible.

Hi @Tempbbp, sorry I haven’t read the entire thread but I have read your posts.

I just wanted to say that I am an autism support worker and I support adults that don’t have learning disabilities. Many of them are “capable” to the outside world but the reality is often quite different. I work with a 32 year old woman who sounds quite similar to your DD. So I’d definitely look and see if there’s any autism charities nearby that could help. My SU uses her time to have me “motivate” her to do her cleaning and shopping, she likes to do it herself but I would help if she wanted me too.

Sorry if you are getting a rough ride here. It’s clear to me that you want to help your DD but having depression is horrible. I have been unable to work full time for many years and my mum has always said that I need to “get over it” (not quite in those words!). It’s clear that she wants the best for me as she knows time off work is much worse for my mental health but unfortunately someone else telling you that you just need to do something when you physically can’t, doesn’t help the situation. I don’t know the answer though as I’m still in the middle of it!

@Nosensei Thank you for your post, that was very helpful. Are you able to tell me a little more about support workers and practical help for people with autism who don't have a learning disability? If you don't mind of course.

My DD has mentioned a couple of times that she would really like having someone to help her with the practical things she struggles with, but she's scared she'll get laughed at or rejected as she's not ill enough. She doesn't have the energy to look into this at the moment, so I'd like to do it for her. The council website is not very helpful though, so I'm struggling to make sense of it all.

@RizzleDrizzle she monologues to me because she can. She doesn't do this as a default. You seem to be very determined to prescribe to me exactly how my daughter's condition manifests, and how I don't understand anything about her. There's nothing more I can say on the matter. I've spoken to DD, she's very open about her struggles, the social interaction/communication aspect isn't what's currently causing her to struggle at work. Communication is my DD's special interest. She may find it exhausting in certain situations, but she's not as impaired in that area as in others, such as executive function, repetitive behaviour, motor skills and information processing. Everyone is different.

@Tempbbp of course, I’m happy to. Can I PM you?

@NoSensei I know that depression is very debilitating and hate seeing DD feel so crushed. Don't worry, I don't tell her to just get on with it. That is sometimes what society tells you though. That there comes a time where you just have to give up and tell someone to either get on with it or you will quit on them, like with addiction. I was wondering whether it was the same in this case, so I asked. It's not about getting on with it emotionally, but more about whether she's doing everything possible/available to get better (her depression that is, not her autism).

If she was NT I'm sure someone would have asked me already what she's doing to get better. She's not NT, but I also don't want to go down the hole of pitying her due to her condition, because I feel that isn't doing her any justice. She's doing a bit better and is thinking of returning to work, but I want to explore what we could do in her private life to ease her mental burden, because I think she takes all of that stress to work with her and ends up starting the day at capacity.

@NoSensei yes of course

she monologues to me because she can. She doesn't do this as a default

Yes exactly she’s using it to mask

Why can’t you listen.

We are telling you how autism manifests in a large amount of the autistic population.

Why won’t you listen

Of course she can so can I! It’s not a good social skill though it’s a very very very bad one! And one neurotypical discourage but is autistic ladies use it as away of masking our autism because we know being autistic isn’t socially acceptable

Ecerybody else I’m so frustrated I am going to have to unfollow
This attitude makes me sad 😢 and for my own health I’m out

She sounds very much like me.

I was diagnosed at 40 and am currently working full time but really struggling with that and the house. Anxiety is so bad at the moment that I mostly hole up in one room and just can't face the housework or other tasks that need to be done.

I'm sure someone from the outside would say just get on with it, you're so capable. But it's like my mind just stops me from doing the things that need to be done. It's all too overwhelming and I'm scared of meeting down completely. Just imagine living your life in a state of heightened stress with things currently being chucked at you to catch and you feel like you can't keep up. Our bodies can't function under constant bombardment.

Practical support is what's needed. I would like someone to cook for me, help make basic decisions, help me organise my stuff, hep with cleaning. And then reassurance and emotional support. Help me to recognise that I can do things and although it feels like the end of the world sometimes, it really isn't.

If you told me to get a grip, I don't think I would ever trust you again.

*melting (not meeting)

My DD has mentioned a couple of times that she would really like having someone to help her with the practical things she struggles with, but she's scared she'll get laughed at or rejected as she's not ill enough

There are charities with support workers who help with things like budgeting, applying for PIP and UC, helping people with mental health conditions to grocery shop online, developing a routine eg for housework. But they usually try to help the person regain independence, not do it for them. If she’s so depressed she can’t take care of herself or carry out basic daily tasks, she needs to see a doctor. Possibly even a short stay in hospital (mental health unit) where they’ll help get into a routine, attend therapy groups, practice life skills like cooking and cleaning. They won’t let her stay in bed all day, she’ll be prompted to wash, dress, attend for meals and groups, do her own laundry, have sessions with a psychologist and psychiatrist and OT. Staff in mental health units see a lot of patients with autism and depression.

But if you want a carer to come in and cook, tidy etc I think you’ll have to pay privately for it.

@RattleOfBars

My DD has mentioned a couple of times that she would really like having someone to help her with the practical things she struggles with, but she's scared she'll get laughed at or rejected as she's not ill enough

There are charities with support workers who help with things like budgeting, applying for PIP and UC, helping people with mental health conditions to grocery shop online, developing a routine eg for housework. But they usually try to help the person regain independence, not do it for them. If she’s so depressed she can’t take care of herself or carry out basic daily tasks, she needs to see a doctor. Possibly even a short stay in hospital (mental health unit) where they’ll help get into a routine, attend therapy groups, practice life skills like cooking and cleaning. They won’t let her stay in bed all day, she’ll be prompted to wash, dress, attend for meals and groups, do her own laundry, have sessions with a psychologist and psychiatrist and OT. Staff in mental health units see a lot of patients with autism and depression.

But if you want a carer to come in and cook, tidy etc I think you’ll have to pay privately for it.

Where is this magical unit? Only joking, though there's no way they'd admit her. She almost killed herself once and they still didn't admit her. In the part of the country I live, unless you are actively threatening someone with a machete they'll send you home.

@RizzleDrizzle the vast majority isn't everyone. You tell me I'm not listening. Likewise I don't that think you are really listening to me either, in which case you are right, it's better for both of us if you stop watching this thread.

I've been reading this thread over the past few days because you might almost be talking about me. I am autistic and have ADHD, both diagnosed in the past five years.
The issue that stymies me, and sounds like your DD has trouble with, and that hasn't been mentioned on this thread, is 'executive function'.
Basically, this is the capacity to make decisions, to see what needs doing, to prioritise those things, and just to get up off your arse.
If your EF is impaired, you may be able to do all those things, but it is much, much harder than for most people.
For years I was able to get by, either by improvising or by putting my conscious mind to work when most people could do it without thinking.
In my forties, that changed and I have had to realise that I'm unlikely ever to go back to being the person I was, because it was unsustainable.
That is a very difficult realisation to accept, even though ultimately I believe my life will be better because of it.
Your DD has a disability. However hard she works at it, it won't go away.
She also has depression, which is not going to go away on its own. The right antidepressants might help, but therapy will only work if the therapist really gets how differently autistic people will experience it.
If your daughter has only recently been diagnosed, there is a long road ahead for her to really grasp what it means for her. 'Getting a grip' is unlikely to be a useful approach.
A combination of practical, but non-judgemental, help with some research on your part to understand what all of this means, is probably the most effective way to help her; but you also have to accept that she is an adult and will do things her own way.
I am sorry you're dealing with this, but I think you have huge cause for optimism - just getting the diagnosis is a huge step on the way to living the more fulfilling life your DD deserves.

Where is this magical unit? Only joking, though there's no way they'd admit her. She almost killed herself once and they still didn't admit her. In the part of the country I live, unless you are actively threatening someone with a machete they'll send you home

I’ve worked on many of these ‘magical units’!
They’re all over the country. How do you know they wouldn’t admit her? Have you taken her to a psychiatrist?

It’s true there’s a bed shortage, and people with certain conditions (like EUPD) are often declined admission if it’s thought to be counterproductive for them. However your daughter sounds clinically depressed and unable to look after herself. Not being able to get up and wash, cook, clean, get to work, lack of motivation and consistent low mood all suggest clinical depression. Many people receive inpatient treatment for this sort of mental health crisis. It would help her get into a better routine, give her professional support and medication, and she’d receive support and follow up on discharge. They’d help her with vocational issues too, eg most units have an employment specialist to give advice about retaining your job or reducing hours, asking for a phased return, even changing career path. Have you spoken to her GP or psychiatrist and explained how good she is at masking and how unwell she is?

Her community mental health team can help with the above too, but they’re even more understaffed at the moment. But you need to keep trying to get her some professional help.

@RattleOfBars are you talking about a unit supporting people with Autism and Mental Health condition/s? Because I don't believe at all that adults who are clinically depressed but not actively suicidal can get a hospital bed in a unit like you describe.

Between me and friends we've been in around 20 hospitals and not a single one would have got such a glowing review. The ward I spent the longest time in had no pyscologist, no occ therapist, only one psychiatrist for 40 women. Certainly
No job support, no one to wash clothes or ensure patients washed. Meals and meds were regularly missed if you weren't in the queue or unaware it was time. Restraints were the norm and happened to most patients on a weekly if not daily basis. Patients very poorly screaming all day and night. I can't see how this environment would be supportive for anyone let alone someone with sensory distress.

Sympathies OP. I think you are getting some harsh responses here.

You come across as a worried mother who cares for the future of her daughter, and came for advice here BEFORE saying anything potentially upsetting to her daughter.

Current life expectancy in the UK for a woman is 83.1 years so I understand you worry if your daughter's employment ends at 31. You are unlikely to be around to help her in life, and she needs to use her prime years to gather assets for later if possible. Who knows what state the social solidarity and welfare will be like when she gets to retirement age.

I am afraid that apart from supporting your daughter emotionally, she is now an adult. I am concerned that the reason she states she needs to quit work is that she lacks support both at work and at home (if I read correctly). Will her DP be more supportive when DD is unemployed/home all the time? There may be issues there she wants to talk to a counsellor about.

I have no solutions, but sympathies for you, your DD and her wife.

I agree with the PP about maybe daughter could consider ADHD dx.

I think realistically getting support via NHS or your local authority is going to be hard. I think Personal Assistant for ADHD is more established in USA, but sounds like what your daughter is saying would help. Of course affordability and finding the right person would be barriers.

Maybe if you can contact some local support groups and get some pointers, would be less overwhelming for your DD.

@RattleOfBars are you talking about a unit supporting people with Autism and Mental Health condition/s? Because I don't believe at all that adults who are clinically depressed but not actively suicidal can get a hospital bed in a unit like you describe

I’m talking about an inpatient psychiatric ward (not specifically for autism, but we have many patients with autism and depression in crisis who respond well to admission).
I agree it can be a stressful environment for people with sensory issues, as there are people with psychosis and mania who often lack insight and often scream/shout/disrupt therapy.
But all staff are trained in autistic spectrum conditions, sensory awareness and sensory modulation techniques.
The units have quiet areas and relaxation rooms and sensory gardens.
Clinical depression and inability to attend to basic self care needs medical treatment by professionals, in the form of medication and therapy and occupational therapy. And the nurses and HCAs help patients get up and washed, dressed, attend meals, escort them to therapy groups and put support in place for discharge.

This is screaming ADHD to me. The hyperfixations, the need for constant diversion at work, the need for a lot of contact, the impulsivity, the monologueing, the strong will, the spinning out when it's quiet into apathy and depression.....

DS has it, but is still at school. I have it, but it's undiagnosed and I don't think I need medication so will probably never bother to get diagnosed now. What saved me is retraining in my 30s. I was in jobs like your DD is in, and absolutely plunged into depression and despair.

I cannot work on my own initiative. That's my Kryptonite. Having to work from home would break me. Yes, I would likely get signed off. That all sounds highly relatable.

So I retrained into the healthcare sector. I have since heard that a lot of adults with ADHD thrive in a hospital setting. There is a rigid list of protocols so you do not have to act on your own initiative. It's highly social so you can have feedback from your peers without fear of judgement as theres only one way of doing things. So you're not going to "fail" as long as you follow the instructions. There's immense reassurance in that. Also it is a constantly changing environment with enormous amounts of variety. You rarely see the same patient twice, or if you do it's with plenty of time in between. So it's fascinating.

I think she's just in completely the wrong field. People need careers to suit their brains.