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.

@Whatisthisfuckery I've said multiple times that I don't tell my daughter to get a grip. I asked on here so I could find out whether I should. The answer is no, which is fair enough, but I think I have cause for concern. During this time where Covid is messing up the economy and Brexit seems to be coming around the corner, if she leaves her job and regrets it there's not going to be an easy way back. I'm not saying that as a nagging mum, I'm saying that as someone who has seen her implode the last time she left a job for mental health reasons.

She's already signed off and in total has been off for about five months in the past 18. At some point work might start disciplinary or exit procedures. She tried access to work and they weren't helpful. I think she feels trapped because her normal strategy of leaving before it gets too much and starting somewhere else are being made almost impossible because of Covid.

@Stringsandthings

Has she been referred to occupational health through work? They should recommend reasonable adjustments in the workplace to support DD

She's been twice and nothing came of it. They had some check-in meetings and that's it.

I know you said she wouldn't thrive giving up her job, but hopscotching from one job to another and being off 5 months out of 18 doesn't sound healthy either. Part of the stress for me when I was in that cycle was the expectation from myself and others that, full time job is what I should do and I just couldn't. She should maybe have a think about other options, part time, freelance, maybe her own business where she would have more flexibility as the current full time working doesn't sound like it's working for her either.

Shit like this is infuriating.

1. You missed her autism as a child. She's damaged from years of having to fit in and mask. It's fucking anxiety inducing hard work, it changes how you see yourself. She's smart enough but for three decades she's known that there's something wrong deep inside her on a personality level so she'll be never live up to that potential. It's soul destroying so she hides it. She isn't who you think she is, you're being presented with a facade, only a few people (if any) will know the real her.

1. The world isn't built for autistic people. Nearest analogy I can think of is you trying to do your job whilst treading water.

1. Those pizza boxes and mess and whatever is a sign of her distress, it's not something that is a sign of lack of worth. It's just that life is too fucking hard and by the end of the day she's so done with dealing with neurotypical toxicity that one more trip out to the bin is too much. She's exhausted, stressed and can't deal with one more bullshit "nice weather we're having herp derp" comment whilst it's pissing down with rain. It's not a sign of virtue to have a clean house, it's not a sign of bad character to have a dirty one.

I think she needs to go part time and she needs to know that this is ok.

I'm autistic and I manage fine part time. I struggle full time. I was utterly fed up not working.

You need to a lot more reading on autism in females and learn to be more supportive. Stop focusing on the fact that YOU don't want her to not work and think about what she NEEDS.

There is so much to learn about autism, and maybe your daughter needs some understanding too if her diagnosis is recent. Autism presents in many different ways. It’s often linked with routine/social awkwardness and maybe a gift for something - but actually these don’t always apply.

I remember, when I was pregnant I had a stronger sense of smell. One day I walked past a fishmonger and the smell was so strong my legs wobbled and I was nearly sick in the road. My senses had overwhelmed me. For some autistic people their senses are too strong. Bright lights are crippling, clothes are unbearably itchy or painful, noises that we can ignore will cause massive discomfort. Your daughter may not know specifically what is different for her because she has lived with it all her life. Like colour blind people don’t know they are colour blind until they are tested. The point is that its all absolutely real and usually uncomfortable - like it was for me when I was nearly sick.

Mental health issues and autism go hand in hand. I suspect your daughter will always have known she is different but not exactly known why or how. I suspect she knows when she has done something “wrong” (especially in teen years) but she could never quite understand what that was. Totally demoralising. Like the whole world is gaslighting you. So she will have been pretending to be “normal” for years. The thing is it’s exhausting. And now she has just run out of steam. It’s like she’s run a marathon and now you want her to just get her head down and do another 10 miles. Well, except its another million miles as she will be running that marathon for the rest of her working life.

She cant knuckle down and push through it. She’s done. But because she is exhausted and also depressed perhaps she hasn’t considered some other options like restarting therapy or working part time. What does her wife think? Can you work together to support her and make some changes that will still let her feel valued but give her time to recover?

Please read some more about Autism - there are some great suggestions here.

@Tempbbp I think you are getting a really hard time here. Unfortunately you are probably not going to get much help and will mostly just get abuse from people projecting their anger on to you.

It’s crystal clear to me that you love your daughter and want her to find success in life whatever form that takes.

The hard part here is there is probably little you can do for her except to love her during the good and the bad. As for practical help, I’m afraid that as a grown woman there is not much you can do. She’s going to have to figure out what works and doesn’t work for her.

[quote saltinesandcoffeecups]@Tempbbp I think you are getting a really hard time here. Unfortunately you are probably not going to get much help and will mostly just get abuse from people projecting their anger on to you.

It’s crystal clear to me that you love your daughter and want her to find success in life whatever form that takes.

The hard part here is there is probably little you can do for her except to love her during the good and the bad. As for practical help, I’m afraid that as a grown woman there is not much you can do. She’s going to have to figure out what works and doesn’t work for her.[/quote]
Thank you. Part of it just doesn't make sense to me. If DD was missing a limb for example of course life would be much harder and it would suck, but you'd expect you could get physical therapy and a prosthetic to at least make it as easy as possible for her to get around. I could read up on how hard it is to miss a limb all I want and I would, but ultimately that would not help her to walk. You'd need medical help for that.

From what she says about this there isn't any help available, which screams to me that the healthcare service doesn't think it's a big deal, or just doesn't care. "The world is not really made for you" doesn't fly with me, and I doubt it would go down well with her. It just comes across as another rejection.

@saltinesandcoffeecups OP has had plenty of help from people on this thread! She's advice on things to read up on and study as well as tons of first hand experience from people with autism as well as parents who have children with the condition.

It seems to me that she just doesn't seem to want the face the reality of what autism means for her daughter and unfortunately that's going to cause a huge rift in their relationship if it continues.

Like a PP put it - autism is like trying to do your job while treading water. You can't focus on the job properly because you're constantly struggling to stay afloat. Basic things like noises, smells and sounds can trigger meltdowns but because the vast majority of the world can cope, you pretend you can do but you can't tread water forever.

Eventually something happens and you just have to stop.

From what she says about this there isn't any help available, which screams to me that the healthcare service doesn't think it's a big deal, or just doesn't care. "The world is not really made for you" doesn't fly with me, and I doubt it would go down well with her. It just comes across as another rejection.

Welcome to life with autism, I'm afraid.

The world isn't made for us. That may not "fly with you" (whatever that's supposed to mean) but I'm afraid it's reality. Your daughter is battling every single day precisely because the world is not set up for people with autism.

It's clear you love your daughter but it's also crystal clear that you have absolutely no understanding of what life is like for people with autism. People have tried and tried to tell you and to help you on this thread but their reality and experiences just "don't fly with you".

I think the OP is getting an unwarranted good kicking. For everyone on this thread saying that people with autism all need to be treated as individuals, the rest are piling on saying “do exactly this” which flies in the face of what the OP has seen happen with her own child before.

I don’t see how giving up work will help the OPs daughter, she’ll have worse mental health and no income. Where is the partner in all this? Is it sustainable for her to be working away so much?

Retreating completely from everything is not an option, so there has to be some (supported) degree of interacting with the “normal” world (apologies for the clunky language).

@Meatshake that is the best post I've ever read re Autism. Particularly the bottom comment. It's made me cry. Speaking as a newly diagnosed 34YO female (also Dx with ADHD at the same time).

OP, please visit the website of the PDA society and read some of the resources for parents there. I think it may help. On a practical note, if she needs help taking care of the house, you could offer to pay for extra cleaner visits. Talk to her wife. Try not to give advice. Get some counselling for yourself (role modelling what you want her to do).

I don’t see how giving up work will help the OPs daughter, she’ll have worse mental health and no income.

Nobody has said she should quit and never work again, but very few people with autism can hold down full time jobs. That's just the reality of the condition and it's very much backed up by statistics. Many work part time or run small business simply because it's the only way they can actually cope.

Retreating completely from everything is not an option, so there has to be some (supported) degree of interacting with the “normal” world (apologies for the clunky language).

Again, nobody has suggested that at all. Of course you have to interact with the world but the reality is that there's practically no real life support for adult females with autism, especially not for ones who manage to be fairly independent like OP's DD is. Lots of us are just left to struggle on our own and there's not really much we can do about it except have mechanisms and systems in place to enable us to cope.

There may be more going on here if she is so overwhelmed she isnt showering or keeping the house clean. I have situational anxiety and when I was very ill years ago I was amazed at how quickly the days went when I wasnt doing anything. But i had to get up and get DS to school. I also made sure i had an outside task each day (getting gas etc) and would force myself to get ready.

I think she needs counselling and baby steps. Would she agree to a task each day? Shr can then build up from there. I do understand how worried you are but she needs to want to be well and take steps to get there.

Can you encourage her to engage with her employer's occupational health services? You may need to take practical steps to facilitate this (offer to make the call even, as well as maybe driving her to appointments).

If she engages with OHS there will be private help available to help her return to work that would be difficult to access on the NHS. Her employer will also be obligated to make reasonable adjustments for her to assist her to stay in work.

She is still employed now, take advantage, she will have much more access to help and support than if she were unemployed or in a new role.

Her employer may well be able to offer part time working, and other adjustments as well as providing therapy such as CBT that is very difficult to get on the NHS but can be very effective for anxiety and depression.

It is important that she doesn't quit as that will affect her entitlement to benefits. She should take all the help available and then let her employer go down the ill health dismissal process if she still can't cope with work.

I am autistic and I was diagnosed two years ago. I had a mental health breakdown after diagnosis as the reality that I would never be 'cured' was very difficult to process. Two years on and I have embraced my diagnosis and am a different person. I used to be socialable and outgoing but I now understand that I have a limited amount of energy. I find the spoon theory helps me! Basically I have 20 spoons each day and each task takes up a different amount. So talking on the phone to a family member is about 5 spoons as I don't have to concentrate on my body language. Showering is around 8 as my autistic inertia means it is difficult to get in and then out and remember to wash. Working this out means I plan my time realistically.

I am married and have 3 children. To the outside world I probably seem normal. But the effort that normal life takes is draining. The best thing I did after diagnos was to step back and give my self time. I am in a new job now with a boss who gets female autism and I have the accommodations I need to be able to work.

Look up autistic interia. It will explain the only tidying at the last minute to you. Please remember that female autism is very different to male autism and most autistic advice and help services are tailored to men. I recommend reading "Women and Girls with Autism" by Sarah Hendrick.

Sorry OP, I’ve been considering how to reply to you and not join in the mass kicking, but your last reply sort of infuriated me.

“DD was missing a limb for example of course life would be much harder and it would suck”

Autism means that life is much harder and life “sucks” (as an aspie my life doesn’t suck I actually have a really lovely lovely life) however my life is difficult, even the most mundane things you take for granted stew for me exhausting hard work, difficult to understand.

“but you'd expect you could get physical therapy and a prosthetic to at least make it as easy as possible for her to get around”

You might expect that, but there are many people who have to spend those days and thousends on their own wheelchairs/mobility scooters because apparently they don’t qualify for them, their are people for whom physio, pain killers don’t work, there’s many many many people with physical disabilities who the treatment isn’t a magic cure.

“I could read up on how hard it is to miss a limb all I want and I would,”
But it would help you be a bit more compassionate and not tell her to get up and walk when she physically couldn’t, why don’t you read up about autism and depresssion and understand what physical affects they have on a body. I suggest you have a look at the brain scan of how hard an autistic Brain is working, constantly. It will blow your mind!

“but ultimately that would not help her to walk. You'd need medical help for that”
Wow do you think people get medical intervention and they can magically walk

which screams to me that the healthcare service doesn't think it's a big deal, or just doesn't care

No the health service thinks it’s massive deal however what it screams is that the health service is underfunded and overwhelmed it simply can not process those that need interventions quick enough.

The world is not really made for you" doesn't fly with me, and I doubt it would go down well with her

It might not “fly” with you but the world isn’t set up for anyone but the white middle class able bodied, neurotypical male. Honestly you try experience for just one single day what it’s like to have any disability, not being able to access shops because the doors simply aren’t wide enough to too get your wheelchair in, and if you can having to stare at a shelf until a pleasant stranger notices and asks you what they can reach for you, imagine being unable too tell your doctor your in pain and later finding out you have some preventable terminal illness but because your doctor didn’t know you were in pain it wasn’t investigated, imagine being able cross a road without putting yourself in danger cos your blind, the NAS has a great video about the distress over sensory information causes for people with autism

Most medications make me worse. Therapy hasn’t worked for me either.

I’ve battled this sodding demon all my life. I would love for medications or therapy to work. I’m also off work with anxiety.

The thing that’s so shit about mental health is people often end up blaming the victim.

And l get Access to Work, but my company couldn’t ‘find’ anyone to support me.

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.

My husband was diagnosed with autism a couple of years ago. He is 41. He has had life long depression and anxiety as the demands of this world are not suited to him, or many other autistic people. He is much the way you describe your daughter. He wouldn't even see mess or jobs that need doing, as he is usually (always maybe!) very focused on what he is doing in that moment. We have had a lot of struggles, and to manage that we have adjusted our lives. He needs a job that is flexible, so he can be late and not get in trouble. He makes his hours up or only gets paid for what he does. He also needs part time work, as he cannot cope with full time employment. I have taken on all responsibility for the running of the house and the children. This is the only way he can cope. He does some useful jobs around the house for me too. Maybe your daughter needs to reset her life to what works for her. This is not related to intelligence. My husband is intelligent. It is about coping in a non-autistic world. I don't think you understand and it comes across. But you are trying to understand. So please give it more time before you tell her to get a grip, as hopefully you will come to see how this will never help. I hope your daughter has a supportive wife. It is great that you are trying to learn more about this. Your daughter will not be able to get a grip and change, this is her. She needs to be happy above everything else. I believe suicide in autistic people may be higher due to the pressures of life that they struggle with. I think this is about everyone, and her, accepting how she is and moulding her life around that.

And it totally isn't your fault for missing it, autism was rarely diagnosed back then. There is a lot of catch up now with adults being diagnosed.

@RizzleDrizzle I wasn't suggesting that she would magically be able to walk if she had no leg. I was saying that I'd expect to be able to get an artificial limb made for her so that it would be easier to get around. There's a difference.

People like me get told that you go to hospital or see a doctor if you have an issue, and that they will offer help. My DD is saying that is not the case, so I wanted to see whether that's her perception or whether that's reality. As I've said many times, I don't tell my DD to get a grip. I'm pretty confident she'd stop speaking to me if I did that.

It's very hard for people with autism to get appropriate support with their MH, imo. The usual therapies for depression and anxiety are often ineffective, and there seems to be an almost total absence of specialist MH input for adults with autistic spectrum disorders, at least in my area.

Having said that, autism is a qualifying condition under the DDA and she is therefore entitled to have reasonable adjustments made.

What are her employers doing about adjusting her work patterns/workload/working environment to enable her to return to work and manage the demands of working without jeopardising her MH?