Autistic brother makes it impossible for me

[IAmHereButNotHere]

As title says really.

He’s in a routine and will not break his routine, ever. So he lives with my mum, visits my dad Tuesdays, Thursday and Saturday.

He cannot cope with me being there too, I get in the way, not deliberately but I just talk when he wants quiet so we can’t be there at the same time. And he cannot cope at all with my 7 year old, who I’m a single parent to – just her being there upsets him. He says he likes her but can’t cope with being around her.

He can’t cope if mum goes out outside of his routine, so if she goes out at 10am instead of noon he can’t cope so I can’t go on daytrips with my mum as she also has to be back at a certain time. If she;s not there when he gets back from dads, he gets upset. If she’s there when she’s not supposed to it upsets her.

Mum got a new car the other day and he couldn’t cope with that either, keeps saying it’s not mums car.

I try to understand but it affects my life too. I can’t see my parents when I want to, I can’t ask them to care for my DD unexpectedly, I can’t just pop in when I’m walking passed, my mum can’t just get my DD from school or holiday club as a one off, everything to do with my parents and brother has to be organised down to a tee – my brother cannot cope with my DD being even in his house touching anything so any childcare is at my house and I can’t be a minute late because it upsets my brother.

Because of covid I haven’t seen my dad for over a year. Brother used to only go twice a week but he’s increased it to 3 times. I get weekends off but my dad has a hobby on Sundays with some friends of his who still work so I can’t see him then, I also get Tuesday off but can’t go then due to my brother. If I suggest he doesn’t go one week so I can I get told by my brother that upsetting his routine will upset his rhythm and he may never be the same again, my parents suggest it and get told that they need to consider him over me because of his autism – I sort of agree with that tbh he lives with my mum so should come before me and his AN mean he needs my dad more than me.

I am just moaning here. My whole life revolves around my brother. I love him but I am sick of having to consider him when I want to see either of my parents. I can’t go on holiday with either parent as it upsets my brother so much.

I am lucky I have supportive friends and good childcare options nearby, but I am mourning the relationship I thought I’d have with my parents. My DD barely recognises them.

I know I am VUR and prepared to be told so. Sorry for the rant and sorry if any of my wording is wrong or offensive, I don't mean to be.

Also really shocked that you have made that promise to your mum, or that your mum made you promise that, Rainbow. Supported living isn't the workhouse. It sounds like your sister could be tortured with anxiety and it's only getting worse, whereas professional support might help her have a better life.

[quote user1471457751]@Ponoka7 blind people are perfectly able to cook for themselves. There was a blind contestant on ready steady cook recently. Stop being so disablist[/quote]

Not all blind people. Just as not all autistic people can live independently. It's not even a difficult concept.

@Kanaloa

I’m judging by what the op has written. That’s what mumsnet is. I just posted advice to a tenant too, I’m not her landlord, just judged by what she had written.

I was too harsh on you and I apologise. I'm just frustrated by people not understanding autism. You were just giving your opinion from what you know and trying to help. What I shouldve said to you was that this is how the disability presents and these are the challenges. Its really not the disabled persons fault, they dont have a choice in the matter. The services for autism are terrible unless you pay for it yourself.

YANBU, I have an adult autistic brother and none of us siblings have anything to do with him or our mother because of the way we were treated in childhood/teenage years. I feel sorry for him because my mum has made him so dependent on her and basically caused such resentment that when she dies he will have nobody. I think this one is on your parents I’m afraid, support systems should have been put in place a long time ago. I’m sorry OP.

He can't change his routine but he increased his visits to your dad?

All this advice is good but it's more for OPs parents. The decision is theirs and if they think no changes can or should be made, that's it.

I have a disabled sibling and I have suggested to my parents it would be better for all three of them if we were to help my sister live independently with support (her condition easily allows this). They simply say no. And that's their decision. Who knows, maybe they are wrong and she's missing out, maybe I'm wrong and it's a shit idea.

OP I think your parents are keeping that status quo for a quiet life, and who can blame them I suppose. Nor do I think YABU.

Perhaps it would make it a bit easier to cope if you uncouple the childcare thing though. Many, maybe most people, don't have parents who pick gc up from school etc, whether that be because of ill health/frailty, too busy, living far away, they have died, or just not wanting too. So forget that being part of this problem, it could be unrelated.

Your brother is also a prisoner of the situation. He was diagnosed late and had zero support. As frustrating as his behaviour is, he has developed coping mechanisms that allow him to function. His routines aren’t out of spite or stubbornness, they are a survival mechanism to cope in a world that isn’t set up for his needs.

If things are going to improve, your parents will have to fight and that might mean taking drastic measures to force their local authority to support them. Unfortunately, poor funding and lack of will means if families appear to be coping, they will be left to fend for themselves.

I know it’s of cold comfort but out all your family, you probably have the most freedom. I strongly urge you to really push your parents to push back on their Local Authority and to contact charities to support them.

@Rainbow1378 totally feel for you and your situation. My mum was 90 and showing signs of dementia before anyone would even start talking about future planning for my brother. There are brilliant places out there and help for our disabled siblings, but it needs our parents to get behind the idea. Even now, in her nineties my brother's welfare is the one thought in my mum's mind.

I did some voluntary work in the past and the parents of some disabled children, especially the mother, seem to feel a sort of guilt. This seems to increase their determination to do everything to make their child's life easier - even if it seems to disadvantage the child.

@llmk but it was fine for that poster to say blind people can't cook not some blind people can't cook?

My 22 year old lives in supported accommodation. He has also had help from adult mental health teams to help him cope with his anxiety around change.

My youngest son (20) is also very fixed in his routines. Again, it is not only autism that is the issue here, it is a collection of mental health issues including OCD.

I have made the mistake, especially with respect to my youngest, of trying to prioritise his needs, over my own needs or the needs of the rest of the family. This has had a negative effect on all of us and led to an escalation of my son's difficulties with respect to change.

Could you see if your brother will seek help for the anxiety issues that may be escalating his need for sameness? I agree with you, services for autistic adults are abysmal despite all the government's promises and strategies.

[quote user1471457751]@llmk but it was fine for that poster to say blind people can't cook not some blind people can't cook?[/quote]

No. I'm not sure where you are seeing me saying that is fine? I just responded to the one comment. Please don't make assumptions about my thoughts on other comments.

Its a very sad situation and you must feel very upset to be missing out. I do think you need to explain how yow feel to both parents and also start the 'what hapoens when you are too old' conversation.

But I do have sympathy for your parents too. There is very little help out there for parents when its needed. I have a son who is 'violent and challenging' and it can be scary and I am a human that makes mistakes sometimes trying to juggle things.

@Rainbow1378 don't promise to look after your sister yourself.

@GreatAuntEmily

I did some voluntary work in the past and the parents of some disabled children, especially the mother, seem to feel a sort of guilt. This seems to increase their determination to do everything to make their child's life easier - even if it seems to disadvantage the child.

Big old sweeping judgement you've made there.

[quote welcome2021]@Rainbow1378 totally feel for you and your situation. My mum was 90 and showing signs of dementia before anyone would even start talking about future planning for my brother. There are brilliant places out there and help for our disabled siblings, but it needs our parents to get behind the idea. Even now, in her nineties my brother's welfare is the one thought in my mum's mind.[/quote]
I read your posts and I couldn't believe some of the stuff you wrote was so similar, in this situation I literally feel as though I'm totally alone. Although I am so sorry to hear your mum is having a difficult time too.
It's always on my mind, it makes me feel so low to think about God forbid if anything was to happen, I don't want to be in the same situation and be put through what my mum has been but i don't know how to not be, and I have 2 LOs as well. I just don't know how I would even start that conversation with my mum and I don't know why supported living has always been her fear.
She gets absolutely no respite, my sister rules her day from the moment she wakes up- she has to follow her orders and do the routine (even my mums routine of when she can make coffee or have a shower) if she doesn't follow it she can get screamed at for hours, I know my mum is doing it wrong, but I can't explain how difficult it is for her not to do it.
It's also a nightmare to get her to wash, she just refuses to wash and my mum can't get her to, so every Saturday I go there and wash her because she seems to listen to me with the washing.
She also doesn't accept my mum to own anything by herself, for example if my mum has something, it needs to be recognised in my sisters eyes as belonging to both of them not just my mum.
My mum is also not allowed to sit anywhere on her own, my sister tells her where to sit and has to sit with her.
Thank you for replying to me and reaching out, it's a comfort knowing I'm not completely alone.
Has your mum spoken to you about what would happen if God forbid anything happened? Does she expect you to care for him?

[quote RedHelenB]@Rainbow1378 don't promise to look after your sister yourself.[/quote]
I wish it was that simple, I just don't know how to start that conversation and I don't want to disappoint or worry my mum. She's been through a lot and has a lot of health issues.

@welcome2021

@RedHelenB

Sorry wasn't sure how to reply by tagging . Responses below

@Gab2

I haven't no, will have a look at it though. I have contacted numerous psychiatrists in the past, none of them have been able to help because my sister refuses to communicate with them.

I think it's very important for people to openly discuss this, and share information. Posters roaring about disablism and no doubt reporting the thread are not just unkind, but potentially thwarting someone getting help, especially for aged parents.

I was a sibling who was always second. Dsis wasn't diagnosed, but lived a life on the edge of violent rage and terrible jealousies over.... anything. In order to preserve a semblance of peace, dsis had to be deferred to in all things. I agree with a poster upthread, I was taught to be a people pleaser to the extreme. Always put yourself last. Never eat what you want to eat, always let everyone go first, never win a game, never be proud of yourself, always put yourself down...

I'm In a similar position to you @Rainbow1378, except for the fact my brother is mostly quiet and passive unless something frightens him, and that I don't participate in his care.

My parents keep putting off looking into supported living because "he doesn't want to leave home", but they're in their late 70's and this just cannot go on indefinitely. I don't think it's entirely guilt. I suspect it's also control, because I think my mother is also on the spectrum.

I can't and won't look after my brother. I am too far away for it to work practically, and actually I don't want to. It would be terrible for any relationship we had. This conversation has been had many times. It used to begin with my mother recounting my brother's latest difficulties, and I would follow it up with asking what they planned to do about his living arrangements. Sadly, I have had to go NC in the hope that it hammers home the fact it's not fair to just die on my brother and leave him dealing with bereavement and a massive change in circumstances at the same time. Also that it's not fair to assume I can deal with that as an emergency from a distance.

I second that you shouldn't agree to look after your sister. It's not your job and you may not even be the best option for her.

As for the OP, I agree that the brother can change when it suits him, as can mine, so he has to get gradually used to the idea that he has to change when things are non-negotiable for other people. His needs might usually come first, but they cannot also come second, third and last for the family to function.

@AngeloMysterioso

I now have an autistic child myself so I now understand where my mum has been coming from all these years, because I have to put his needs first, even above his twin's and even if it makes life harder for everyone else.

Speaking as the NT child (although not a twin) in this scenario, I’m sorry but this is a disastrous approach to take. By always putting your other child second, all you are doing is setting them up for their own issues in adulthood and a shit relationship with you. I now as an adult am absolutely shit at communicating my problems to others, I bury things until they reach unsustainable levels because all my life it was made very clear to me that my wants, my needs and my problems were always going to be overridden by those of my sibling and I was simply less important, so there was no point talking about what I was going through or asking for help. This has had very serious consequences for me in a number of different ways.

This message is very important to all parents - regardless of SN etc.

My sister was always domineering and I was passive.

I'm the same re not being able to communicate my feelings because I was programmed to be second (well third actually because I also had an even younger sibling)

Everyone deserves attention, love and care.

We are fighting for equality but it cannot be at the detriment to others. True equality is equality for all.

"My mum is also terrified of her going into supported living so I have promised to take care of her". Why is your mum terrified of this? Your sister will learn independence skills there and she will be happier than at home.. Perhaps the mother has seen what supported living looks like and doesn’t think she’ll be happier than at home or develop.
Your mum is too old to be dealing with the severity of these issues and really not fair to ask you to take over. many seventy year old women are the backbone of their families supporting the lives of relatives and friends.
Your sister is an adult now and needs these independence skills and her own life really. She wont be locked away and you'll be able to have days where you can all go out to lunch etc. She'll feel like a proper wee woman and will love it. She may “need” all sorts of skills she can’t have it won’t make the slightest difference. I meet large numbers of disabled adult out and about with their carer and I can assure you that many of them aren’t happy or well supported. There are good set ups but they tend to be those that support people to stay more involved with family than the occasional lunch out . Many people don’t respond well to the life you seem to think suits all the disabled ones. Read some boarding school survivors threads and imagine if it was forever, with less funding, and less emotional resilience.

OP what can you do to help your brother, and what can you do to help your parents? You seem to see yourself as the victim in this scenario, I honestly think your mother has shouldered so much for you to be relatively free of it all.

@Bogeyes

He can't change his routine but he increased his visits to your dad?

It's a misunderstood myth about the 'not being able to change routine' for people with autism.

The routine they require is to help them manage the executive function deficits quite often and help control the anxiety that can manafiest alongside autism.

The anxiety is often from not being able to read people. So if you do the same thing the same time each day you are likely to come across the same people, you learn about them and create a routine about how you communicate with them etc.

So with him changing his routine - it's because it's possible. He's decided that he wants to do 3 visits and so he's in control. Those 3 visits could easily have been different days with some support to understand that his routine also needs to take into account the needs of others. It's the understanding of others thoughts feelings and emotions that's generally another area that's struggled with.

You often find that some autistic people cannot tolerate noise - unless they're making it!

You have 2 viewpoints on this. Should those around them keep quiet? No - because they have a right to a life. Should the autistic person avoid places they cannot deal with - well yes on the whole.

But the better solution is somewhere in the middle. Give them a chance to experience somewhere they find difficult if that's what they want and make the environment accessible for them initially. Then build up.

The o,portent thing is not to enforce a situation that's difficult. So with my ds he will join in family meals but if he needs to leave when eaten we leave. If he needs to get up and go outside for some space then he goes - and the important bit is he goes without others judgement or making comments.

I hate crowds etc (now! - loved nightclubs etc as a teen!). So I don't go to them. I don't go and expect others to give me space because playing human pinball machine causes me stress!

Of course you’re not BU. Sadly, neurotypical siblings often have to take a backseat. Tough as an adult, even more difficult as a child.