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.

It’s pretty shit for you, your parents and your brother. Lots of people wish their lives were different. Your parents could behave differently as could your brother as could you.

Also, look into PDA to see if it rings any bells.

SS probably arent helping as they don’t have to. Sometimes your parents have to threaten to stop caring to get any kind of help. It will be hard and stressful for you all but might work in the long run. Fact is social services could fund for him to live elsewhere with support but they are over stretched so if your parents don’t say they can’t carry on then they won’t do anything. It might be worth it, I don’t mean to sound flippant as it will be so hard but it needs to be done at some point or else it will just continue until your parents are frail. It’s hard for carers to say ‘I’m not doing this’ but it’s the only way to get help

@Diverseopinions I know our local social services 15 years ago would grant whatever disabled people wanted (obviously within reason). It was amazing and disabled people were given the help they needed not just for basic needs but things that enhanced their quality of life and that most people take for granted. They are now in so much debt people are lucky to get even their most basic needs met :(

@FrenchBoule

A while ago there was a thread on MN about people who have disabled siblings. The amount of resentment and sometimes bitterness towards the parents was shocking.

Some things in life make sense after several years.

I have 2 kids,younger with ASD and the older one is NT.
Emotional and physical needs of one child don’t trump another’s

OP, your parents are very unfair to you. They have 2 children,not just 1.
If your brother managed to change from 2 to 3 days I’d say he manages change when it suits him effectively elbowing you out of your family of origin.

Speak to your parents- either they will manage to carve out some time for you and manage your brother’s unreasonable and manipulative demands or just back off completely as you’re literally left out with no other options to see your parents.

Honestly fuck off. It's not shocking that a child who doesn't have any of their needs met because of their sibling harbours some bitterness. No matter what happens in their life , no matter what support is required they are always second.

Just read the rest of your post. Your latter doesn't fit with the first paragraph, so it's not at you, just the parents who expect the sibling to cope

You're not unreasonable but it is no doubt painful for your parents too.

Talk to your mum and dad about how you and your daughter feel and see if there are gentle ways in which you can stretch them time you spend together.

Do you know any golfers? (if it is indeed golf)

Yes.

And everyone should be entitled to some time for doing their hobby and seeing friends too.

Which is why I said occasionally. Not suggesting he forfeits his hobby entirely but that occasionally he could prioritise the child he hasn’t seen for a year.

@Sowingbees I think you misunderstood me.

The thread I mentioned was in Chat a few years ago so it disappeared.

I was not surprised that people with disabled siblings had resentment towards their parents when they always came second and the were expected at some point in life take over caring duties.

This is what OP’s parents are doing to her by placating her brother all the time.

What is going to happen,how the brother is going to manage if mum has a GP appointment before 12pm or the other medical treatment out of the time she’s “allowed” to go out?
OP’s parents opt for an easy life placating the brother and further pushing OP’s away.

What I was trying to say was that the change is unavoidable and should be introduced gradually.

Every person with autism is different but I’m not sure if OP’s brother demands are caused by his condition or not?

He managed the change when it suited him to further detriment to OP.

I had to implement changes for my ASD son. He doesn’t like them sometimes,he’s upset and very vocal about it (he’s 7 and non verbal but with some understanding).

I had to do it for the sake of my other son who can’t live his life up to his brother whims and demands.

It sucks. Constant juggling and reasoning.

Don’t tell me to fuck off.

Life is hard already.
I do whatever I can to give my kids possible best childhood.Both of them because I can’t sacrifice one for the sake of another.

I’m trying to be fair.

The father who won’t give you time on a Sunday is blameless while the mother caring daily with her adult disabled son is framed as unfair and the disabled man is expected to just miraculously get over his difficulties.

Haven't read the full thread.

I was wondering if there was any chance of DB staying over at his DF's - that way Mum gets a break and you get a chance to spend a day with her. It could be proposed as being an arrangement to benefit DB in the case of Mum being ill, needing to go into hospital or similar.

Does he have interests or hobbies?

Agree with everything @itsgettingwierd has been saying. This idea that because someone is disabled means that everyone else must suffer, particularly when it's clear that the person in this case can when necessary, make at least some changes, is astounding. Her parents are carers whose lives are completely controlled by someone else with zero respite. OP's brother appears unwilling to even try any shifts in behaviour. I am not unsympathetic to how difficult things are for him or that some things may well be impossible forever, but that doesn't mean no efforts should be made for relief for the rest of the family.

@Eggfriedpower

I wonder if people talking about people with physical disabilities in this way would be allowed? Calling a relative fucking annoying because they can't walk?

I agree, some of the comments here are horrible and ignorant. Most people here seem to think that autism is an act or a choice ffs.

Autism isn’t a choice but it doesn’t entitle you to control other people’s lives and behave badly towards them. Of course someone with autism might need extra support to understand why people are behaving in a certain way/to cope with changes in their life, but that should never allow them to dictate others’ lives in this way.

@SpaceOp

Agree with everything *@itsgettingwierd has been saying. This idea that because someone is disabled means that everyone else must suffer, particularly when it's clear that the person in this case can* when necessary, make at least some changes, is astounding. Her parents are carers whose lives are completely controlled by someone else with zero respite. OP's brother appears unwilling to even try any shifts in behaviour. I am not unsympathetic to how difficult things are for him or that some things may well be impossible forever, but that doesn't mean no efforts should be made for relief for the rest of the family.

Her parents live separately and im guessing the three days a week visit to the father is there to give the mother a break. The brother you take up a hobby or a class a few days a week too. The changes in his routine have to suit him, that's kind of the point. Autism is a very complex disability and he's not doing it deliberately, he can't help it any more than a wheelchair user cant walk. It may be difficult for people like you to understand but it is possible for parents of disabled kids to enjoy time with their kids, the way you talk make it sound as though every minute with our kids is agony.

I have an adult autistic sister, the things that we go through is too long to write on here, but I just wanted to say you are not alone. My sister is also very into her set routine and if anything changes she gets very very angry. She lives with my mum and controls my mum as though she is her possession and the controlling behaviour has gotten worse every year. It's come to the point where my mum can't even have a conversation with someone else/ we can't call my mum without hearing her shout to hang up in the background. My mum is 71 and literally cares for her 24/7. My mum can't even go to the toilet alone. Sometimes I feel so alone, like no one can ever truly understand because she is so difficult but I know that's not true. My mum is also terrified of her going into supported living so I have promised to take care of her. I feel very alone though, because there's no one I can really speak to about it in RL and I worry about her continuing to get worse and not being able to be able to cope. She also has severe OCD/ especially when it comes to words. We have to repeat every sentence about a million times to correct ourselves in the way she wants.
Sorry no real advice, but just wanted you to know you aren't alone. I am still trying to seek help from SS after years of contacting every one I could think of for help.

@Kanaloa

Autism isn’t a choice but it doesn’t entitle you to control other people’s lives and behave badly towards them. Of course someone with autism might need extra support to understand why people are behaving in a certain way/to cope with changes in their life, but that should never allow them to dictate others’ lives in this way.

It doesn't entitle them but they are reliant on this assistance. Their behaviour surrounding this is out of fear because they are so dependent on others to make their lives bearable. Would you say the same to someone physical disability? Would you shame them on being reliant on others? The same anger is directed toward elderly people with dementia and Alzheimer's. They don't dictate any more than any other person with a disability.

@Rainbow1378

I have an adult autistic sister, the things that we go through is too long to write on here, but I just wanted to say you are not alone. My sister is also very into her set routine and if anything changes she gets very very angry. She lives with my mum and controls my mum as though she is her possession and the controlling behaviour has gotten worse every year. It's come to the point where my mum can't even have a conversation with someone else/ we can't call my mum without hearing her shout to hang up in the background. My mum is 71 and literally cares for her 24/7. My mum can't even go to the toilet alone. Sometimes I feel so alone, like no one can ever truly understand because she is so difficult but I know that's not true. My mum is also terrified of her going into supported living so I have promised to take care of her. I feel very alone though, because there's no one I can really speak to about it in RL and I worry about her continuing to get worse and not being able to be able to cope. She also has severe OCD/ especially when it comes to words. We have to repeat every sentence about a million times to correct ourselves in the way she wants. Sorry no real advice, but just wanted you to know you aren't alone. I am still trying to seek help from SS after years of contacting every one I could think of for help.

Have you tried applied behaviour analysis? If you contact jane mccready from from aba4all on facebook she'll put you in touch with a service provider who has a great reputation. Theres also ambitious about autism. They have a school/college, I believe, and take in adults.

I wouldn’t shame a physically disabled person for requiring assistance, but I would also expect them to consider other people’s needs and wants.

I’m not suggesting op’s brother shouldn’t be supported, but it isn’t acceptable that he should control family members. It’s better - for him as well as his parents - if he is supported with learning skills to help him cope better. And of course autistic people on a whole don’t dictate more than people with any other disability, but this particular disabled person is.

And I actually haven’t ‘shamed’ anyone. I’ve only said that in my own experience it’s better to support someone to cope with the parts of life they find difficult.

"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. Your mum is too old to be dealing with the severity of these issues and really not fair to ask you to take over. 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.

@Kanaloa

I wouldn’t shame a physically disabled person for requiring assistance, but I would also expect them to consider other people’s needs and wants.

I’m not suggesting op’s brother shouldn’t be supported, but it isn’t acceptable that he should control family members. It’s better - for him as well as his parents - if he is supported with learning skills to help him cope better. And of course autistic people on a whole don’t dictate more than people with any other disability, but this particular disabled person is.

How do you know "this particular disabled person" is dictating? Have you met him? Are you his doctor?

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.

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

Oh OP, what an awful situation.
I agree with those saying SS won't help until your poor mother says she can't cope anymore. She literally needs to ring them, ask to speak to the duty officer and tell them she is at crisis point and cannot carry on.Then they have a duty to act.
Trouble is she might not be able to do that.
I once saw a woman of 92 still locked in to caring for her autistic DD who was in her late 60s. She had suddenly realised that she wouldn't be around forever and needed to sort out alternative care for her DD. The sad thing is, had she done that several decades before, life might have been much better for both of them.

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.