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.

I don't think you are unreasonable at all OP.

Sounds very tough not to be able to go to your parents when you need to.

My cousin has autism and my other cousin has found it hard too. She has learnt to get on with everything by herself, never having any kind of parental support really, moved out when she was only 16. Whilst grateful that she doesn't have a disability, I think she definitely does find the situation and her sibling by default annoying. I don't think it makes anyone a bad person for thinking this in the circumstances.

And yes, she and the OP don't have a disability but not everything is a race to the bottom. It sucks that by the sounds of it OP also doesn't have any parental support due to her brothers condition.

I dont have any particular advice but just letting you know you're not alone.

I'm in pretty much the exact same situation right down to me and my DD not being allowed to be in my brothers presence as it causes him extreme distress and he gets violent under stress. My parents lives revolve around caring for him 24/7. Its utterly shit for everyone involved.

Growing up and living with someone with severe Autism and having your life revolve around them is a bitter pill to swallow. In terms of the childcare I would just write your parents off on that one. Even if my mum or dad did have a spare evening or afternoon to help with childcare I just cant bring myself to ask as I know they have such a shit existence looking after my brother I dont then want to lumber them with my kid on a precious free moment they rarely get to themselves. Ive just had to build up my own network for things like emergency childcare

Sorry I dont have any helpful advice. Its actually really good to know that I'm not the only one in the same situation.

@toconclude

Also *@llmk* How about you bloody check yourself and quit telling people their situation is not what it is because you don't want to hear it? No-one forced you to read this thread.

I have not told anybody about their situation.

So what's your solution? "NT people suck it up, you simply don't matter?"

Goodness no, not at all. There has to be a level of understanding though and 'he will have to cope' isn't really it.

@daytriptovulcan

He sounds like a bit of a bully, but it's being allowed because of his condition. I agree that's really unsatisfactory.

How much do you actually know about autism?

@Eggfriedpower

never said I'm never annoying.

I'm saying it seems acceptable on here to insult someone based on their neurological disability, but not their physical disability.

I don't need to say my sister is annoying because of a physical disability. Because she doesn't have one.

However if a sibling of a physically disabled person said they were annoyed / frustrated etc because of a their siblings physical disability, that would be fine too.

I imagine the constraints of a physical disability could be annoying, both for the person and their immediate family. You might feel annoyed if parents are paying more attention to the disabled child- valid feeling. You might feel annoyed because on a weekend you want to go rock climbing but can't because your disabled sibling would be left out. Again this is valid.

it is perfectly acceptable to express annoyance about a family member for any reason. You can love them, and know it's not their fault in any way. But it's still annoying!

I actually think it's fine to feel annoyed and frustrated because of almost anything in your life. Because if that's how you feel that is valid.

I know I'm going on now, but the expectation that siblings of disabled children should be endlessly good and patient and understanding is extremely harmful for the siblings. It sets their expectation at an unrealistically high standard, which they can never achieve.

What was your brother like before 10/15/20 before and after diagnosis?

My ds is autistic and I find that he goes through phases where he's 'more autistic' than other times. Sometimes this is because people say he'll struggle with X and due to his literal thinking he thinks he will, so does, or he doesn't try and cope because he just thinks he won't.

It's not easy but we get there. I explain to him that everyone struggles and gets overwhelmed. Everyone wants to shout at people at times or stay on bed all day. The difference between nt and autism is it's easier when nt to overcome that. But that doesn't mean it's impossible to overcome it because he's autistic.

It's harder and he needs more rest days to recover. But he can and will recover and it will get easier and he will find another routine that fits in new demands.

The person who said above about your mum saying "I normally go out at 10 but tomorrow I'll be leaving at 9.30 and back at normal time" is right. He needs to see that change in routine doesn't end in automatic disaster. This could only be weekly at first until he managed to cope with that and then add something else.

Just feels prudent to drop this in here right now

Hear yourself and check yourself. Lots of autistic adults can never live independently
Living independently can mean “with state support” or even “in an institution”. But there has to be some arrangement in place so he can live without depending on parents who will die decades before him.

I don’t think op is being unfair at all, and it’s not being suggested that her brother shouldn’t be supported. But just because someone has a disability doesn’t mean their wants and needs suddenly take priority over the rights of others.

So for example, my son does not like going to places it might be noisy/busy. To mitigate this I would never tell my other three children we have to stay home at all times because their brother is autistic and won’t like it. Instead, I buy my son ear guards, and DH shows him pictures of where we are going beforehand on the computer so it is not totally unfamiliar. When we were going to the cinema we put up our blackout curtains and ‘practiced’ what it would be like watching tv in the dark and quiet! To me, my son’s condition means I have to help him learn to interact with the world, I wouldn’t be doing him any favours if I let his disability control his life and that of his siblings to this extent.

He can't cope - he shouts and can be quite scary with it, he stops washing (washing is part of his routine so he does it) he stops eating he has been known to lock himself in his room and refuse to talk to anyone, mum had to get the fire brigade out when he did it once as he'd been in there for 3 days, he doesn't have an ensuite so she wanted him out.

Has he always done this? Or just since his diagnosis or a short while prior to? I honestly think he is using his autism to control everyone a bit more than he needs. There's needs and there's wants. I think he wants everyone to follow the routine he prefers, and is acting like he needs it because of his autism to get his own way.

Like only visiting his dad twice a week so you can visit once a week. He doesn't need to visit his dad three times, he wants to.

If he needs a reliable routine, then that's fine. But his routine doesn't have to be exactly what he wants, part of his routine should be also considering you and your relationship with your parents. His autism doesn't make him more important than you. Coming from an autistic that has been through the need for strict routine. Funnily enough, moving out of my parents actually made me feel less like that, it's a way of controlling an environment that you don't feel in control of, which I didn't feel as much need to do once my environment was my own. If that makes sense?

@Paulinna

Hear yourself and check yourself. Lots of autistic adults can never live independently Living independently can mean “with state support” or even “in an institution”. But there has to be some arrangement in place so he can live without depending on parents who will die decades before him.

As the parent of an autistic child it's really quite upsetting to repeatedly read how I am 'going to die decades' before my child. Of course I know this but do I really need to read it over and over? Come on guys, have a little consideration.

@Kanaloa that's awesome ways of helping him prepare for things, I do those things myself and it really does make so much difference. Studying menus of restaurants and maps of shopping centres and things beforehand also really helps me, just ideas :)

It's easy for me to say this, as I'm not in this situation, but I feel that you need to do some research into Autism.

It isn't that your brother is 'trying to be awkward' maybe you should get in touch with The National Autistic Society, they are fantastic and I'm sure could offer some advise.

[quote Cuddlyrottweiler]@Kanaloa that's awesome ways of helping him prepare for things, I do those things myself and it really does make so much difference. Studying menus of restaurants and maps of shopping centres and things beforehand also really helps me, just ideas :)[/quote]
Putting the work in really does real the benefits.

I don't think the wheelchair analogy works as a standalone. A sibling in a wheelchair who requires care is not the same as this situation. A more accurate example would be a sibling who requires a wheelchair to move around but refuses to use one, insisting on staying in bed, with parents bringing chamber pots, doing all cleaning, cooking and personal care.

A sibling in a wheelchair who needs normal accommodations - eg in living arrangements, in planning activities, in support re work, in transport is very different to a sibling who needs a wheelchair but refuses to learn how to use one.

OP's brother clearly has a significant disability, but nothing I've ever read or seen regarding autism suggests that the person can only function if every single one of their needs is met 100% to their preferred level. In fact, I have always understood that conditions such as autism, and the support provided for autistic children, is about helping them to function as much as possible within the framework of the world they're in. DD has two autistic children in her class and she does come home talking about how one or the other had a meltdown because of x or y, but I know a key part of the work the school and their parents are doing is helping them to manage that.

As the parent of an autistic child it's really quite upsetting to repeatedly read how I am 'going to die decades' before my child. Of course I know this but do I really need to read it over and over? Come on guys, have a little consideration.

But it's the truth of it though, isn't it? It's an unpleasant one but it's something that the family need to be thinking about (and sooner rather than later because you never know what's coming around the corner). People would be doing OP a disservice to not mention it.

@SionnachRua

As the parent of an autistic child it's really quite upsetting to repeatedly read how I am 'going to die decades' before my child. Of course I know this but do I really need to read it over and over? Come on guys, have a little consideration.

But it's the truth of it though, isn't it? It's an unpleasant one but it's something that the family need to be thinking about (and sooner rather than later because you never know what's coming around the corner). People would be doing OP a disservice to not mention it.

I'm not denying it's the truth. I'm saying that living with that truth is painful.

[quote Cuddlyrottweiler]@Kanaloa that's awesome ways of helping him prepare for things, I do those things myself and it really does make so much difference. Studying menus of restaurants and maps of shopping centres and things beforehand also really helps me, just ideas :)[/quote]
Thank you! They are not all my ideas but also his classroom helper who has been like a fountain of knowledge.

Love the idea of checking menus beforehand, right now we make sandwiches to take because he rejects most things, but possibly if he could see everything on offer and decide before then he would try them. He actually does like trying things, but we always say he’s like a new fish, you need to let the bag sit in the water for a bit!

I'm not denying it's the truth. I'm saying that living with that truth is painful.

I completely get that but I think if the thread topic is distressing you, it's on you to exit the thread (this is meant in the kindest way possible). Of course it's horrible to think about what could lie ahead but it seems like it's an area OP's family haven't explored yet. And for those of us with autistic siblings - seems like there's a lot of us here - it's something that doesn't get spoken about much and it's an important topic.

@SionnachRua

I'm not denying it's the truth. I'm saying that living with that truth is painful.

I completely get that but I think if the thread topic is distressing you, it's on you to exit the thread (this is meant in the kindest way possible). Of course it's horrible to think about what could lie ahead but it seems like it's an area OP's family haven't explored yet. And for those of us with autistic siblings - seems like there's a lot of us here - it's something that doesn't get spoken about much and it's an important topic.

Nice.

I think the best thing parents can do for their disabled children is to investigate and promote independent living. My mother putting her head firmly in the sand and giving into my brother's every demand has done nobody any favours in this family. My brother has had an isolated and miserable life where his only daily activity has been controlling my mother and the house. My sister moved away and never visits because my brother doesn't like his routine disturbed. I've spent 30 years worrying about the situation, keeping my children safe from him and being sad and annoyed at the same time.

@Triffid1

I don't think the wheelchair analogy works as a standalone. A sibling in a wheelchair who requires care is not the same as this situation. A more accurate example would be a sibling who requires a wheelchair to move around but refuses to use one, insisting on staying in bed, with parents bringing chamber pots, doing all cleaning, cooking and personal care.

A sibling in a wheelchair who needs normal accommodations - eg in living arrangements, in planning activities, in support re work, in transport is very different to a sibling who needs a wheelchair but refuses to learn how to use one.

OP's brother clearly has a significant disability, but nothing I've ever read or seen regarding autism suggests that the person can only function if every single one of their needs is met 100% to their preferred level. In fact, I have always understood that conditions such as autism, and the support provided for autistic children, is about helping them to function as much as possible within the framework of the world they're in. DD has two autistic children in her class and she does come home talking about how one or the other had a meltdown because of x or y, but I know a key part of the work the school and their parents are doing is helping them to manage that.

Well if your daughter knows two autistic people, you must be an expert.

If he can't cope, I don't see how that's the same as refusing to use a wheelchair.

Don't get me started on the wheelchair analogy I've just read. It shows that the world has a very very long way to come with understanding autism, which just depresses me immensely.

You've got this so wrong.

Try imagining it this way... the wheelchair user DOESN'T KNOW that using the wheelchair will help them. They can't see how it would help them because they have been managing fine without it. They are terrified of using the wheelchair. Every time the wheelchair is mentioned or brought out they become so stressed and upset that they have physical reactions to it.

Or maybe just don't even try to analogise and make up bullshit comparisons between one type of disability and another.