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.

"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.

So what happens when the mother dies?

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.

So what happens when the mother dies?

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 shock. 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.

So what happens when the mother dies?

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.

I'm not taking my brother on, for his own sake as much as mine, and nor should the OP. Fuck that, and fuck the implicit guilt tripping of siblings like us.

@Rainbow1378 I'm sorry your family are in this situation. I was told from a young child that my parents had me so I could look after my brother one day. My mum is a very, very nice person, very placid and loving and when dad died early she and my brother were left together in the family house. At the time I suggested that it would be a good idea for him to move to independent living. Because of the work I did at the time I knew of several really brilliant schemes that I thought would help him blossom (he was early thirties then). Mum wouldn't have it. She has always had an aversion to him having any contact with other learning disabled people.

As the years and decades have gone on I've repeatedly asked about what would happen when she dies. Her plan was that he will continue living in the house with 'a nice lady' moving in to look after him. She's always told other people that I will look after him, although I have told her directly and repeatedly that I won't be doing that. It's only recently that I've understood that I've been manipulated by guilt for all these years into colluding with the situation. Neither of them are happy. Neither has had a good life living under my brother's rules. Mum very nearly died ten years ago as she was ill, needed an urgent operation and was too frightened to upset my brother to call an ambulance. Had it not been for a neighbour popping in and insisting whilst my brother screamed and shouted she wouldn't be here now.

Things changed this year when a new social worker became involved and my mother's dementia became worse. It's clear mum won't live much longer, and if she does she probably won't know who my brother is, so plans are finally being made for him to move to independent living - and he seems to like the idea.

My advise is to say no and mean it. I worked part time for 30 years, never having a career because I was supporting my mum. My brother living at home was not the best thing for him or her.

I gave 2 ND Dc and one NT. One if my ND boys would absolutely control the entire family unit at all times given the chance. I know he is not being naughty or selfish - it makes him feel safe but I cannot let him think it is possible or acceptable as it makes life intolerable for his siblings. But I can see how your parents have got to this point as the daily grind of fighting against him in this is utterly exhausting. I would suggest that you with plenty of preparation and warning change his day and when he kicks off you keep reiterating he coped with changing his days when HE wanted to. Yes it is going to be hard but he is behaving badly as well as struggling with his autism.

"Perhaps the mother has seen what supported living looks like and doesn’t think she’ll be happier than at home or develop."

But the mother won't live forever and even if the move isn't happening yet then plans need to made and the necessary coping skills beginning to be put in place.

And I have a severely disabled teenager so I know the feelings associated with thinking about that move.

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.

Why is this the responsibility of the OP?

Its ok to say "no" without a massive guilt trip.

If you have no relationship with your other children because of the demands of one, even if they have learning disabilities the situation is out of control and the parents are not handling it well. Thus needs to be recognised as problematic and deeply unhealthy for all parties.

This concept of enforced guilt isn't ok. Its coercive and manipulative.

Its one thing for someone autistic who doesn't understand to be difficult. Its another for some third party on the internet to be spouting off about what a sibling / parent should or shouldn't be doing because the autistic person is more important. Its not true. Carers and relatives need and have the right to their own good mental health. Its hard enough dealing with the situation they have without some balloon coming in and adding their pennies worth of guilt making.

The fact the mother hasn't said no, and just has taken it all on above and beyond the level she should because of the abusive behaviour she endures if she doesn't, isn't something that should be shared and not tackled.

The whole point is that a lack of management and teaching coping strategies / having aquedate support when its clearly desparately needed.

The whole guilt thing lets social services off the hook. Indeed social services seem to actively encourage it.

All this does is set up an autistic person to an exceptionally traumatic scenario when the parents die. We never hear about this. For obvious reasons. Thats never in the best interests of the person concerned.

If supported living isnt good in quality then it should be improved. Hiding the problem away unseen in people's homes doesn't help that and there isn't any real oversight into these domestic situations and whether they are healthy for all those concerned.

We have a number of posters here explicitly detailing domestic abuse as part of the dynamic it creates. This is being dismissed and minimised as 'just something you have to suck up' as a carer.

This is not ok.

Don't be part of the problem by trying to shove it back into the closet as a problem that must be dealt with by family members only even if its harmful. The accusations of disablism of this thread are utter appalling because all it does it remove public awareness and reduce support for better services and support for families who clearly need it desperately.

Unless you have the conversation that autistic people need to be actively guided and supported through change even if they don't like it and find it distressing and this is a normal thing that has to be dealt with sensitively as part of their care, then they will always be set up to eventually have a situation of massive change, no preparation and no real support to get through it which will be even more traumatic and possibly will leave them vulnerable to various harms they wouldn't otherwise had.

Honestly the denail of reality that parents don't live forever and will reach a point where they are no longer able to care adequately is actually a scandal. It should be viewed as such.

The mantra that autistic people dont understand just doesn't cut it because they don't live in isolation or a magic immortality bubble.

@TheNestedIf I'm not taking my brother on, for his own sake as much as mine, and nor should the OP. Fuck that, and fuck the implicit guilt tripping of siblings like us. that’s fine (so long as you are not pretending you will). I don’t see any guilt tripping. Families don’t all work in the same way. Some are more a support net and some more of a spring board (and some something to run hard away from). The assumption that ALL autistics who can’t live independently are best living in supported living or institutions, is AS offensive as the idea all should live in the parental home. It’s like saying all children would be happier at boarding school or all babies should be in nursery.

@5zeds

"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.

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.

Op (and those in similar situations) if you do take anything from this thread, please do NOT let any of it be the horrific guilt tripping in this post!

[quote 5zeds]**@TheNestedIf* I'm not taking my brother on, for his own sake as much as mine, and nor should the OP. Fuck that, and fuck the implicit guilt tripping of siblings like us.* that’s fine (so long as you are not pretending you will). I don’t see any guilt tripping. Families don’t all work in the same way. Some are more a support net and some more of a spring board (and some something to run hard away from). The assumption that ALL autistics who can’t live independently are best living in supported living or institutions, is AS offensive as the idea all should live in the parental home. It’s like saying all children would be happier at boarding school or all babies should be in nursery.[/quote]
Babies grow up and become independent.

Autistic adults and their parents carers have the opposite problem with aging.

Keep ignoring the crisis this creates by using the offense card if you want.

Still doesn't stop people getting old and dying. And social services having to come in and deal with the fall out. And probably not in a nice way if the autistic person is distressed and threatening staff. Not forgetting they don't have the comfort and advocacy of their parent there to help them through that situation if it had been confronted earlier.

Reality doesn't feel offense.

I’m sorry @RedToothBrush I don’t understand your post. It sounds like you are saying no family should be allowed to live in an “extended family”??? Why? It’s not a criticism of how your family works or how you think it might work with similar members, any more than choosing to be a SAHM means you think everyone should be.

that’s fine (so long as you are not pretending you will). I don’t see any guilt tripping. Families don’t all work in the same way. Some are more a support net and some more of a spring board (and some something to run hard away from). The assumption that ALL autistics who can’t live independently are best living in supported living or institutions, is AS offensive as the idea all should live in the parental home. It’s like saying all children would be happier at boarding school or all babies should be in nursery..

Accepted. I don't feel guilty. So, what does my brother do when my mother dies?

I will have my son with me for as long as he wants to be. We will show him options at various stages in his life, and encourage him to be as independent as possible, but DH and I fully envision an annexe of some sort for him on our property where he can (hopefully) live semi independently.

I don't give a shiny shit what anyone here has to say about that. He can have as much of me as he wants before I die. My mum died at 56 and I am well aware I could too, or even earlier. Of course we will provision for him in our wills, of course we will access as much social care support as possible, we would never expect his sibling to take over from us. But if he wants to be with us, he absolutely can.

@TheNestedIf I don’t know what your brother would need, how could I? I would suggest that given you’ve already told your family you won’t be involved, that you could ask them what their plans are and then think about what (if anything) you would do based on their plans. I’m not sure they really need to share their plans if you have opted out though do they?

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.

OP is not the parent and it's not her burden to bear. This is the exact issue that needed years of therapy for me - I'm not responsible for my brother, I don't have to forgive his abuse, I don't have to have anything to do with him. I'm not the parent, I'm a sibling.

Now, if she wants to help out that's another story but OP needs to be careful about stepping into a parenting role, especially when she has an actual child to care for.

The assumption that ALL autistics who can’t live independently are best living in supported living or institutions, is AS offensive as the idea all should live in the parental home. It’s like saying all children would be happier at boarding school or all babies should be in nursery.

Its not like saying children would be happier at boarding school or all babies should be in nursery, because there are other options like local mainstream schools for children or SAHMs and grandparents for babies. (I looked after DGD 2 days a week, while DDIL was at work)

Statistically, the parents are likely to die before their grown up children, and carers are at higher risk from conditions like stroke, due to years of stress - so what is your advice for when both parents have died and the siblings are unable or unwilling to step up, as they are too busy with full time jobs, their own children and possibly caring for their in laws? What alternatives are there to supported living or residential care when the parents die?

There is no alternative for us with DD1. We do not expect either of her siblings to step in, because if its too stressful for us, it will be for them and even SS acknowledged no family could cope with her. DS works 60-70 hours a week, and looks after his children all weekend, while DDIL is at work; and DD2 has additional needs. DD2 can't look after herself properly without support, never mind look after someone else with very complex needs.

My kids feel the same with their adult brother. Life revolves around him, always had, always will. We’ve spoilt the younger two to make up for not giving them the time they deserve. They’ve not had the life some of their friends have. They can’t have friends over in case he appears naked or has a melt down. Extra curricular stuff is doable bit difficult,, holidays are impossible, doors are locked, food is locked away. They do understand but they must find it really difficult. There’s little to no support either my son or other kids.

@nonotmenotI - have you tried to access adult services? Social workers usually drift away at 18, there are no clubs where we live, no respite, nowhere for our young adults to go. And those with lower functioning autism won’t be accessing university.

[quote 5zeds]@TheNestedIf I don’t know what your brother would need, how could I? I would suggest that given you’ve already told your family you won’t be involved, that you could ask them what their plans are and then think about what (if anything) you would do based on their plans. I’m not sure they really need to share their plans if you have opted out though do they?[/quote]
This depends entirely on whether or not whatever plans have been made (or not) are liable to leave SS trying to involve the poster once both parents are dead. She is absolutely entitled to know if there's a risk that, as she grieves the loss of a parent, she will have to navigate that too.

@Cheeseplantboots no as my son is 10. I have already had a look to see what's available to him as he gets older and have found plenty within our area. My friends 19 year old has access to the services I listed. His social worker has been fabulous. I know it is not like that everywhere.

@RedToothBrush Thank you.excellent post.

The fact is there ARE excellent schemes out there for people with LDs. But the parents have to actively want to sort out the future for their children, rather than putting their head in the sand because it's an easier option. Also, medicine has changed hugely over the years. When my mother gave birth to my brother 65 years ago he wasn't expected to live that long, so she would have been able to look after him all his life. Thanks to massive changes in medicine, he may well live til his eighties.

The fact is there ARE excellent schemes out there for people with LDs. But the parents have to actively want to sort out the future for their children, rather than putting their head in the sand because it's an easier option.

Thats ultimately why the OP isnt being unreasonable because of how it will effectively end up dumped on her at a moment where she will be grieving for her parents and dealing with their estate as it stands.

At the moment her issue is her parents not doing anything to allow her the opportunity to see her and her daughter. But thats merely a symptom of the bigger outstanding issue here rather than the actual problem.

Asking yourself honestly what you CAN do to help is NOT the same as suggesting anyone should take on sole responsibility for their sibling.

OP is not the parent and it's not her burden to bear. This is the exact issue that needed years of therapy for me - I'm not responsible for my brother, I don't have to forgive his abuse, I don't have to have anything to do with him. I'm not the parent, I'm a sibling. I wasn’t for a moment suggesting you were. I think you are carrying a lot of residual guilt that’s colouring how you read posts. For example when my mother was caring for her mother with dementia I couldn’t give her respite because I was massively overstretched at home. What I could do was ring her every day and let her rage/cry/laugh with someone who loved them both and she didn’t have to protect my grandmothers privacy with. If that was too gruelling then I would have found someone or something else to help. I love them and some paths are hard. It sounds like OPs father is trying to do more with his son, so they obviously are trying different models to see what could work.

For autistic people who also have learning disabilities and/of epilepsy life expectancy is about 40 (or so I was told a few years ago). I often wonder if it’s linked to the year their primary carer dies.

Could you perhaps see your Mum on Saturdays when your brother is with your Dad OP? Could your Dad commit to one Sunday a month?

I wasn’t for a moment suggesting you were. I think you are carrying a lot of residual guilt that’s colouring how you read posts.

Lololol. There's no guilt here, that's exactly what I spent all that time and money on dealing with. I owe my brother nothing, despite what I was conditioned to believe. Your post was an implicit guilt trip of the OP and while her mother may be shouldering a lot, it's not "for OP to be free of it all". It was never OP's burden to shoulder in the first place and her mother isn't obliged to continue in the set up either.

Clearly your post resonated with many of us - in the opposite way that you intended it to - and I'm delighted for OP that so many people pulled you up on that nonsense.

I'm glad for your mum that you are able to support her with her mother but it is not and never should be an obligation on you. I think unless you're raised in the situation I and other posters here were raised in, you won't get it. It's very different to dealing with an elderly person with dementia, I've walked that path as well.

@BoaCunstrictor I disagree. I don’t think anyone is entitled to know your plans and if one is clear and means it I can’t imagine SS can do much to involve you in whatever process has been set up.