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.

@Outfoxedbyrabbits do you intend to put your children or husband into a home when/if they become dependent? Do you want to end your days in a care home? I think it’s very easy to say what someone else “should” do. I think people should be allowed to live how they want not to some model prescribed by other people.

@welcome2021 surely you manage how you think is best just as she did?

@5zeds I have recently helped my husband and FIL "put" my MIL into care home, as you so kindly put it, at the point where her dementia became unmanageable at home and she could not be safely or properly cared for by my FIL. Her worst fear was becoming a burden on her family, my FIL did his absolute best and kept her at home for longer than anyone could have expected (even the care staff were amazed at what he had been coping with) but in the end her health deteriorated to the point where it was not possible any longer.

I don't intend to "put" my husband into a care home should his needs become incompatible with home life; he, however, has made plans to put himself into one. I don't want to end my days in a care home but if I live long enough or become seriously unwell it may be the only choice I have.

I think people should be allowed to live how they want not to some model prescribed by other people.

This irony of the above statement in the context of this thread is astounding.

Apologies if “put” has triggered a visceral reaction in you @Outfoxedbyrabbits many people CAN’T make plans to put themselves into a care home. Their carers make that decision. You seem to be admiring of your FIL managing so long, you decribe carers being amazed (impressed?) at what he coped with, yet parents in the same situation are characterised as selfish/shortsighted/lazy. F course it MAY become the only choice, but people shouldn’t be shamed for choosing differently while they can. NOBODY can force their children to care for their siblings. Siblings can choose to do nothing, they can choose to help choose support or I guess they can move in and take over where their mother/father left off.

For us, our son would only live elsewhere if he wanted too and it was safe for him to do so. He doesn’t and we wouldn’t enjoy it unless he has a massive developmental leap. Tons of people live as extended families in the uk, even more do elsewhere.

For us, our son would only live elsewhere if he wanted too and it was safe for him to do so. He doesn’t and we wouldn’t enjoy it unless he has a massive developmental leap. Tons of people live as extended families in the uk, even more do elsewhere. and at what cost?

Do you expect his siblings (assuming he has any) to stay away because he can’t handle them being there?

And what about when you’re no longer able to care for him? What then? His siblings can’t be expected to take responsibility for his care, so what provision is there for him then?

There have been numerous threads on here over the years from posters with disabled siblings who have felt they are not permitted to talk about the negative impact a severely disabled sibling has had on their lives.

A parent will look out for their child 24/7, but at the end of the day if that means sacrificing relationships with their other children or even their own life who exactly benefits?

As an adult with autism, no it’s absolutely not unreasonable to be annoyed that you can’t have a relationship with your own parents without your brother making demands on you!

My mum and brother make allowances but not that impact their lives, it’s more that if I get upset I can seem really unreasonable but it’s just that it takes me longer to process stuff, so they let me know stuff and don’t take anything I say immediately seriously, like a grace period. After about 5 minutes I’m fine and apologise. I’d never expect them to change their routines or anything like that to suit me

In terms of feeling upset/resentment - I do think it is normal. I'm coming at this from a slightly different angle in that my father and I are both high functioning autistic - but his absolute need to be in control at all times plus his anger issues that went along with him not feeling in control made my own childhood harder to deal with. If you've spent years walking on eggshells you can absolutely experience trauma from that.

So you see a parents job in this situation to prioritise their nt child? What happens if you have more than one disabled child? What happens if there are other pulls on your resources? Elderly parents, war, illness, job loss, crime? What then? Is it the parents job to ruthlessly jettison anything or anyone who gets in the way?

And obviously - obviously! - the best way of going about this depends on how severely your brother is affected but even if it takes a while to adjust it is possible to get used to change or develop coping strategies to deal with it. His may well look very, very different to mine, but it's not impossible unless you assume everything in life will be in complete stasis forever, which it won't. You can't just make him "get on with it" out of nowhere because that definitely won't end well, but change over time is clearly possible if he's been able to make changes before to e.g. the number of visits. And yes, unfortunately your parents will die so they had better develop a plan that doesn't make you his sole carer.

I agree with those calling out the ableism! You wouldn’t say it’s okay to complain about someone that had a broken leg, or was blind, so why is it ok to say things about someone with autism. I have an uncle with autism who has much more needs than myself, and is in a type of care home for autism, he has been in homes for at least 10 years because my mum (his sister) managed to persuade her dad that it was time for him to have some independence, unfortunately my grandad is still ruled by his son as his son rings him at least 8 times a day telling him how people are against him and plotting things against him. My grandad refuses to ignore the calls or explain that it is not reasonable to ring him at all hours of the day (and night!). It is my grandad who is the issue not my uncle, if my grandad had laid down enough boundaries in the first place he would not be in this situation now. My mum has tried to explain (as kindly as she possibly can) that when my granddad passes away she will not be taking responsibility for him, so it would be kinder to limit the contact now, sadly my grandad refuses to do so. So sadly my uncle will probably end up hurting someone when my grandad dies because he can’t cope with the change to his routine. He has been violent before, and it’s because he’s never been taught boundaries.

I think you might be naive there.

Putting boundaries aren’t always enough for someone else to actually ‘get’ they need to stop a behaviour. It’s not even about being autistic or NT or whatever else.

Some people who have autism are also twats. They are people. Just people with a rain wired in a different way. They can be kind, they can be arseholes. What makes you think your uncle’s behaviour is all down to autism and not him being selfish/controlling?

Your grand dad clearly was coming from a good place, one where he wanted to help his dc. Wouldn’t you do anything fit your own child??

You have no idea what your grand dad has been Told at the time re ability to learn/boundaries/appropriate boundaries with a child and then adult with autism.

Whilst I agree that ableism isn’t on, making any issue the responsibility of any issue of the NT people around isn’t on either.

A parent will look out for their child 24/7, but at the end of the day if that means sacrificing relationships with their other children or even their own life who exactly benefits?

To be fair, I think there is an expectation that mothers (sorry parents) should always put their dcs first even at the cost of their wellbeing. It’s even more noticeable when the child has a disability, whatever it is b

@welcome2021

Offering good choices is right. It's when siblings aren't offered choices that's the problem. My mother chose to keep her son living at home with her with no support from social services until her late eighties (when her bowel ruptured and she was in hospital for 6 weeks, so I was able to step in and get emergency help). She made the choices for herself and my brother. Unfortunately she also made choices for my life, to become his default carer.

I think unless you have a child with significant disabilities yourself it is very very difficult to understand how it feels to parent somebody like that as they get older. The way I feel about and parent my autistic child is akin to the way I parented him as a baby, in that he is bonded only really with me and utterly dependent on me for all his needs. I have to keep him safe in much the same way as I did when he was a baby too. My job is to try and nudge him away from me gently as he gets older, and school etc help with that. But it's very likely he will identify me as his primary carer forever.

I adore him, so I am happy to do all this. I don't want anyone else to do it, I just want a bit of support for me and him so that we don't get burnt out.

I genuinely get so much joy from his company that it outweighs all the drudge work. Everybody who meets my son adores him. He is the most honest and happy child.

I don't know if he will grow up to be an honest and happy man, but I have no reason to believe he won't. And for every anecdote on here about autistic adults that struggle I can bet there's another autistic adult out there living their best life. I have to believe that. Otherwise what's the point?