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.

Be wary of blaming g your brother for isduesthat are more about your relationship with your parents. It is not his fault that your dad prioritises his hobby over seeing you at weekends or that your mother chooses to prioritize keeping him in his comfort zone at all times over a day trip with you.

Yanbu to feel sad and frustrated. I feel so sorry for everyone in this situation.

Maybe it will get easier when your daughter gets older and you can perhaps visit a little more.
I've no advice but I feel for you😔

YANBU OP. I agree with other posters - you may need to encourage your parents to fight harder for support. At the very least, they must be formally classed as carers as I believe there is some support in that case?

The reality is that your brother has to be able to accommodate some change. It will be very very difficult but, alongside the shift in days with your dad, he will have had to accommodate new routines throughout his life. Doing so would probably have been very difficult every time, but, with hard work and persistence, it was done (eg routine at school, routine at new school, routine when leaving school etc - these were all shifts that he successfully navigated although it would not surprise me if you and your parents and him all found those times very difficult).

So, agree with a PP that, for example, on days he's with your dad for example, he needs to start learning that your mum will not necessarily be there at a set time or the time might be later. Or perhaps you have to build her seeing you/DD into his routine.

One thing I do think though is that trying to get a relationship between your DD and your brother is, at this point, unrealistic. I'd focus on facilitating better relationships between your DD and your parents and changing THOSE routines. Then, perhaps later when she is older and can better understand/accomodate, you can work on routine changes that involve her engaging with him.

My autistic teen used to have a meltdown if we broke routine. If I randomly said we were going shopping or whatever it was a nightmare. This might sound awful but I just kept doing it and you know what, the meltdowns/head banging stopped and he learned to cope and now is fine having a change of routine.

@welcome2021

I've been in this situation with my own brother. Since dad died he has been allowed to rule the roost for 30 years and my mother now in her nineties has become more and more controlled by him. He hated my children when they were little, used to shout and kick them, so we avoided seeing mum as much as possible. Mum never really protected them from him, blaming his disabilities. As he got older and she became more frail, he took over every aspect of her life. She's not allowed to choose the tv programmes she wants (he has a tv in his own sitting room, but chooses the main living room one). If mum gets ill he screams and shouts to such a degree that she doesn't dare let anyone know and he doesn't let her sleep during the day either (she's in her nineties).

He stopped showering two years ago and hasn't brushed his teeth for decades. He is autistic and has LDs, but the flip side is that his behaviour is also abusive.

Didn't want to ignore welcome2021 's post. Autism or not, what is happening to your elderly Mum is elder abuse and she needs protecting. Please contact social services - no one should live in this way and your Mum needs protecting from your brother, especially if she's ill but getting no treatment.

I have an autistic sister and her rigidity and lack of understanding for other people pisses me right off. I know she can't help it, but it doesn't mean it's fucking annoying!

It also annoys me that my parents (esp mum) pander to her to avoid her getting upset. I know they're just doing their beat but it's still ok for me to get annoyed with it!

In short, don't feel bad or guilty for being pissed off. Just because someone can't help it or has a disability doesn't mean we can't be pissed off with them!

*He clearly can change though as he used to only go to his dad's twice a week and now it's 3 times a week. If you're honest with yourself, does he cope with other changes if it's what he wants?

He sounds like he's got used to getting everything his way given he tells you all you have to give in to him because of his autism. He might not mean it this way but he seems rather manipulative*

As an autistic person, I agree with the above

BTW my autistic brother found the noise of my daughter crying to be overwhelming. He still lives at home, so when my mum had her he went out for the day

I’m
Really shocked there’s no help out there for your parents. At the end of the day, if they phoned up adult social care and says we can’t cope anymore, they’d surely have to step in a put him in some kind of residential setting?

What would they do, leave him to be homeless? I don’t think they would as they have a duty if care to him surely

I thought adults with disabilities were protected and priority was given to them for housing etc…

Another autism thread wreaking with ableism.

'He will just have to cope/manage/get over it'

My Dp is personal support to an autistic young man through social services. He lives with his family. They both help out at a charity shop, go places, beach clean, play video games and pre covid went to the cinema. He isn't rigid about days and times but although he has a routine it's flexible.

Your parents need to approach social services. Your brother needs an assessment and your mother needs a carers assessment. Is your brother getting the right benefits? Does your mum get carers allowance? I would suggest an important move is towards some form of supported living. If your parents are in their sixties there will soon come a time when they are no longer coping - it is better to work towards a move rather than, for your brother's sake, reach a crisis. I would also say (as the parent of a disabled young adult) blame seems to be being placed towards your brother when in fact your parents need to step up and support him into a secure future.

I have an autistic son (15) and husband. I do sometimes wonder whether the diagnosis can hinder normal life, and this control over your mum's comings and goings is a perfect example. Another one I think can be, in some cases, fussy eating. Once the diagnosis is there then certain behaviours are accepted and then become normal life, being justified because of the autism. However living like this is not sustainable. Your brother cannot be permitted to control others' lives to this extent. There will come a time when your mum is delayed, or unwell, and what happens then? I have found that explaining to my son what needs to alter in our lives, and then doing it, leads to him adjusting albeit reluctantly, but then a new normal comes along. I think that part of my responsibility as a parent is to prepare my son that he will have to adapt in some situations. The current one we are on is that he is used to me making him toast. He likes that repeated routine. However it is of no help to him in the long term for him to not be prepared to do this for himself at times. So far he hasn't had any toast today...I am insisting he makes some or goes without!

You must be so frustrated and bitter that you just have to suck all this up. Obviously it's not your brother's fault but you (as a family) definitely need some help with management techniques.

Social stories can have incredible results when used in the situations you describe.
www.autism.org.uk/advice-and-guidance/topics/communication/communication-tools/social-stories-and-comic-strip-coversations.
They are truly magic, and I have seen people cry because a problem that has plagued them for months has been solved so quickly.

The National Autistic Society website has a wealth of information and outreach programs.

I think the solution lies with getting onboard, rather than fighting against his needs.

@llmk what’s the alternative? OP, her parents, current child and her potential future children all have to dance to his tune forever? The things he does / wants are impacting on other people, not just on him

@IceLace100

I have an autistic sister and her rigidity and lack of understanding for other people pisses me right off. I know she can't help it, but it doesn't mean it's fucking annoying!

It also annoys me that my parents (esp mum) pander to her to avoid her getting upset. I know they're just doing their beat but it's still ok for me to get annoyed with it!

In short, don't feel bad or guilty for being pissed off. Just because someone can't help it or has a disability doesn't mean we can't be pissed off with them!

Your poor sister.

I feel you loss and I feel it is natural to be feeling pushed to the sidelines when a sibling requires so much focus from your parents. Along with other people here I am concerned how your brother should manage if anything were to happen to your parents. Even for children I have found that there is very little help on the NHS for mental health or special needs/learning disabilities etc.
I feel contacting somewhere like the NAS Lorna Wing would help direct you to where you could find help/advice. I have always found them very helpful.
Your whole family needs to be on board to change because it is going to cause hard work. It may help if you discuss with your brother the necessity for change - and ask him how he is going to lead it. He needs to be on board and if he sees it as under his control then it is more likely to succeed. I really feel he need access to a therapist who can teach him to control some of the anxiety and panic he will feel at change. I would approach Adult CAMHs as this is a case of severe anxiety and panic disorder that is severely impacting on his life but that he needs therapy with someone used to working with autism. However, I feel you are going to get better help with a private therapist.

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?

Some MN posters like to claim disablism to shut down any negative feelings NT siblings may have. Ignore them, OP. You love your brother, you want to adapt to him but you're human too and you need to be able to express your feelings.

While your parents do have to adjust for your db, he should not be allowed to ride roughshod over your relationship with your family - which is what's happening, although he may not mean it. And while it might be easier to let him continue like this at present, how is it setting him up for the future? What's he going to do when your parents pass away (of course, hopefully that's very far away)?

Social services are talking absolute bollocks.
My sons are in their early 20s and my younger son has direct payments for us to buy in services. My older son has access to a variety of services. You need to contact an advocacy organisation and get their help. SS are full of shit. A disabled adult is entitled to needs assessment and adult services involvement.

Without sounding harsh you unfortunately have to fight hard for support. I have fought tooth and nail for my severely autistic son who is now 22.
You need to contact adult social services, tell them you can’t cope and push for assessments for both him and your mum as your brothers carer. These things take time to implement, be prepared to keep asking/pushing and get tough!
The National Autistic Society will also be able to help you and do check that your brother and mum are getting the correct benefits.

I think that every parent bends over backwards to make life easier for their most “difficult” child, no matter what the issue. Then of course they can’t face the fallout if there is a bad reaction to something, so end up living their life walking on eggshells - and prioritising this dc over the others because it becomes a question of anything for a quiet life.

When I started university the girl in the next-door room was a medical student. She was very upset as her db with LD could not cope with her going away and her parents were appealing to her to give up university and come back home . I presume the parents were in a tough place, but I felt very sorry for the girl.

"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?"

Or a blind person who can't cook for themselves. Perhaps the solution to them, would be to offload them.
The parents aren't complaining, the OP is. The parents don't have to throw their son out and leave him to others because the OP isn't quite getting the life she wants. I wonder if she had a partner if this would be as important. Posters on here usually advocate moving as far away as possible from parents and not look back.
Future planning doesn't have to happen now, unless those giving the care want it to. Then it will be a matter of deciding if charity provision is best. His needs and routine will be met. So no, he won't just have to learn to be flexible.
People fall over themselves to show how much they think of disabled children, when it comes to adults it's 'send them away'.

He CAN adapt to change - his routine has changed many times in his life and it will change again. But he's always going to need a routine of some kind to keep his anxiety at bay.

Can you and your parents, and anybody else affected, get together and decide what a good routine would look like that balances everyone's needs to a reasonable extent? Then you can give your brother lots of notice and ease him into it.

You must be so frustrated and bitter that you just have to suck all this up. Obviously it's not your brother's fault but you (as a family) definitely need some help with management techniques.

They really don't just have to suck this up. The local authority has clear legal duties to provide care and there are ways of ensuring that they don't slide out of those duties, as a number of posters have pointed out.

My son has ASD. He was diagnosed at 3 so I have lots of time to think about what happens when he reaches adulthood.

I have had to repeatedly beg for a SW who in the main is useless. But it's all with the end goal of him being supported as a adult.

People with LD must definitely do end up on the streets when their elderly parents die. I'd rather avoid that or lumber my other kids with that mess.

My son has no routines as such that he must do in holidays or weekends. But he does during a structured school day.

I have no idea about adults with ASD but what I personally know is that over time kids can learn and tolerate things not going to plan.

I also know that in my county if my ds didnt have socail care before 14 he wouldnt be transferred to adult services and I would have been told if I had coped so far I wouldn't need it.

Every year the bar for children's disability socail care ramps up. Unless your child needs over night nursing I dont think its realistically possible to access any more