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.

Sorry OP.
You've got to have a frank conversation with your mother about you. And your grandchild. Sometimes you really just need to scream you have another child too.
I have an autistic brother too and I know we aren't really allowed to talk about how it affects us, as children it's always focused on how hard things are for X, no acknowledgement it is actually quite hard for us. It robs you of your own childhood when you're walking around tiptoes, although I may get flamed here for saying that... It must be so hard into adulthood too, my brother is fairly high-functioning (he will never leave home and I suppose end up in some sort of supported housing when they die but in regards to other stuff fairy high functioning). Sorry, it's shit. So unfair to your child too.
You need to sit down and make a list of all your points and have a very frank conversation. She will not live forever, the sooner he learns/develops coping strategies the better. Make it clear you won't be looking after him once she dies too, I know my mother assumes one of other 4 children would, probably still does but none of us will. The reason I'd suggest making that clear is because it will hopefully make her realise the importance of preparing him which will hopefully positively impact you and DC.

@DottyHarmer, why is difficult in "". You can use the term disabled or non NT. What are we supposed to do with our disabled children when they get to 18? And why would care planning include other children who are old enough to have children of their own?

Does your DF perhaps have autism too? To not see you because he must do his hobby every weekend seems like the same thing, refusing to break his routine.

The only way to make changes in these circumstances is with very slow baby steps, and with plenty of advance notice and detail. Pick one thing, the most important thing, and start working on that. Last minute routine changes will be the thing he'll probably never adapt to. But this situation will change at some point. Stress to your parents that it's better to try and help him gradually now that you all have the luxury of time, rather than wait until something forces the issue.

Adult CAMHs That's just social care isn't it? CAMHS means Child and Adolescent Mental Health Services. There is no equivalent for adults. Services just get whipped away at certain ages.

@PaulGallico

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 completely agree with this.

The older he gets, the harder any sort of change is going to become, and your parents are not immortal. Quite apart from the pain and stress to you (which matter, and are valid) it's creating a hostage to fortune, in that his life will collapse in unbearable ways, when your mum isn't able to provide the support she does at the moment, and possibly your father too.

Your parents need to start looking for supported living options, and how they safely and manageably move him into that life. Everyone, and actually mainly your brother, will be better off with that set in place.

I have autistic kids. I also have an autistic older brother. It's valid and human for everyone affected to feel sadness, frustration and anger as well as love and appreciation. I sometimes think people would rather others bottle up very human ambivalence, as it makes them feel uncomfortable - but it's normal. You are sad for the life you wish your daughter had, and that's entirely justified.

Having said that, your brother is going to need a plan that will allow him a life past your parents's own health.

I think your parents need to think a bit more long term. The issue here is t just the effect it has on you. It’s the effect it has on your parents and the effect it will have on him.

If they are in their 60s, they need to think that in 10 years time, they might not be able to look after him that way (looking at both my parents and PIL). What is their plan then?
If the answer is assisted living, then they need to get the ball rolling there, not the least because this will give time to your brother to adjust rather than having his whole world turned upside down.
I also agree about the fact he needs to introduce a bit of flexibility in his life. Yes I’m sure this is stressful. But your dmother, DF and yourself won’t be able to support him if you don’t have some breathing space too.

@LadyJaye

As an adult with high-functioning autism, I agree with others that is nigh-on impossible to access any kind of support, particularly if you are able to function to a degree (i.e. verbal, living with supportive family etc).

OP, you say your brother is in his 20s and was diagnosed as a teenager. I am in my early 40s and was diagnosed with what was then classified as Asperger's at 33.

I am very 'high-functioning' - I am a home owner, have multiple degrees, in a long-term relationship, have a senior professional job etc - but I was, without a doubt, at my most 'autistic' during my 20s. The transition from 'quirky child/teen' to 'neurodivergent adult who looks 'normal' (I'm sorry, I hate that word too) but is struggling to cope with this new part of life' was at its most evident then.

However, while there are no quick fixes, there are ways around this. Many autistic people (I am one of them) fixate on routine and dislike change, but that doesn't mean change is impossible - just that it will take a little longer than for most NT people.

Your parents can help your brother by expanding a little and making it very clear - 'I normally leave the house at 12pm and return at 3pm, but today I will be leaving at 11.30am and returning at 3.30pm', for example.

With regard to the relationship between your daughter and her uncle, do they have any shared interests, such as reading/jigsaws/mechanical engineering?! Help your brother to engage with your daughter in a way he feels comfortable and hopefully the relationship will progress. Small children are often, by nature, quite chaotic and difficult to understand, so small steps may help both feel more comfortable in each other's company.

I appreciate that that won't resolve the situation overnight, but with time, it may help you develop a more functional relationship with your family.

I have been enormously lucky to have been blessed with a supportive partner, friends and family and I am aware that my approach to life makes things difficult for them sometimes, but, like your brother, I am not being awkward or difficult on purpose.

I wish you all the very best.

I think it depends where you live. I am an autistic adult with university degrees and have social services support

@ineedaholidaynow and @MrsOvertonsWindow thank you both. Up until a year ago social services would meet with my mum and brother regularly. I would tell them it was time for my brother to move into independent housing and what was going on. They would ask them both if this is what they wanted and both said no, they wanted to live together. It was really frustrating as the situation was awful for both of them. However now there is a new social worker involved who has seen the situation for what it is and is working hard to sort it.

I'm slightly going against the grain here. I think the situation is difficult for your parents, but they have achieved a routine which is just about working and keeping your brother stable and reasonably happy.

As the mother of an autistic child, now an adult, I'm aware that the delicate balance is fragile and can easily go wrong and come tumbling down like a house of cards, with all the inter-related components: sleeping, eating, not self-injuring, perhaps, going wrong all at once. I don't know your brother of course, but I do know that autism comes with challenging behaviours which might present - although the hopefully only do so, once in a blue moon.

I'd prioritise keeping things on an even keel so your mum can manage; which will be helping your brother to lead a fulfilled life.

It's difficult for you, but harder for your mum and your brother. Lots of parents don't have childcare help from their parents, so, I guess, you can't expect that as a given, not in view of the circumstances your family have.

Will you just be making your mum's position harder, emotionally, certainly, by putting pressure on her to override your brother's wishes?

There should be some respite available I would have thought: direct payments to fund carers; social clubs run by Mencap, for instance. There is a compelling argument which she could present to the local authority: "I want to be able to see my grandchild!".

I think it might be most reasonable for you to accept the situation for what it is. Yes, you could try tweaking your brother's routine and perhaps asking him to compromise, but at what cost?

I'm slightly going against the grain here. I think the situation is difficult for your parents, but they have achieved a routine which is just about working and keeping your brother stable and reasonably happy.

But are they happy, though? It doesn't sound like it, given OP mentions them suggesting routine changes to the brother and being shot down. Their happiness (and OP's) is no more or less important than her brother's. Right now it seems like the situation is only working for one person and it doesn't seem like it can be the final answer, unless the parents outlive their child.

@Eggfriedpower that's not a fair comparison. OP's brother could change his routine. It would need to be managed and he'd need to be prepped but autistic people can adapt. It's actually not terribly helpful for him to have his routine so firmly set in stone.

Sorry I haven’t read the whole thread so I maybe repeating things.
I have to DD’s with autism, youngest is more severe, I always worry that dd1’s life is effected hugely by dd2 and her routines. I can see why you are upset because you deserve time with your mum as does your dd.

Your mum needs to consider your brothers future and what will happen if/when she’s no longer around to care for him. There are ways of getting him a placement or to get him a flat and have carers come into him, the process isn’t easy and it means her refusing to have him live at home. I really hate how there’s no support out there and the only way to get help is to make your adult child homeless so SS will then find a placement/supported living. I’m dreading this with my dd but I know it’s something I have to do to ensure she doesn’t rely on me until I die .
I feel for your mum, she obviously has no time for herself and her life is about keeping her son happy, this has meant you losing out and your dd.

Do get her to talk to SS, your brother needs to access services and ideally needs a life outside of the family home in order for him to live a long happy life without relying on your poor mum. My main worry is ‘if dd2 stays with me forever ,her sister will then be expected to care for her when I’m gone’ and that isn’t what I want.

To be brutal - your parents are going to die several decades before him and there will be no possibility of him avoiding that change in his routine.

And they currently have no independent life at all. All their comings and goings are strictly controlled to conform to his demands.

Is autism really the only thing going on here?

@llmk why is it ableist for the OP to express her frustration and upset?
She has needs and feelings too. Her parents are blatantly favouring one child over another. That's called favouritism.
There is no reason why the brother's routine couldn't be altered to suit both everyone through the use of for example, social stories. Yes there'd be some fallout but then he'd adapt to the new routine.

I want to address some of the above comments about siblings and their feelings.

It actually is ok to be pissed off with your disabled brother and sister and it’s a bit insulting to say otherwise. I have a relationship with my dsibling and love them very much, but we grew up together - they aren’t some sort of angel - it is a normal part of a sibling relationship to be pissed off with your brother or sister now and again. If I were not then it would be a weird sanitised version of a sibling relationship with no depth at all.

It is also dangerous to restrict the feelings of a sibling due to their future relationships and the ability to form healthy boundaries. Being told to put everyone ahead of yourself and a constant guilt quite often leads to mental health problems and resentment when young siblings grow into adults. It’s a betrayal of the individual person and stunts their own growth and understanding of who they are. Disabled people matter but the impact on the other dependents in each family is also huge and should be acknowledged.

@AgnesNaismith excellent post. You make perfect sense.

PPs comments about your parents getting older are correct - at some point they'll be unable to care for him and will need to move him to supported living. The older he is when this happens the more traumatic it will be.

Sit down with them if you can. Have a look at www.autism.org.uk

There is a range of options, from group homes to supported living in his own home. They also run social groups and family support.

SS are underfunded so will try to dodge their responsibilities - you may have to be quite firm. Some charities will help to advocate for you, there's a list at www.autism-alliance.org.uk

Best wishes, I know it's hard

It’s not ableist.

I have 3DC, middle child has ASD/ADHD.

My children are absolutely allowed to be fucked off when middle DC wrecks a family outing, or we can’t go on one, or they have to listen to her screeching over fuck all (to them, anyway, not to her or to me) in the morning before school.

I manage everyone’s needs as well as I can and I’m far from perfect, perhaps only 1 in 5 trips out are “wrecked” now as we’ve navigated most of her triggers.

I would never dream of making my other DC feel guilty for feeling for resentful at times. That’s horrible .

Something I noticed from your posts @IAmHereButNotHere, was you mentioned your brother increased his visits from 2 per week to 3 per week and yet you're saying he can't adjust to change? He did.
Can you try and get him back to 2 visits per week which was his routine at one point? Is there anyway to phrase that so that he can see it was his routine and he's returning to his routine, thereby freeing up one of the days for you to visit??
One other thing, when I change my car (doesn't happen often) even as a NT individual, it doesn't feel like 'my car' for some time following that change. I can't imagine what it must be like for your DB when he gets so comfortable with one thing and for it to be changed, unless there is plenty of warning given.
Can you give him plenty of warning, like plan a visit to your dad for 2 months in the future and you and your parents keep reminding him that you're going to be visiting on X date so that it doesn't come as a shock and he can prepare for it in whatever way he needs to?

@Paulinna

So how do you suggest they magically make him able to cope, @Paulinna? Stop tiptoeing and let him take a hissy fit if that’s what he wants to do. He’ll have to get over it. You can’t go around pandering to people.

and amputees should get over it and grow a leg?

you are a piece if work and no mistake

@Shoxfordian

I don’t think you’re that unreasonable Has he had any professional help to manage his autism?

Sadly there is nothing. I despair at the state of the country. Autistic people even as children never get help or the opportunity to gain the life skills they need for independence. It's appalling. We've had 10 minutes of therapy from Camhs in the last two years. All sessions are cancelled every time. We are now facing adult services who have even less funding. Basically you are alone, help Just doesn't come, the ones that need help don't get any.

@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.

I’m so sorry your DM is going through this and you have to witness it.

Beautiful put @Motorina , thank you!!

I truly hope my DD is as successful in life as you are That's all I could dream of x

Something I noticed from your posts @IAmHereButNotHere, was you mentioned your brother increased his visits from 2 per week to 3 per week and yet you're saying he can't adjust to change? He did.

You're right. It sounds less like difficulty coping with change, and more like difficulty coping with change that he doesn't like and doesn't instigate personally.

Autistic people are as capable of being controlling as anyone else.

Your brother is legally entitled to an assessment for support. And your parents are legally entitled to carers assessments. IPSEA and Cerebra have guides on accessing the support you are entitled to.

Your local authority are acting unlawfully by not supporting you. But unfortunately your parents will need to push and push to get this help.

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.