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.

@Macaroni46

why is it ableist for the OP to express her frustration and upset?

I didn't say it was.

@Eggfriedpower

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?

Look we're not saints! We get annoyed with relatives for a whole host of reasons, and there is nothing whatsoever to feel guilty about if you get annoyed with a relative for any reason, disability included.

I hate this idea that just because someone is disabled you can't possibly ever get annoyed with them. Of course you can! They're just people after all!

Whether you chose to show that to the person how annoyed we are is another matter. I wouldn't call my sister to her face fucking annoying- of course not whats the point it's just mean and wouldn't get me anywhere. I also wouldn't say it to family members. Again doesn't achieve anything. Doesn't change the fact that she is fucking annoying sometimes (just like lots of other neurotypical family members)!

We need to stop pretending we're saints! And not guilt trip other people for expressing their genuine and well founded experiences on an anonymous forum! Surely a great place to express feelings that you couldn't say in real life!

Unfortunately your parents are enabling him to be unreasonable - yes he has autism but that doesn't give him the right to impose such routines on your parents. I have an autistic adult child, it's hard but you have set strict boundaries for them to enable you to live. Some autistic adults do need full time care and there is help in those circumstances, adult social services can help - but it sounds to be he isn't as severe hence being diagnosed as a teenager however adult social services can still help. My dp's dd lives with two autistic adults and another young lady with carers - social services set it up

I have an autistic 7yo (diagnosed with Level 2, moderate autism, attends a special school as also had global development delay and ADHD) and a neurotypical 3yo. Since my DD was born I have been busting a gut every day learning what support my family are entitled to. So in the last three years I've sorted out: special school place (had to go to tribunal for that), Disability Living Allowance and Carers Allowance for me, blue badge, currently in a tussle with LA for assessment for access to disabled children's service and direct payments to employ a PA/carer to take DS out or support him at home.

Why do I fight? For BOTH my children. As every intervention and easement I fight for benefits them both. Direct payments will be the big one because I will be able to dedicate myself to my DD in those times. She has quite a bit of me while her brother is at school, but as she gets older we will also look at accessing young carer services for her to process what she is going through.

Another autism thread wreaking with ableism.'He will just have to cope/manage/get over it'
What’s the alternative? He will have to cope because there’s no other choice. Things cannot stay as they are. Apart from anything else, in the long run his parents will die and he needs to be able to live independently.

I wouldn't call my sister to her face fucking annoying-

No, you just bitch about her disability on the Internet. To other people who have that same disability.

@Paulinna

Another autism thread wreaking with ableism.'He will just have to cope/manage/get over it' What’s the alternative? He will have to cope because there’s no other choice. Things cannot stay as they are. Apart from anything else, in the long run his parents will die and he needs to be able to live independently.

But some people can't live independently.

The best thing your DP can do is kick him out so adult social services can step in. SS involvement is needed for him to have any hope of living a normalish life.

@Eggfriedpower

I wouldn't call my sister to her face fucking annoying-

No, you just bitch about her disability on the Internet. To other people who have that same disability.

We all find our siblings annoying don't we? Why can't I find her annoying? This is an anonymous forum and I am perfectly entitled to say I find my sister annoying! Because she really really is!

Sorry if this has rubbed you up the wrong way, but it's true, it's my reality, and you don't have to like it!

@Eggfriedpower

I wouldn't call my sister to her face fucking annoying-

No, you just bitch about her disability on the Internet. To other people who have that same disability.

This thread is not about you, don't try to make it so. OP and that other poster are entitled to feel upset/angry/frustrated etc by the hand they're dealt. They're only human.

Not being able to vent is a common issue among NT siblings, which can lead to issues with relationships and can take many years of therapy to work through. Speaking from experience there. I don't love my autistic sibling - I wouldn't piss on him if he were on fire, he's an abusive prick - but people can love their sibling and need to express the struggles they face.

Your feelings are valid and it must be very difficult. There are options for your parents and brother that will be helpful and positive for all. He can have gradual changes to his days that can become the new routine. How about a behaviour analyst helping to make those changes? He could have a professional person take him out certain days because I'm sure this is more difficult for your parents than it is even for you. A professional could take him to enjoy a new hobby because he is also a prisoner of the routine he is currently locked into.

In Ireland and here you can't access any help (and it's known there's not much for adults anyway) without the person calling themselves and asking. We finally convinced my brother and he walked out after a week from counselling and education and when I rang them they said it's up to him to come back. It's all one big, messed up circle. Op I really feel for you but yes, there needs to be some talks where things gradually change. My brother is 34 and he's always thrilled to see us for a minute or so and then ten minutes later we hear him running up and down the stairs and bouncing off the walls because we've stressed him out by just being there. Huge hugs

@Eggfriedpower but then something starts to need to be put in place so that when the parents are completely unable to look after their son, it won't be such a shock to him.

I am assuming people who have autism possibly find their siblings annoying too

Your parents need to stop being so unfair to your brother and start promoting independence (( and believe me your mother WILL be getting something from having your brother so reliant on him)) this is totally unfair.

Yes, he does have to take some responsibility but as theyre his primary carers this whole situation is on them.

I have two dcs who have Autism and whilst we expect and manage routines and coping mechanisms flexibility has always been there so we can all be happy.

I just think that is someone called someone else fucking annoying because they were blind or deaf or in a wheelchair it would not be as acceptable.

He's already changed his routine to increase the time he sees your DF.

He can damn well change it back again.

He changes his routine when he decides to stop washing or lock himself in his room.

He can damn well change now as well.

He can change anything that benefits him, but is suddenly unable to cope when it's not putting him first. Well, time to use that adaptability in a way that doesn't harm others.

Coercive control is still coercive control when it's somebody with a diagnosis raging at their mother for going out without his permission as when it isn't.

A diagnosis does not become a weapon with which to control others or to excuse being aggressive and making other people's lives unpleasant because they might get a scrap of attention to their needs. DP doesn't do it, I don't do it, my DB didn't do it.

Over 25. Spoke to Adult SS and they said they don't support people with Autism unless they have no family, local charities and support groups only support until 18.

This is their local and unlawful policy. Its disability discrimination. Ask for an assessment of need for care and support under The Care Act 2014 for your brother, and your parents may want to ask for a carer's assessment for themselves. If Adult SS refuse saying the above, write a formal letter of complaint to The Monitoring Officer at your local authority, and ask how they are complying with The Care Act 2014 and Equality Act 2010? It is their job to ensure the local authority complies with the law.

No adult is forced to care for another adult under English law. Both your parents can say that they will not provide any care, and they don't have to give a reason. Once an adult with disabilities reaches 18, they become the responsibility of the local authority.

Ask yourself - if and when both your parents die, could your brother look after himself independently? If not, then its best for your parents to arrange supported living or residential care for him asap; so that they will be here to ease his transition by seeing him and talking to him on the phone; than it happen on the day of your parents' death, when the local authority will choose the cheapest placement, that has a vacancy on that day - which you or your parents may not like.

If the local authority still refuses, then your parents may act as a friend in litigation for your brother and seek judicial review (High Court action) against the local authority. Assuming your brother has no income nor assets, except his benefits, he will qualify for legal aid. Look for a firm of solicitors with a franchise for legal aid in community law - such as Irwin Mitchell. There are others, but I can't remember their names now. Explain the situation with regard to your brother and ask the solicitors' advice.

You could also make a complaint to the Local Government Ombudsman, but it takes longer. You can look at their website, find the adult social care section decisions and see what sort of complaints families make. You won't be the only one!

@Eggfriedpower

I wouldn't call my sister to her face fucking annoying-

No, you just bitch about her disability on the Internet. To other people who have that same disability.

You mean that you're never fucking annoying? I certainly am.

We're still perfectly capable (and in cases, more than that, absolute experts) of being utter dicks.

@Paulinna

Another autism thread wreaking with ableism.'He will just have to cope/manage/get over it' What’s the alternative? He will have to cope because there’s no other choice. Things cannot stay as they are. Apart from anything else, in the long run his parents will die and he needs to be able to live independently.

Hear yourself and check yourself. Lots of autistic adults can never live independently

@llmk

Another autism thread wreaking with ableism.

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

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

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.

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.

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

Autistic people can generally manage change if introduced slowly and given as much agency as possible and time to adjust, and in particular if there's a reason for the change rather than being imposed for no reason.

Can OP talk with her brother to come up with a plan - does he think it's fair if she never gets to see her dad? Does he understand the various needs all the family have? Can they come up with a plan when in a few weeks' time there will be a Tuesday he treats as a Thursday?

At least in my family we now all have autistic diagnoses, so when one child is struggling to cope and blames autism, we can say yes, we know, we're all autistic, and you find X difficult, but you still don't get to hit anyone or smash anything. Have a break in your room and I'll see you in a bit.

Does OP's brother have a safe room he can retreat to, away from his neice?

@WhereYouLeftIt

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?

Its not ableist to talk bout this reality.

Change will have to happen for certain circumstances. It could be parents dying or it could be other unavoidable live incidents.

A person in a wheelchair would have to deal with their house being flooded or their carer dying in a similar way. If they have no independence of their own or access to support prior to that life changing event it could make the situation which is already traumatic much more so.

Its not doing anyone in this family dynamic - whether it be the autistic brother, the parents or the OP - any good in the long run, because there is no long term strategy in place for coping with possible and predictable life events.

This is precisely what social services is supposed to be there for. If they are saying they arent, they are failing in duty of care and denying the responsibility they have.

In the OPs case its clear that there is a range in which the brother can cope with change if its managed and on his terms. He is not completely incapable of change and its actually insulting towards him to deny what he is capable of, despite being autistic...