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.

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.

It’s impossible to mitigate totally for the impact of disability on the family. It’s obviously hard not to get tired of it, to want some time “off” from that being what happened to your family. None of us can be accepting all the time. I’m sorry you’re finding your brothers disability is impacting your life so very much. I find it helps to remember that I do get time away from it in a way my disabled family member never ever will. I also am fine with being very pissed off about it all sometimes.

SS will let your parents look after him because it saves them the bother.

You have to be firm and tell them your parents can no longer cope so they will have to do something now. We has to do that eventually.

This sounds so awful for you and even more so for your parents. YANBU at all. It's possible to understand that it is not your brother's fault at all but that it is also intolerable.

Also, it seems he can tolerate some change somehow because he increased his day's at your dad's from 2 to 3. How did he achieve that? Could you replicate the process in other situations?

I understand that you've tried to get help already but would agree with others about really pushing for supported housing if you can. I know a 30 year old man who has just moved into a complex for people with ASD and learning disabilities. They have their own flats and independence but there is support available 24/7. It also has a cafe, shop etc where some of them are able to work.

@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.

So being so unable to cope that you don't eat for days is a hissy fit now?

My child has mild autism (although you're apparently not supposed to call it that anymore.... Though she's very, very different to those with severe autism like your Dbro)
and it's really difficult to know where to draw the line and say "Look you're being a bit silly now" especially as there are some deluded people out there who believe that a person having autism means they can get whatever they want, whenever they want it, always get their own way etc - coz Autism.
Well, call me mean but I wholeheartedly disagree! I'll preface this by saying that whilst it may not sound like it, I am extremely lenient with my DD and have moulded my entire life around her and making her happy & comfortable - as I should, as her (only) parent! However some of her demands are entirely unrealistic and often simply impossible to achieve! I have to say no multiple times per day, like any other parent and whilst I'm sympathetic as to why she wants something a certain way and always try to find a workable solution, I HAVE to tell her to find a way to deal some things sometimes.

Do you parents never try to explain to him that these demands are simply not workable sometimes? If yes, how does he react?

Ah op that’s tough. No advice really but I don’t think your being unreasonable.

@Boredmotherofone

The reason that mild autism is discouraged is because there is no such thing. Mild only reflects what you experience of your daughter’s autism, not what she experiences. I have had years of clinical depression/anxiety. Have been suicidal twice and it is extremely hard for me at times to live in this socially-orientated world. But these are very different issues that the parents of autistic children with learning difficulties.

I am very, very mindful that having a autistic child with severe learning difficulties can be extremely hard. I am not in this situation nor do I think I am qualified in any way whatsoever to speak for anyone other than myself. But there is no such thing as mild autism.

Has anyone considered making an adult safeguarding referral for him? He is vulnerable because of his additional needs, and the care he is recieving is putting him at risk, as evidenced by him locking himself in his room without toilet facilities or food for days.

I would also suggest that his parents be referred to social services for a carers assessment. Details at www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

One would think that at least one of those should open doors to the family getting the support that they all need.

My sympathies - it is truly a rubbish situation for everyone involved.

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.

It’s not all about him and he shouldn’t be in effect controlling the lives of 4 other people. It’s just not fair or realistic. He needs to accept things change and some changes gradually introduced plus him be advised flexibility does have to happen e.g. if one of your parents need an emergency medical appointment and the only slot is at 9.30am

[quote Scautish]@Boredmotherofone

The reason that mild autism is discouraged is because there is no such thing. Mild only reflects what you experience of your daughter’s autism, not what she experiences. I have had years of clinical depression/anxiety. Have been suicidal twice and it is extremely hard for me at times to live in this socially-orientated world. But these are very different issues that the parents of autistic children with learning difficulties.

I am very, very mindful that having a autistic child with severe learning difficulties can be extremely hard. I am not in this situation nor do I think I am qualified in any way whatsoever to speak for anyone other than myself. But there is no such thing as mild autism.[/quote]
She does not have severe learning difficulties. I am fully aware of what she experiences, thank you. She is nothing like OP's DBro! Her autism is actually very different than most. She has what used to be diagnosed as 'PDA'

She is just as friendly with other kids as any other child. Isn't bothered when routines are broken, just likes to be in charge.

Please do not diagnose my child based on a few sentences!

‘As others have said, it might be worth introducing the idea of routines changing in a few months and keep telling him.’

This ⬆️⬆️⬆️

This has to be done. It’s not that I don’t sympathise, I do, but you’re all his hostages.

Slowly of course, to minimise his distress, but definitely. Don’t ask him, tell him.
He probably will melt down, but it’s a learning process. You won’t get through it without causing him any stress, but you are all under stress now. Reassure him that he can cope, that he will be okay, he can do it.

Otherwise he’ll cope even less well , when things do inevitably change one day.
I’d be looking at supported living for him.

@welcome2021can't you get social services involved? Your poor mum having to live like that

Well I dont think YABU at all here! I appreciate that adults on the spectrum may find change hard ,however some sort of adjustment may help him to manage .Its hard for your DP too ,as they are missing out on family time with DGD. The National Autistic Society have a helpline and useful information as well .Sometimes being able to chat to someone who knows how you are feeling may help.

Is there no support because your parents have been happy to support. If they contact SS and say the arrangement isn't working and is damaging their relationship with their other children (you) what help would there be?

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

Can't your father occasionally prioritise his own daughter over his golfing buddies?

Boredmotherofone I might be wrong but I don't think Scautish was saying your child has severe learning difficulties. She was saying that she understands why parents think of autism as mild or severe but it is so much harder for parents to cope with children who have severe learning difficulties. So, in comparison, children like your daughter present as having mild autism. But, to someone who has autism themselves, it doesn't feel like a mild experience. So the term has been dropped. That's how it read to me, anyway.

[quote Scautish]@Boredmotherofone

The reason that mild autism is discouraged is because there is no such thing. Mild only reflects what you experience of your daughter’s autism, not what she experiences. I have had years of clinical depression/anxiety. Have been suicidal twice and it is extremely hard for me at times to live in this socially-orientated world. But these are very different issues that the parents of autistic children with learning difficulties.

I am very, very mindful that having a autistic child with severe learning difficulties can be extremely hard. I am not in this situation nor do I think I am qualified in any way whatsoever to speak for anyone other than myself. But there is no such thing as mild autism.[/quote]
Frankly, this is nonsense.

I say this as someone with diagnosed mild autism, who works with - amongst other groups - individuals with profound autism. My clients are non-verbal, usually doubly incontinent, live in residential accommodation, and are reliant on others for all their daily needs.

I live independently, work, and pay my own mortgage.

There is a fundamental difference in how I experience my autism - and the impact it has on my life - than the same diagnosis has for them. To to try and say they are somehow equivalent negates the experiences of those hugely vulnerable individuals.

There is, of course, a huge variety in presentation between people with autism. But to say all are equally impacted is denying reality.

Your brother can manage change; he changed from 2 days to 3 days at your Father's house. I know it is easy for me to say, but there is more than one person in the family, and your brother needs to learn that he cannot, always, have everything exactly as he wants it. Tip toeing around him, pandering to what he thinks he needs has made life very difficult, and will make the necessary changes to his future life even more difficult. There will come a time, in 20 or so years, when your parents will not be able to cope with him, so you all need to start, as a family, to ease the parental burden and at the same time, allow you and your DD to have a bit of time with your parents too. If he can;t bear to have your DD in the house, tell him to go to his room. Being autistic does not give him carte blanche for full on selfish and entitled behaviour, he is part of family.

because it is so much harder, not 'but it is so much harder', sorry.

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.

That sounds very like an unlawful blanket policy. Has anyone made a formal request for a care assessment under the Care Act 2014? If not, they should do so now, and if it is refused or if it results in no recommendations about care, you should look at getting advice from solicitors specialising in community care law. You should be able to get legal aid in your brother's name.

I'm no expert, but as I understand it a basic principle is that there shouldn't be an assumption that family members give up their lives in carrying out caring responsibilities that by law are the local authority's. As people have said, no-one is doing your brother any favours by allowing him to get so dependent on your parents, and the council should really be encouraging him towards some sort of supported living arrangement.

Your parents need to get in touch with adult social services and say “I am a carer for my adult autistic son, we need some support and I want to undergo a carers needs assessment.” Then they are looking at what support your parents need to continue as carers not just your db’s needs.

That could include respite, it could include help putting strategies in place to help him manage outside his routine.

I have a disability and at least locally it seems carers needs assessments are the only way to get external support. The minute someone’s parent or wife says “I am a carer and want my needs assessed” they get treated differently to those of us (who often have similar needs) who live alone and get refused support.

I know what pp means by mild autism, even if people wish to describe it differently it is a spectrum, and having family members at both ends without LD I find I need to quantify my dd autism as otherwise people would not understand.

Op, i agree with many pp and unfortunately we had to do the same . There is no support if there are family, but expecting your brother to move into supported lodgings on the death of your parents will be harder in the long run than your parents informing SS that they can no longer cope. We had to fight and were made to feel awful by SS, the docs and especially the family member but (incidentally after support on here-if I can remember my user name I will find the post) we just kept refusing until help was provided.

They now live in supported lodgings and for the first time have, well not quite friends, but people outside the family they enjoy socialising with, they have also had a relationship although on very simple terms, the family are now able to help and visit but are careful to maintain outside support. Bloody hard time but the alternative would not have worked. You can never house your brother because otherwise your DD will be writing this post in 20 years. Sending you it's hard.

It is extremely difficult OP, but your brother has to learn to cope with changes. My DB is very much like this, and he does get stressed, but we keep saying to him that nobody needs to do only what he wants them to, if he doesn't like it he can go to his room.
Our neighbour's son is autistic and they constantly talk him through dealing with change.
It is not easy, but you have to be resilient to his demands. His desires do not trump everyone else's.