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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Autistic brother makes it impossible for me

363 replies

IAmHereButNotHere · 16/08/2021 12:58

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.

OP posts:

Paulinna · 16/08/2021 13:27

It sounds like he won’t cope when your parents die, or when they get a bit older and can’t look after him. He needs to be on social services radar now. If that means withdrawing family support to get them to take him on, then that might be what you have to to do.

The other issue is that you’re all obviously tiptoeing around him. If he can’t cope when his routine is disrupted - well that’s tough, he’ll just have to not cope. And the fact is he will never learn to cope as long as you all keep tiptoeing.

2reefsin30knots · 16/08/2021 13:28

It sounds to me like the whole family need more help to increase Dbro's independence.

Have you explored the local charities and organisations who could offer advice and signposting?

danni0509 · 16/08/2021 13:28

I don’t think you’re being unreasonable. No.

But it’s your mum I feel sorry for.

2reefsin30knots · 16/08/2021 13:30

What does 'not coping' look like for Dbro?

Eggfriedpower · 16/08/2021 13:31

If he can't cope he can't cope, not doesn't want to.

QueenofBrickdon · 16/08/2021 13:31

It's difficult I really feel for you. I have an autistic 9 year old and am waiting for an assessment for myself.

What we constantly tell my son is that it's ok for him to have routines but he cannot control what other people do.
We also go through the following day with him every evening. He likes to know in detail what is happening.

cansu · 16/08/2021 13:31

I think they absolutely have to challenge that decision by social care. He can and should be given a support as an adult. There are many options such as supported living which should be investigated. You need to probably find a solicitor who deals with social care. He should be assessed. What is true is that your parents will need to push and be willing to say that he needs to move out. I would also get him on the housing register at the council.

Original poster

IAmHereButNotHere · 16/08/2021 13:33

@2reefsin30knots

What does 'not coping' look like for Dbro?

He can't cope - he shouts and can be quite scary with it, he stops washing (washing is part of his routine so he does it) he stops eating he has been known to lock himself in his room and refuse to talk to anyone, mum had to get the fire brigade out when he did it once as he'd been in there for 3 days, he doesn't have an ensuite so she wanted him out.

OP posts:

ineedaholidaynow · 16/08/2021 13:33

Does he have a social worker? Your parents are probably going to have to tell social services they can't cope for you to get any help

TheSoapyFrog · 16/08/2021 13:38

There is help out there. My brother, age 30, is autistic and is currently living with our parents. Adult social services are involved and he has a support worker who comes out to him. My mum had to fight like hell to get him the help he needs though. He also has mental health problems and is now on medication.
My mum has worked with autistic children and adults with learning disabilities so she has been able help my brother adjust to changes to his routine using her experience.
I do understand the frustration as there are things I feel we've all missed out on as my mum has to put my brother's needs first. I now have an autistic child myself so I now understand where my mum has been coming from all these years, because I have to put his needs first, even above his twin's and even if it makes life harder for everyone else.

Theworldspinsonmyhead · 16/08/2021 13:38

He sounds extremely controlling - has Pathalogical Demand Avoidance been considered?

Supported living may be the way forward here - your parents need to say they are not coping with him and his demands and he needs to leave.

2reefsin30knots · 16/08/2021 13:39

@Eggfriedpower

If he can't cope he can't cope, not doesn't want to.

He can't cope at the moment, but that doesn't mean his independence couldn't improve and he couldn't learn more coping strategies.

OP, I'd start making some phone calls to local organisations and branches of charities to see what advice is available.

alrightfella · 16/08/2021 13:39

The problem is the long term situation.

At some point your parents won't be around and what happens then. Much better to work towards him having an independent life now (even if he can't ever live properly independently).

Sorry if I've missed how old he is. I assume he's not working? If not how is he filling his days?

Blueuggboots · 16/08/2021 13:40

Gosh that sounds so hard for you and I don't think you're unreasonable at all.
As others have said, it might be worth introducing the idea of routines changing in a few months and keep telling him.
My son is autistic so I do understand but we introduce changes with lots of warning to help him cope.

Artichokeleaves · 16/08/2021 13:43

I hear you. Autism also controls several generations of my family, and however much you wholly understand and appreciate that intolerable stress, distress and overwhelm for your loved one is involved and they did not choose this, and that the consequences of not doing what is needed to cope is worse than the consequences of doing it.... it is very hard on other family members too. Everything else and everyone else always has to come second.

Seymour5 · 16/08/2021 13:45

There are a couple of young men with autism who volunteer alongside me. Both live in independent, shared, supported housing. As parents get older, and perhaps frailer, it is not realistic to expect them to have the sole care of another adult.

You are not unreasonable OP. I think the family need to consider the wellbeing of each individual, and look for a housing solution that helps you all. Does your brother have any organised activities, or volunteering opportunities?

InvincibleInvisibility · 16/08/2021 13:46

Yanbu

No word to help really, just to say your feelings are completely normal.

DC1 has AdHD and anxiety and I try so so hard for it to impact as little as possible on DC2. DC1 wants to control his world and everything/everyone in it but we're forever telling him its not possible and not fair.

When he was little it was so much easier just to let him choose stuff but as DC2 grew to be a toddler it just wasn't fair (helps that Im a 2nd child so felt loads of empathy for DC2 )

parietal · 16/08/2021 13:47

can he learn to break the routine if he has advance notice? So if you give a week's notice that your mum will do something a little bit different on Monday, and he has time to process that in advance, would he manage? for example, when Christmas comes around, does the routine change at all?

If he can, then start adding little bits of change into the routines so that he can learn that change is OK. It sounds like, at the moment, he is v anxious that a change in routine makes things go wrong. And he needs to gradually learn that routines can flex and the world will not go wrong. but he has to understand this & want to learn it too.

Scautish · 16/08/2021 13:48

YANBU

I have Asperger’s but I know that I cannot speak for any other autistic person as, like neurotypicals, we are all different. But I think your situation does sound extremely difficult but given he has decided to change from 2 to 3 days (ie a change he instigated) then that possibly indicates that change is possible, but with lots of advance warning?

I hate changes being out upon me without notice, but if I am told of a change in advance, I may huff and puff a bit but gradually my brain gets used to plan and it’s ok. I am aware there is give and take needed.

But I don’t think you are unreasonable to want to try to make life a little more accommodating to you as it seems like possibly your brother is being a little selfish as your mum and dad are accommodating everything he wants so he is taking advantage possibly?

But I may be being totally unreasonable suggesting this as I don’t know exactly how his autism affects him.

MatildaTheCat · 16/08/2021 13:51

Is he getting all the state benefits he’s entitled to? If possible some of these could be spent on some specialist support for him. He sounds really quite disabled so should be receiving a decent amount for someone living with their parents.

Thighdentitycrisis · 16/08/2021 13:54

Maybe your brother can connect with some online community with other people in the spectrum, it might possibly help with strategies for managing his routines in a peer to peer structured way?

bowchickawowwoww · 16/08/2021 13:55

@ClaryFairchild

And what happens if one of your parents falls ill? Will you be expected to pick up the pieces? The sad reality is that parents usually pass away before their children - your DB sounds like he wouldn't cope if anything happens to your parents at all. And living like that is a recipe for your parents to to get ill. None of this healthy for anyone.

So what would you suggest?

user1471457751 · 16/08/2021 13:56

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.

Acarp · 16/08/2021 13:58

So how do you suggest they magically make him able to cope, @Paulinna?

AgnesNaismith · 16/08/2021 13:58

YANBU OP

I am also a sibling of a person with a disability and it can be really tough. There is a charity called ‘SIBS’ specifically for us, they have support groups every month and a huge amount of resources. It’s ok to want to be put first sometimes.

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