Autistic brother actively avoids me- family life impossible

[Beachbaby1234]

I have an adult (40 year old) brother who has been diagnosed with “high functioning “ autism. I don’t in any way mean to minimise his needs, just to describe things as I have experienced them. He is a highly intelligent, capable and funny person with lots of specialist interests. He attended a mainstream school and although he struggled socially as a teenager, he achieved incredibly highly and was a well-liked member of the community. He once played a large part in a school drama performance, took part in sports and had dreams of becoming a radio broadcaster. He had many attributes and motivations and my dad ensured he actively contributed to household chores and family relationships. However we have never had a good relationship and since my dad passed away suddenly it’s seriously deteriorated.

My brother has never left home. When he finished school at 18, he’s had one job which my dad secured for him through a support programme. But one day he refused to go and began to get into a really dysfunctional patterns that have lasted decades. He generally gets up in the evening, expects his dinner to be made and gets upset with my mother if it isn’t. He spend his days watching tv, buying items on internet for his specialist interests and then returning to bed. He doesn’t contribute to family life, do any housework, come out of his room when family visit and has never bought me a birthday card or even called me to say congratulations when I had my children.

He lives at home with my mum who is in her late 60s and for the last 15 years my mother has done absolutely everything for him. She cooks, cleans, washes his clothes, signs on to his benefits for him, organises doctor’s appointments and generally parents him as if he is still much younger. Throughout my childhood if there was something he didn’t want to do, he would retreat to his room threatening to hurt himself (which he never actually did). This pattern of behaviour ruined countless family events and meant that for a large part of my adult life, I never got to have a relationship with my parents as they were always having to deal with my brother. They wouldn’t leave him overnight to visit me, or even be on the phone to me for long periods of time because he would get upset and demand they got off. It was incredibly painful and I spent a long time struggling with my own self worth as an adult, I believe as a result of growing up in this environment. I didn’t feel my parents managed the situation well and often pandered to my brother’s needs by doing things that he was capable of doing for himself. I felt that this was often to the exclusion of mine and my other brother’s needs (my younger brother also has severe mental health issues and has been institutionalised most of his adult life). I have since had some excellent therapy and drawn a line under this for the sake of my relationship with my mum.

Over the last year I moved closer to my mum as her health isn’t great and I wanted to help. She also wanted to spend more time with my children. I had several conversations with her voicing my worries about the future and how things will be managed for my brother when she isn’t able to continue. I’m concerned that he has zero income, independence or motivation for things to change. I also spoke to my brother about taking a bit more responsibility for helping my mum with the housework as she is now struggling doing all of this on her own. He initially agreed he wanted to help out more but since this he has completely retreated. He now stays in his bedroom until midnight every day, doesn’t leave the house, refuses to come out of his room if me, my partner or our kids visit and will actively leave every room I enter. He even ignores my young children when they speak to him which I find incredibly painful. I have spoken to my mother about how much this behaviour upsets me but she told me ‘what did you expect, when you talk to him about the future? You make him anxious’ and she blames me for ‘expecting too much from him’ and ‘not understanding his autism.’ She justifies his behaviour as self protective. Basically, he needs to protect himself from me. And she denies that he is acting in any way badly towards me.

I feel completely at a loss on how to resolve this situation. I feel like I am being made to feel responsible for my brother’s behaviour even though this has been going on for years. I am hurt but also so frustrated with my mother. I feel really angry as I suspect that my mother assumes I am going to step into her shoes and provide him with care after she’s not here anymore (I am not). I feel like I am at a point where I might lose my relationship with my mother over this as I feel that the house is an uncomfortable one to be in now. AIBU to feel upset about how my brother is acting towards me? Thank you if you managed to get this far.

OP

You are very much not unreasonable.

Just tell the you’re not going to step in her shoes, if you’re not going to
be really clear to them both.
then it’s up to them to figure out how to manage it. And you can step back, there’s no situation for you to resolve and you don’t need to keep talking about it as it sounds like you may be bringing it up regularly, i imagine that’s not helping.

You can ask brother for a clean slate, or explain how he makes you feel
or just leave him to it, he’s going to leave the room so just pretend he’s not in,

or have your mum visit you
or unfortunately, don’t visit your mum as much. Not much else you can do, You can’t control how he wants to act.
you can’t fix it if no one else wants to fix it

So how are things going to work when she's gone?

Not planning for it can create an even more traumatic situation for all involved when the time comes.

Quite honestly she's been selfish because she doesn't want the stress. The stress you will be under when you've just lost her and your brother is having a meltdown over it. Whether you take him on or not.

She's not protecting him from you. She's protecting herself from facing up to the fact she isn't going to live forever.

So the conversation you need is with her not with your brother around at all.

Your dad's death is also important. She hasn't got anything else in her life. She has a desire to be needed. It's a codependency situation that's arisen. Her purpose is your brother 'needing' her - and she's doing more than she should.

She needs some other focus in her life...

YANBU your feelings are valid.
Your mum won't change at this stage. Nor will your brother. The only thing I can say is you need yo detach and just not mention it anymore. Help your mum as much as you can and research arrangements your brother so it's all in place for when it needs to be.
I wouldn't mention not looking after him unless someone specifically asks - the just be honest.
It's hard but you must detach and not let this run you.

You've got this.

Ah that’s really hard for you. I would say your mum is now so used to doing everything for him, she doesn’t realise it’s actually very unhelpful. However, if he used to have a job he probably would be able to self care if she passed away or went into care (to a basic level.)

As hard as it is I would say step back. It’s not fair on your children to be ignored and it doesn’t sound like your mum will prioritise a relationship with them over your brothers demands. I would talk to your mum though and make it crystal clear that you won’t be caring for your brother when she is unable to and she will need to make arrangements. I’m so sorry your mum doesn’t prioritise you and don’t go feeling guilty about the lack of closeness with your brother- it’s definitely on him and nothing to do with you. He doesn’t deserve your attempts at a relationship.

I'm glad you're clear that you're not going to become his carer when your isn't able to anymore - you don't need to sacrifice your happiness for him, or expose your children to his negativity.

Is there anyone who your mum might listen to about him - doctor? Priest? Family member? It is very sad that he seems to have regressed, and has created such a small life for himself, but you can't fix him.

As a PP said, can you have your mum go to visit you, so you have some time with her.

So sorry you're going through this

I’d be making it very clear you won’t be stepping into her shoes when she passes or becomes infirm and that her refusal to address the situation is only hindering your bothers development and ability to function without his mother.

Your parents have enabled and facilitated him and massively hampered his possibilities by allowing him to withdraw so much.

@Beachbaby1234 massive hugs. Tell
your mother you love her and brother. But you will not be his carer. And if she truly loves him she will start to talk about the future with him. Otherwise she’s leaving him crippled in the cruelest way when she passes.

She’s piggy in the middle, bless her. She’s had a crap life really, hasn’t she?
Please don’t abandon her.

Your brother staying in his room when you visit helps with dealing with this situation, because it means that you or your children won’t need to interact with him at all.

Also, get your mum round to your house sometimes, or take her out for lunch etc. And stop discussing him with her. She needs some treats and pleasure in her life, not constant misery.

I'm autistic and can tell you that I ignore family members and their children if I just have no interest in what they have to say. It's not personal or an attack he just doesn't like what you have to say and sees conversation as either pointless or uncomfortable. Logically why would he want to engage with that? I wouldn't. You shouldn't take it to heart.

The idea that you want to abandon your mum is a separate matter, why if he stays out of the way would you need to do that? He's not aggresive or in your face. Just carry on as if he's not there. Are you sure he's the reason and this isn't an excuse?

And you're right you absolutely shouldn't care for your brother when your mum dies. He can figure it out for himself.

Your mother has done a huge disservice to your brother not teaching him how to live. And a huge disservice to you by missing out on a relationship with you by doing everything for him. Make it very clear to both of them you will not be taking up the job. They both need a huge wake up call

I feel for you, OP. What an incredibly frustrating situation.

Your mother sounds like a loving lady, but her well-meaning actions have stopped your brother from working on the skills he needs to live independently.

You said that you “suspect” that your mother is expecting you to step into her shoes as she ages or passes away. I think you need to have a very clear and explicit conversation about this where you make it absolutely clear that you will NOT being doing this. And this refusal needs to be framed within the context of a broader conversation about, what is the long term plan here? This man urgently needs some structured help to get him independent.

He won’t change unless forced. I would talk to your mum and ask her what she thinks is going to happen when she can’t talk care of him? If he is lucky he will end up in care. He most likely will end up homeless. She is the only one who can help him by stopping doing everything. Support her in getting social workers involved now to facilitate him moving out and gaining independence. Make sure your mum understands you won’t take him in, as that is probably what she assumes will happen.

https://www.mumsnet.com/talk/relationships/4783334-married-to-someone-with-aspergersasd-support-thread-8 Although this is obviously your brother not a partner, this thread might be a good place to talk to others, OP.

I’d start to step back a bit, she’s not going to change her behaviours at this point. She needs to face up to the fact that her son is on his own once she’s passes, and so does he. I’d make that clear, but don’t labour the point. He’s just going to have to learn to do stuff for himself, 40yrs old and expecting his dinner on the table whenever he feels like getting up is ridiculous.

Your parents let your brother down by not encouraging him to become more independent. The second he struggled they took the path of least resistance and let him retreat. I would make it very clear to your mother that you won’t be following in her footsteps and if she doesn’t start making plans for his future it will be very hard for him.

At your brother’s age his behaviours are pretty ingrained and the relationship that you want and you’d want him to have with your children is going to be very difficult, especially if your mother is an obstacle. Maybe you could seek professional advice.

Support for autism back in the day was terrible and your parents probably did the best they could not realising that long term, their best was not in their sons best interest.

What an odd post. Why does your brother being upstairs in his bedroom impact you visiting your mum? When does he have an opportunity to ignore your children if he doesn’t get up till midnight? Why would his “income” be any less when your mum is gone? Why don’t you suggest a cleaner if things are getting harder for her?

you sound really critical of a woman who has managed to raise three sons and allow the one that doesn’t have major disability or serious MH difficulties to reach maturity independence and have his own family free of caring. Personally I can’t believe you don’t give her a day off every so often.

i have and asd son and this thead gives me the fears ! Bit I also recognise so much

but I do agree that you and your mum deserve a relationship and nice times together

and you both deserve the relationship but maybe things need to change in how you interact ?

i also see no malice in his behaviour , its just how he is and the anxiety is clearly major

but of course its impacted you

but maybe you need a pause and a reset

also maybe she does need a plan but she’s only 61
maybe a more critical project is resetting how you two engage and spend time
and building a different relationship x

What are the financial plans for the home?
Because honestly after living your life as a glass child if she's going to hand him the house and you nothing I'd drop the rope and tell them to enjoy the rest of their miserable lives together.

He can rot after she is gone and she can spend her final days knowing that they are both alone.

I am reading a book at the moment "How to raise an adult" by Julie Lythcott-Haines. I saw it recommended on here.

I think the most positive thing you could take from this situation is to bring your own DC up to be resilient and independent.

See your mum only outside the house. Have one serious, clear conversation where you make it clear you're not taking on your brothers' care and she should plan accordingly (I assume there may also be expectations around the one who lives in an institution?)

Make sure you and DH are on the same page before this conversation.

Try to find some compassion for all involved - probably easier on you psychologically than how you feel now. Seek your own advice (charities?)

I have and autistic teen ds and this thread scared me too!
My son can be violent and aggressive and it is tempting to follow the path of least resistance so that me and my dd are not living in a state of high alert all the time. I do fear he will end up like the OPs brother.

What do people mean when they say encourage him to live independently? He refuses to make a slice of toast for himself, l( even though he can) but will have a massive meltdown because he's hungry!!

I have an autistic brother and I suspect both parents are too ( no one has been diagnosed) he has a job (chosen for and application completed by his mum) and a house (sorted out by and large lump sum provided by parents think tens of thousands they won’t even buy me a cup of tea). None of them even acknowledge my existence these days or ask about my children it’s like I don’t exist. I think you have to leave them to it they can’t change but try and spend some nice time with your mum away from the house good luck x

MackenCheese

it’s hard isn’t it ? I have so much compassion for op -but also for her mum and her brother

remember that we are in the eye of the storm right now as we have teens so double the issues as hormones etc

I also have the younger one criticising me as I pamper to eldest ! In his eyes
totally hard x

My daughter is in a similar situation,give it 10 years and she will be writing something like this .
im mum ,and I’m completely stuck
he has a social worker,but as he’s happy at home she won’t help him move out .
he won’t let me put him on the council waiting list
he doesn’t meet the criteria for assisted living ,lord only knows what the criteria is if he doesn’t meet it ..
im lost
I don’t even like him
I’m living with an angry ,aggressive man ,who doesn’t wash or leave the house or do a single thing for himself,selfish doesn’t even come close .
dad is a waste of space when it comes to anything other than earning money .
well ,op at least you know your not alone ,but I’ve no advice,sorry

I'm here too. I don't think all the people putting blame on the mum for enabling him can have experience of living with a child like the OPs brother.

Some people with autism can be high function but can't manage what life demands of them- with my child, every little ordinary thing is a battle, including toileting and teeth cleaning. They're really young, but have been known to just give up hobbies for no apparent reason (seemingly spur of the moment) and not go back. I guess what will have happened is the leader tried to give them an instruction and then follow through a make them do it.

When they can't cope with even basic life demands, I have no idea how they'll cope with a job. Or independent living. Despite being really bright.

Inevitably they're also the focus of the house. The older child has to be independent because so much attention is on the middle. The youngest doesn't get the attention she deserves and muck around, copying the off-the-wall-refusal-to-do-anything behaviour of her middle sibling. DH and I are shells of our former selves because it's so exhausting ALL the time trying to juggle everyone's needs.

I often really feel for the siblings as they are growing up in a madhouse where there's not enough attention to go round. However we do also acknowledge this and try our best to "devide and conquer" so the others get some time too.

I have no idea what the future holds for us. We're a long way from adulthood and maybe they'll learn to be independent. But if they don't, the future you describe with a live-in adult child who can't/won’t do anything to keep themselves alive doesn't sound unfeasible to me. I'm not sure my sanity would take having them live with us in adulthood be honest, but equally I dread to think how squalid their life could be if we tried to make them independent.

I think your mum sounds like a saint OP, albeit one with a very difficult life. She may well be right, you may not fully understand your brother like she does. However, I also think it's absolutely fair enough that you don't want to take his care on when she can't do it any more, and having that conversation with her about what she's planning for and making your expectations clear could be a valuable one.

I also totally understand where you're coming from through as it's totally not fair on siblings to grow up in a house with is so dominated by the needs of one individual. I HATE seeing what its doing to the other children in my house, however hard we try to be fair. It's something that must be common to a lot of people who have a disabled sibling- have you looked for support groups for other adults who have been through similar?

What an odd post. Why does your brother being upstairs in his bedroom impact you visiting your mum? When does he have an opportunity to ignore your children if he doesn’t get up till midnight?
Well, I'm guessing he comes out to use the toilet at least?

Why would his “income” be any less when your mum is gone?
I'm assuming the OP means that he is relying on his mother's income right now but that won't be there forever?

Why don’t you suggest a cleaner if things are getting harder for her?
Why are you assuming everyone has the money for a cleaner? I have a cleaner 2x a week, and cleaners basically help with big jobs - they are not in your house most of the time and are not spending their days dealing with all the washing up, tidying, picking up and cleaning that still builds up in the course of an ordinary day.

you sound really critical of a woman who has managed to raise three sons and allow the one that doesn’t have major disability or serious MH difficulties to reach maturity independence and have his own family free of caring. Personally I can’t believe you don’t give her a day off every so often.
I'm imagining the OP is a bit frustrated because her mother, while caring, has to a certain extent enabled the extreme behavior. Why is it the OP's job to rush around caring for her brother? He is not incontinent or non-verbal - he should be taking care of himself at a basic level at least.