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Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

Autistic brother actively avoids me- family life impossible

176 replies

Beachbaby1234 · 04/07/2023 23:43

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 posts:
ZairWazAnOldLady · 05/07/2023 14:50

I think there’s an underlying misunderstanding here, it’s not about Allowing the child (or man) to opt out of the hard bits, or not letting someone get away with it. Not all people can be disciplined into or made to try harder to overcome their disability. Sometimes you just won’t find a work around or a fix. Just as some people never recover from depression and with the best will in the world walking isn’t possible for some. Some autistics can use enormous amounts of energy to manage things you or I can, some can’t.

Canyousewcushions · 05/07/2023 14:54

ZairWazAnOldLady · 05/07/2023 14:50

I think there’s an underlying misunderstanding here, it’s not about Allowing the child (or man) to opt out of the hard bits, or not letting someone get away with it. Not all people can be disciplined into or made to try harder to overcome their disability. Sometimes you just won’t find a work around or a fix. Just as some people never recover from depression and with the best will in the world walking isn’t possible for some. Some autistics can use enormous amounts of energy to manage things you or I can, some can’t.

Thank you. This is a much better way to put it than I had managed!!

Aquamarine1029 · 05/07/2023 14:56

All you can do at this point is make it crystal clear to your mother that you will not be providing care for your brother as she gets older and after he dies. Your mother will have to make arrangements for him.

Caradonna · 05/07/2023 15:00

I think the OP is getting a hard time - her DM wants to see the DCs and already for some reason needs help with cleaning and garden despite how ‘young’ posters say she is.
I suspect too that when Op visits she gets a bit distressed that DS retires to the bedroom and probably feels guilt that her wish to see her DGCs upsets his routine - posdibly he makes it clear to the DM that he feels put out.
No win situation really. Perhaps the DM is very happy with her caring role but the fact the OP moved nearer to help suggests not.
I think the OP used high functioning of her DB to explain why,in her view, SS won’t help.
Get Charities or SS involved but if neither Db nor DM want it what can she do?

Begonne · 05/07/2023 15:03

It might be helpful to think of this situation as three separate issues.

The first is your anger towards your brother and mother. It’s entirely understandable and I have enormous compassion for you.

The second issue is your mother’s increasing care needs, and how that can be managed.

The third issue is the plan for your brother’s care when your dm passes.

I think the anger is clouding your judgement which is why I’m saying separate the issues mentally. Try and find a counsellor or therapist (preferably with experience of autism) because you need a safe place to express and process this. It’s huge, and sad and very important. And you deserve to be heard, and validated and find peace.

Frankly your relationship with your brother is neither here nor there at this point. Nothing you’ve described is out of the ordinary for an autistic person. It is easier to deal with people if you can find a way to accept their short comings rather than waste energy on feeling they should be different. There is no magic wand that will turn him into a person who sends congratulations cards.

Both your mum and brother deserve good care and support - and (unpopular as this view is on MN), I believe that as the last competent adult standing the responsibility falls on you. Not to provide it personally if you choose not to, but to put the wheels in motion, to access available supports.

You could look into what services will be available, what people will need to be contacted, and who to co tact now.

Discussing an uncertain future with an autistic person is not going to play well. It would be better to liaise with his service providers and work out what his future will be, and then present a solid plan when the time comes.

A good first step would be to apply for an occupational therapy assessment for him. OT can help with building independence if that is what is needed.

I suppose what I’m saying is that you need to accept your mum and brother as they are, and work out what to do. Not make plans for if they were different people.

I hope that doesn’t come across harshly - it’s meant with kindness. I’m sorry for what you’ve been through,

orangeflags · 05/07/2023 15:05

@ZairWazAnOldLady Yes. The day after mum died we had an emergency meeting with a social worker who had to get very quickly up to speed. We had a few horrendous months which included my brother having a six week hospital stay but he was discharged to a fantastic care home. He lives really happily with friends, his stress level is low and he is encouraged to do things for himself. He rang me this morning to say he had cleaned his room and the kitchen. He is proud of where he lives and is living his best life now.

ZairWazAnOldLady · 05/07/2023 15:15

@orangeflags thats a fantastic outcome. Thank you for sharing what really does happen next I’m sure it’s really reassuring to OP or others in her situation that even without an ideal start safety and happiness are possible. 🙏

SAH07 · 05/07/2023 15:16

I'm not sure if this has been raised, but I've witnessed the aftermath of these situations in my job. Adults who have lost parents who previously did everything for them. They are left in the house alone and cannot cope.

The houses fall into disrepair, when things go wrong they don't know how to fix them. The toilet blocks, therefore they start using the sink and bath instead. They don't take their rubbish out, or clean and leave piles and piles of rotting food. Rats, mice and cockroaches like the environment and move in. The neighbours start to complain. Its very upsetting seeing someone live like this, the house gets cleared and the cycle then starts again.

This is the reality if plans aren't put in place

ZairWazAnOldLady · 05/07/2023 15:23

It sounds like there must be a middle ground between @orangeflags outcome and @SAH07 ‘s.

ArseInTheCoOpWindow · 05/07/2023 15:34

gamerchick · 05/07/2023 13:34

My autistic 16 yr old is at this minute doing chores. Don't dare tell me I'm being anything. Life skills can absolutely be taught to 'so called' high functioning autism. Doing everything for them does them no favours. Or you end up with this situation.

But since you're offering to take him on. I'm sure the OP would be relieved to hear it

If only my ASD Dd could be like this. School burnt her out so much she could hardly do anything or speak

Getting her to do chores was impossible. She was totally demand avoidant. She did some when younger but it has become impossible now. I’m just trying to get her better.

ASD burnout is a dreadful thing.

orangeflags · 05/07/2023 16:26

@SAH07 yes, I'm sure if my brother had inherited my mum's house and been given the option to live there this would have been the case. As it was he didn't inherit it (there's a trust fund for him that I look after) and there was no way he could stay as he lights fires if he's alone. So there wouldn't have been a house left anyway as he would have burnt it to the ground pretty quickly.

Beachbaby1234 · 05/07/2023 16:26

Again, thank you for these replies. I am grateful for everyone’s views and stories. I am also aware that this topic raises really emotional issues and strong feelings (understandably). Ive not found it easy to raise the emotional costs of living with a sibling with ASC for lots of reasons. And I really do have a lot of compassion for those people struggling with these issues from any position. I don’t think there are any easy answers.

Both my brothers have diagnoses of autism, and both present with very different strengths, aptitudes and challenges. I have been involved with ASC charities (personally and professionally) much of my life, motivated I guess, by my experiences growing up. However, I know I still have lots of work to do and that this in no way means I can ‘understand’ the autistic experience. If anything, I’m sure I have blind spots. My children have a great relationship with my other brother and my partner and I are 100% committed to giving them a positive education in neurodiversity as they grow up. I feel part of the problem is that my older brother has a very difficult personality and can be incredibly nasty, which is not related to his autism directly. I agree that it’s totally possible to be neurodivergent and also a nasty person. But it’s very difficult to see things objectively when the subject is your family and emotions inevitably run higher.

Reading back, I can see that my post perhaps sounded as if I expect my brother to suddenly start ‘pulling his weight’ more and living independently. I don’t expect this to happen or think that it is even possible for him at his current level of functioning. I do however admit to feeling sad and frustrated at his recent lack of engagement with me and my kids and how he seems to have no interest in helping my mum out more with tasks he took pride in doing (until my father died). The birthday presents and days out with my mum are irrelevant in the grand scheme of things, but still a loss. I believe I’m entitled to all these messy feelings.

My mother is 68 and (perhaps from years and years of caring and the sudden loss of my dad) her health has declined rapidly, hence the reason this has all come to the fore. She had to be cared for by us for a period following emergency surgery last year where it was pretty touch and go. During this time an aunt moved in to support my brother and he honestly seemed to thrive (getting up earlier, making his own sandwiches, taking a shower every day, doing some exercise, chatting to her for hours about his interests). This aunt won’t be in a position to help more for reasons I won’t go in to. Whilst I’m aware that this could also have been him masking during what I’m sure was a stressful experience, it perhaps goes some way to explain why I likely harbour some resentment, as people have suggested, towards my mother and brother for returning to a really dysfunctional and extreme pattern since living together again. This isn’t his fault. But it’s not mine either. I think looking into some professional support to have some hard conversations is definitely the best way forward for us all.

OP posts:
QueensBees · 05/07/2023 17:06

I think looking into some professional support to have some hard conversations is definitely the best way forward for us all.

I agree there.
Because the risks involved with your mum health suddenly deteriorating and your dbrother not coping at all are huge.
Incl you being dragged into caring for him which, it seems to me, you would BOTH be resentful about.

Im wondering if the aunt that was involved when your mum went to hospital could also help there. She just have seen the impact your mum being unwell has and she might well not want to be dragged into caring for him either.

QueensBees · 05/07/2023 17:12

Also, I believe your dbrother is the only person who can change some of the things you have an issue with. And I do not mean ‘pulling his socks up and getting on with it’.
But anything that he will put into place to help him cope has to come from him. (I’m thinking knowing when he is getting overwhelmed and telling people he needs time out. Or being able to recognise he struggles with the noise children make so taking himself out or using ear plugs/defenders etc…). If he refuses to engage or doesn’t have the insight, I’m nit sure you can ‘make him’ do things differently iyswim.
Same with having the i sight to know what was the difference between now when when he was younger and doing more. Or now and before when your dad was still alive.

So I wouldn’t engage with him in those subjects (or talking about the future). He doesn’t trust you enough to be able to have that conversation anyway.

orangeflags · 05/07/2023 17:18

My mum infantilised my brother down to laying out his clothes and helping him put his t shirt and jumpers on. He well knew how to do this and his behaviour was so much better when someone else was looking after him too. When she got very old I would make their lunch and give it to them both on trays. If he wanted some ketchup she would tell me to go and get it for him (for example) when he was perfectly able to fetch it himself. She waited on him hand and foot and expected others to do so too.

It did him no service to not let him do things for himself

creasedclothes · 05/07/2023 17:39

Your feelings are valid. The irritation you feel about your mother's life, the relationship that you could have had together, the relationship you could have had with your brother if things were different. It's all understandable.

But things are how they are. Your brother's needs are what they are at the moment, and whether or not they are partly due to your mother is by the by. It is her relationship with her son, and she is managing it the best she knows.

It's ok to vent and say on here or to your partner that it pisses you off, but don't try and change them. It'll only lead to bad feelings on all sides. Your mother's relationship with her son is their business. Your relationship with both of them is your business and you have control over that.

HaveYouHeardOfARoadAtlas · 05/07/2023 17:49

Frogpond · 05/07/2023 06:27

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.

She’ll may well leave the house and everything to him and him alone and he’ll carry on living there. Be prepared for that. A friend had similar

IJustHadToLookHavingReadTheBook · 05/07/2023 18:14

I have a sibling and uncle with ASD. Very similar situations; both relatively mild but have lived with parents into their 30s and beyond and been allowed to regress from carrying adult skills they at one point did have. It's very hard when you're the "normal" sibling in that situation. I also think one of my parents- the one with the ASD brother- has ASD but it's not a subject that we can discuss.

My only advice is to try and remove yourself a bit. You can have a close relationship with your mum without really being involved with your brother. And yes you will have to pick up the pieces when your mum dies and you're left with the responsibility of your brother, but there are options including sheltered housing etc. Just deal with it hate in front of you as best you can right now and don't worry too much about the future.

luckylavender · 05/07/2023 18:30

ZairWazAnOldLady · 05/07/2023 06:58

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.

Well he doesn't work so that's why his income would be affected. You could read the post instead of being so condescending.

Thisisworsethananticpated · 05/07/2023 19:16

IJustHadToLookHavingReadTheBook

i gently say that their autism cant be that mild if it impacts them that they can’t live Independantly?

this could b easily be my son in a few years

and i Hear you, maybe because of this thread I took my other son for a treat today

living with a sibling who in his eyes ‘doesn’t fucking do anything ‘ id also hard on him -I can totally see that x

ZairWazAnOldLady · 05/07/2023 19:31

luckylavender · 05/07/2023 18:30

Well he doesn't work so that's why his income would be affected. You could read the post instead of being so condescending.

Disabled people who don’t work receive benefits just like you or I, those that can’t work receive more, and all eligible (which I would imagine they described man is) disabled people working or not receive benefits too. So my question rather than being condescending was why any of that would be impacted by his mother not being able to care for him.
I can both read and understand the situation this family is in, do you?

luckylavender · 05/07/2023 19:55

@ZairWazAnOldLady - yes thank you

fedupallthisrubbish · 05/07/2023 20:09

Oooooo sounds quite similar to my older brother! Also I have a son with ASD / pda so I do view my brother in a different way. I'm not so pissed off by his behaviour anymore - more like that's the way he is and I can't change him.

Covid has hit - people with ASD have really changed their view points as everything got comfortable. I think it hit the ASD community the hardest and increased anxiety million percent.

Now I actually think your mum quite likes this position - to feel needed - and also look after her "baby" which might be an old man but ultimately it's still her son / baby.

Your brother will never be interested in your family life - just accept it - it doesn't interest him. Your enjoyments on your life are very different to his enjoyments.

I think the house could even go to your brother in years to come (well that is what I expect will happen with my mums house)

He is very happy - he is living his own dream life. It might not be to your desire / standard but he is happy. By changing your lenses to how he views things maybe that will change.

Randomly what helped with my brother - was a collie dog! Which made my brother get out of bed walk for miles - it changed his outlook and probably got him out of depression ..... is your brother into dogs? That was truly a saving grace. Life changed as he LOVED the dog and it was cared like the KING.

Also, staying up for hrs could be adhd

Good luck - you have your own family now - concentrate on that 😍 you will only get angry at your mum and she's not wanting to change it.

And pretend your brother has no arms or no legs - he is actually disabled - he finds life incredibly hard - so you would push someone in a wheelchair if they didn't have legs - so there is a lot more things going on with your brother. Demand avoidant / can he actually tell whether he needs a drink / sensory issues with showers / teeth

If he's happy in his own world - that's great. He is unable to conform to a NT brother

Good luck not easy - hope I haven't said anything wrong - but my brother stressed me out for years and now I've just sectioned it off.

Enjoy your children

Thisisworsethananticpated · 05/07/2023 20:23

fedupallthisrubbish

fantastic post
Thanks 🙏

ZairWazAnOldLady · 05/07/2023 20:30

luckylavender · 05/07/2023 19:55

@ZairWazAnOldLady - yes thank you

Then why did you think his income would be dependent on his mother??? He may need help managing his money but it’s not going to suddenly drop unless we are expecting a miracle and him to no longer be disabled