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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:
greysockmissing · 05/07/2023 11:54

I think you need to stop calling him high functioning as from what you've said he is barely functioning. It's irrelevant what he used to do if he isn't able to do it now.
I would make it clear to your mum you won't be taking on any caring responsibilities and she needs to have a plan to either build his skills and independence or get carers in to take over some of the care she gives. Make sure you brother knows this too. Not in a threatening or doom laden way - just matter of fact.
Then step back if it isn't something you want to be involved with. It's not really your business and doesn't need to be.

Thisisworsethananticpated · 05/07/2023 12:19

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

seriously ?? That’s fuxking horrible

Bit sadly I agree that the oft misused ‘high functioning ‘ term doesn’t apply
never does

op im Sorry your thread has become derailed
I hope reading the views of other SEN mums helps a bit
I totally feel compassion for everyone here and you too x

LadyJ2023 · 05/07/2023 12:20

I'm autistic and find it hard reading some of what you say if you lived with autism maybe yoy would understand better. We do tend to zone out of things, we don't tend to notice birthdays,babies etc etc so I feel your also being unreasonable

ContractQuestion · 05/07/2023 12:23

Yes the language used about a disabled person here is horrible "He can rot... alone" 😔.

It sounds like your mum needs more support with him though.

It sounds hard for everyone.

ZairWazAnOldLady · 05/07/2023 12:23

High functioning means he doesn’t have learning disability, not he’s able to look after himself. It’s exactly this presentation that this sort of misunderstanding really impacts.

Actually I think helping her find support for writing her all is a good idea. She may of course already have one. Your mums in her 60s so can expect to live another 20 odd years. Why on Earth would she want her son unhappy in sheltered accommodation when he is struggling so?

Pearlsaminga · 05/07/2023 12:24

@Beachbaby1234
I'm so sorry this is a horrible situation and you have been very very badly let down by your parents, none of it is your fault.
I'm not saying this to defend your mother's mishandling of the situation but it sounds like she is very locked into this dysfunctional dynamic and will never be able to admit how harmful and wrong it is.
I don't know what the solution is but please please find a way to prioritize your own well-being, you are very important!

Ameanstreakamilewide · 05/07/2023 12:24

Gerrataere · 05/07/2023 11:19

Just read SS won’t get involved. You don’t just roll over and accept that. You have to fight for it, if you don’t now then his care will come down to you later on. The only way to get help is by throwing every single toy out of the pram, it’s shit but the way it is. Write every letter, call them, tell them it’s a safeguarding issue for both your mum and brother. They are leaving an aging woman and her disabled son in an increasingly dire position and you will hold them personally responsible if there are any negative consequences to this.

That's why you should read the whole thread. 🙄

Jellycats4life · 05/07/2023 12:25

I think you need to stop calling him high functioning as from what you've said he is barely functioning.

Exactly.

Besides, the true definition of “high functioning autism” is having an IQ above 70. So it doesn’t account for very much.

Most people understand “high functioning autism” to be “barely noticeable autism” which, again, doesn’t seem to apply to the OP’s brother and his very significant difficulties.

I get the impression that OP considers her brother to be lazy, mollycoddled, manipulative and making a choice to live quite a sad, limited life - which I’m sure is quite far from the truth.

Yes, in an ideal world some difficult conversations need to be had, and future plans need to be made. But you do realise, OP, that this is your mum and brother’s very worst nightmares? My children are still children and I lie awake at night with my stomach in knots wondering how they’ll manage when I’m no longer here to support them. You are asking them both to think the unthinkable and that is very painful and frightening.

Gerrataere · 05/07/2023 12:27

Ameanstreakamilewide · 05/07/2023 12:24

That's why you should read the whole thread. 🙄

Goodness me, sorry mum. My points from my first post are still valid, it’s not an unfair assumption that the family hadn’t got social care involved. Especially since she considers her brother ‘high functioning’, it suggests she thinks on some level he can simply get on with things if forced to.

ZairWazAnOldLady · 05/07/2023 12:29

Her brother demonstrably IS high functioning he is also severely disabled by his autism and possibly depressed.

Ameanstreakamilewide · 05/07/2023 12:31

On the Elderly Parents board, there's a common phrase that crops up again and again.

I'm paraphrasing, but it's basically that when you see a crisis looming, which you have raised repeatedly, and no one is listening to you...then you have to stand back and let it happen.
And let the chips fall where they may.

Gerrataere · 05/07/2023 12:32

Most people understand “high functioning autism” to be “barely noticeable autism” which, again, doesn’t seem to apply to the OP’s brother and his very significant difficulties.

What people wrongly refer to as ‘high functioning’ just means that the autistic person is masking to an ‘acceptable social standard’. It leads to a lot of burnout and mental health issues for the said autistic person because ASD is still wrongly thought of as a straight line from ‘very obviously incapable of self care’ to ‘oh I didn’t even realise you were autistic’. That’s not how it is at all.

Superdupes · 05/07/2023 12:33

Is you brother claiming disability allowance or PIP or whatever it is OP? That really needs to be done but unfortunately I doubt he'd be able to do it alone and your mum may not have any idea how to go about it. Having that could help with the financial aspect if it's not being claimed already.

It sounds like he is living with very bad anxiety - really not uncommon with ASD and social phobia (quite possibly even agoraphobia) - again not uncommon. Unfortunately your expectations of some one who is really struggling with being autistic and their MH are completely unrealistic. His self esteem is probably through the floor and his anxiety through the roof. Your birthday is not going to be what's on his mind I'm afraid.

PowerTulle · 05/07/2023 12:43

I think your mum is in a very difficult situation here. She has tried to keep her vulnerable adult child (your brother) safe and care for his needs as best she can. You’d probably do the same for your children OP if they were distressed or struggling.

However by shielding him from the world he’s lost some of his ability to care for himself. It’s a very hard balance. I say this as a parent of a SEN child.

Its not your responsibility to manage this situation and you can’t anyway. Try accepting that relationships of any kind may be difficult for your brother and it’s not personal or meant to hurt you. It is what it is, so perhaps step back for now.

PowerTulle · 05/07/2023 12:43

Adult son rather

user1477391263 · 05/07/2023 12:46

There is nothing in the OP to suggest that DB isn’t autistic. Are you of the opinion that he can just try harder and somehow miraculously get over his disability? That’s really not how it works.

No, nobody is suggesting autism can be magically cured, but people who are on the spectrum can often improve their ability to perform various tasks, just like people who are not on the spectrum. The OP clearly describes someone who used to be a lot more capable but whose ability to do things seems to have atrophied as he has got used to relying on his mother for absolutely everything...

ZairWazAnOldLady · 05/07/2023 12:54

@user1477391263 yeah that’s extremely common for people with autism. That’s why so many burn out and seek diagnosis as adults who just muddled along before. Honestly it’s highly highly unlikely that he can just try a bit harder so OP can have more of her mothers attention. I do feel sorry for OP but her parents must have gone to Herculean lengths to shield her from the impact of her brothers disability if she really believes that they could have managed things so well his disability didn’t impact her at all.

Brefugee · 05/07/2023 12:59

LadyJ2023 · 05/07/2023 12:20

I'm autistic and find it hard reading some of what you say if you lived with autism maybe yoy would understand better. We do tend to zone out of things, we don't tend to notice birthdays,babies etc etc so I feel your also being unreasonable

Agree that some very harsh things are being said, and probably not good to read unless you are a carer with experience.

However. Harsh things sometimes need to be said. An autistic person can zone out as much as they like as long as there is someone to carry them. In this case it is OPs mum. She is already elderly and she is not helping anyone, least of all the son she lives with, if she doesn't face up to the reality of what may happen when she can no longer car for her son.

For eg: what if your mum, OP, needs to go into a care home for herself. Has she thought about a) how that would be funded and b) what would happen to your brother (and that is completely ignoring the other brother)

I think pp's advice about the POA and setting you up as a joint decision maker (insofar as you are prepared to do this?) so that your mum, with your help, can do some future planning. It is not going to be achieved over a day or a weekend, so you need to be clear in your mind, then make it clear to her, what needs to be in place for you to plan for your brother's future.

I'm not entirely sure that if you don't get SS on board now that they will not get on board later if your mum is somehow incapacitated or unable to care for your brother that an adult sibling is obliged to step in. Or is that the case? because if it is, OP, you need to get clear now on expectations.

ZairWazAnOldLady · 05/07/2023 13:05

i really think you’re kidding yourself if you think she hasn’t thought about what happens if she dies. I’ve literally never met a parent of a child with any level of impairment who hasn’t been haunted by that from the beginning.

gamerchick · 05/07/2023 13:15

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.

Because there will come a time when mother won't be around anymore and the OP shouldnt have to pander to a 40 yr old man by taking over.

The mother needs to teach him to be self sufficient. There's a dark road ahead if she doesn't.

It needs hammered home that the OP will not take over.

easilydistracted1 · 05/07/2023 13:22

In a way you don't have a problem and should do nothing. Sorry if that sounds harsh.

You haven't been around much and your brother and mother are used to that. Many autistic people don't like change. So your brother is just carrying on as things were before which includes not spending time with you and your children.

Your brother and mother won't change or at best will change very little as they don't want to.

So you have the choice to go and visit and be ignored or choose not to visit and seen your Mum elsewhere.

Your brother will probably end up inheriting the house or if it's a shared inheritance it will be massively difficult to get him to move. So probably worth making peace with any designs you have on inheritance now.

Noone seems to be suggesting you become your brothers carer and he won't really be in the same room as you. So I would simply ask your mother what the plan is for him for the future. You may find he comes into his own when he has to be independent or he may not.

I'm not sure why this is an issue how given your mum is still quite young, perhaps the caring is taking its toll. Maybe look at carers support if she wants it.

My brother is similar to yours although has some more independent skills and is financially able to fund his interests and doesn't have a diagnosis. The best advice I can give is to make peace and be glad for all the skills you have. I now see the other side as my wife is autistic and is pretty independent but when with her lovely mum she regresses as that's their dynamic and her mum does everything for everyone. High functioning labels are nonsense. If you caught my wife on a very bad day where she is highly anxious and becomes non verbal (and used to being rescued) its possible to mistake her for having a learning disability. But she has a professional job and a 2.1 degree.

I wouldn't recommend the married to someone with asd thread as a lot of posters (including me) post when things are difficult rather than feeling joy so you might just feel depressed! And it's not in your control in the same way as with a partner

Gerrataere · 05/07/2023 13:25

gamerchick · 05/07/2023 13:15

Because there will come a time when mother won't be around anymore and the OP shouldnt have to pander to a 40 yr old man by taking over.

The mother needs to teach him to be self sufficient. There's a dark road ahead if she doesn't.

It needs hammered home that the OP will not take over.

I’ve been back on MN after a long break only a few weeks. I don’t know what’s happened in that break but this place has become horrifically ableist from the threads/attitudes I’ve seen. No the op shouldn’t take over but you cannot hammer in skills to someone with autism. No to the degree of full self sufficiency at this point. What you’re advising is dangerous and encouraging longterm neglect.

user1477391263 · 05/07/2023 13:32

Is it? We don't even know what the man is capable of. It doesn't even sound like anyone has really tried?

user1477391263 · 05/07/2023 13:33

Mum is not immortal and he will eventually have to cope without her care anyway. What is your solution to this? Are you offering to go and do his housework while he shops for his special hobby?

gamerchick · 05/07/2023 13:34

Gerrataere · 05/07/2023 13:25

I’ve been back on MN after a long break only a few weeks. I don’t know what’s happened in that break but this place has become horrifically ableist from the threads/attitudes I’ve seen. No the op shouldn’t take over but you cannot hammer in skills to someone with autism. No to the degree of full self sufficiency at this point. What you’re advising is dangerous and encouraging longterm neglect.

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