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.

Your daughter is 16 and under your care. When adulthood comes along and the years pass I can sadly assure you she will find things increasingly more difficult. ASD often becomes more difficult the more the person ages. 10 years ago my ex could cope but I would put a very solid bet on that in another 10 years he will be looking at needing a serious support system in place.

You are completely misreading my own posts, I have said the op shouldn’t have to become his carer. That doesn’t mean he doesn’t need one. He will not be able to manage alone at this point and to force that as an option will be catastrophic for his welfare.

I agree with this.
@Beachbaby1234 it's likely that your mother will start pressuring you or manipulating you into taking on a caring role for your brother as she realizes that she is no longer up to it. It's very important to nip this in the bud, you can't let this man ruin your life, it's not your fault that he has been failed by his parents.

Well, who's going to provide that care, then?

The British state can't even hold the ceiling up in classrooms, provide enough maths teachers, or send ambulances to people within hours.

I don't think any govt body has the funds or motivation to provide household help to the OP's brother. Either he starts getting used to being more independent now, or he has a nasty shock 15 years from now, as his mother ages and can no longer do everything for him.

That was in answer to Gerrataere.

He is my youngest. My other 2 are adults, both with autism/ADHD. Who no longer live at home.

You're being insulting to many an autistic adults here tbh by writing all off just because of your own experience with 1 person.

This. He will become your problem when she dies but she won’t care because she won’t be around to deal with it all. She’s setting you up to fail.

This is no help to you OP, but thank you for your post. I have two children with ASD and one without, the majority of DDs younger life was her having to take a back seat attention wise, having to make compromises that never benefited her etc.

When she was 10ish she exploded one day about the unfairness of it all, how much she was hurting and how she felt so much less than her siblings. It never even occurred to me she might feel this way, things obviously drastically changed at home but it never should have taken 10 years for me to even realise this.

When you’re the parent of a child with ASD it can sometimes take over all your life to the detriment of other children. I hope this thread has helped other parents to ensure their non ASD child is getting all the attention and love they deserve too.

I think it would be a mistake to think because one autistic person can do something another can or to guess at how much work has been done to achieve this outcome. It’s not an even playing field.

It’s not just one person. And if being realistic is insulting then so be it. Deluding ourselves into thinking that ‘high functioning’ autism doesn’t come at a great cost to mental health rather than simply accepting that ASD is a lifelong disability that need continual support that ups over a lifetime is the height of denial. We are causing yet another generation of autistic people to crash and burnout due to a neurotypical society’s expectations.

I am not saying autistic people are not capable of self sufficiency, but that needs continued support and acceptance of their condition in full. It’s a disability for life and that means full support for life, whether it’s familial or social support systems.

Erm, you are also enabling your brother by moving closer to and helping your mum. So surely you can see how easy it is for your mum to have fallen into that trap?
She isn't going to change her outlook on this so you need to change your ways of dealing with it. Personally i would step right back. Telling her you won't take it on won't be enough, she will think you will carry on with the weekly shopping, cleaning etc when she is gone. Take her for lunch once a week, carry on asking her to go on holiday with you but that's it. No more running around for her and your brother.

OPs primary upset wasn’t her mums position or her brothers, it was that he wouldn’t interact with her children or her.

He may not even be able to understand why that would upset you. He’s just doing him. Do you even like him?

This thread is genuinely horrendous. And so much misunderstanding about the impacts autism can have.

There's saying I've heard from Chris Packham that when you've met one person with autism, you've met one person with autism.

Well done @gamerchick for getting your autistic child to help with chores.

However, just because it's something yours can do, that doesn't mean it's possible for all autistic people.

I have friends who have autistic children of the variety who like rules and compliance, and who like things to be tidy and have routine. Chris Packham, as quoted above, proudly shows off his beautifully minimalist house and carefully organised shirts in documentaries where he talks about his autism.

However, there are lots of others out there with autism who are like mini-wirlwinds who just cannot be be contained. For some of us, there are daily battles around using a toilet. Keeping clean/basic personal hygiene (changing when she's had an accident), taking medicine which is needed daily. Drinking, with minimum drinks targets set by medics so can't be ignored. Getting dressed is a battle. Any form of homework is horrific and we're grateful when she does even a fraction of what it set. It regularly takes 20 mins to get shoes on her as she's permanently distracted by other things and thoughts and just can't focus.

The battle, meltdowns and sobbing (on both our parts!!) involved in getting her to participate in tidying up the playroom are just horrendous. Trying to persuade her to even take ownership of one small thing (put these books on the shelf) is enough to spark major trauma. Even though she's the most likely candidate for the mess being there in the first place.

If she's interested, she might join in (I.e. baking is fun, so she is learning some cooking skills), but if it's something she doesn't want to do, she just can't bring herself to do it. She might have a go with the hoover or mop if it seems fun, but if its a regular chore and there's pressure to do it, there's no chance. I can only begin to imagine what it must be like trying to get a resistant teen or adult to do these things.

On the flip side, at 8 she's fascinated by all things science and knows things about physics and chemistry and astronomy that I learned at A-level. She's seriously bright and interested in the world around her and how it works. If anything I think her head is overwhelmingly full of these things so there's no capacity for basic life functions.

But that doesn't mean she'll ever manage to to get herself organised enough to manage living independently in house that not just in squalour. I hope she does, I really do, but when every little part of her day-to-day life, including things like medication to keep her well, needs coaxing, bribing, turning into games etc etc to get it done, I can genuinely see that if I don't want her living in absolute squalor, she may never be able to live independently.

Such a depressing thread. So little understanding of autism in so many posts and as a PP says, so much ableist language.

OP your brother is disabled. It is very unlikely he will take care of himself. It sounds like your mother is doing her best in very difficult circumstances. I can't believe she has an easy life with another child with serious MH difficulties. It is horribly sad that you don't feel you and your DC have had her attention and the guilt of this may weigh heavily on her too. I understand the toll having a sibling with ASD can take.

I would ask that you learn more about autism though and try to understand why he might behave in the way he does. For instance, it sounds very sensible for your brother to take himself away to his room if he is struggling when you come to the house. It is exactly what I would advise my DC with ASD to do. It also might help you to talk to your DC about ASD in a way that they can understand, and it might help you take things less personally.

When your mother dies you can choose whether to help your brother get support (from elsewhere )or not.. and he will need it.

When your mother dies you can choose whether to help your brother get support (from elsewhere )or not.. and he will need it.

I'm still waiting to hear where all the non-family help for brother is going to come from?

Government services in the UK are already stretched beyond belief, and an aging society will mean that the situation will be far more dire 15 or 20 years from now. There will probably be no help at all.

@user1477391263 I’m not sure why you think there will be no support. There are many disabled people supported by the state.

You're damned if you do, damned if you don't nowadays.
Such a ridiculous place to be.
ASD is not a one size fits all thing and you absolutely can be neurodivergent and also a dick.
Supporting your children to lead a full and healthy life is not oppression.
Why are we supposed to pretend that there is no difference between a person who cannot physically care for themselves, and someone who finds it hard to care for themselves?
My children are the latter and I would not be doing my job as a parent if I do not support them to live a full and healthy life, not opt out of the hard bits and let someone else serve them.

@Bentoforthehorde My children are the latter and I would not be doing my job as a parent if I do not support them to live a full and healthy life, not opt out of the hard bits and let someone else serve them.. Perhaps there are people who are more disabled than yours rather than they’ve been patented by people who can’t be arsed.

Hi @Beachbaby1234 I'd be really wary of taking too much from that thread in your situation. I'm the OP of that thread and the challenges it attempts to address are very, very, very specific to long term or life partnerships between couples. Those partnerships are very different to a parent/child/sibling type scenario.

My reading of your post is that your parents, particularly your mother have enabled your brother to opt out of life. The undercurrent may well be autism and your parents completely natural desire to care for their vulnerable child, now adult. The result however is a situation where your brother is massively reliant on your mother who will at some point will be unable to meet his needs.

I'd suggest a few things:

• talk to your Mum and outline your concerns.
• talk to your brother and outline your concerns (separately but clearly and gently) you may have to do this repeatedly over a number of months even years. Don't expect an immediate change.
• contact the National Autistic Society
• contact Social Services, at least to get some forward guidance

You also need to be very realistic and upfront about how much you are prepared to intervene, now and in the future. If as I assume to be the case you are not prepared to step into your mother's shoes (I wouldn't or couldn't) you need to lay the foundations now.

I speak from experience.

My mum had my autistic brother living with her until she died at 93. She refused to allow social services to help or consider what would happen upon her death and every time I tried to put something in place a social worker would visit, speak to mum and brother who would say 'no we don't want any help we are happy as we are' and it was case closed. I was flagging the situation with social services up to the day before she died and still nothing happened.

Sometimes you just have to let these hints take their course.

Did you even read what I said?
I literally said it is not a one size fits all but there is a difference between not being capable and finding it hard.
Christ almighty. And I never said people couldn't be arsed, in fact its the opposite in many situations like this one. The Mother has taken on the role as carer, which is bloody hard work.

@Bentoforthehorde I did it read as you felt you were facing up to it and this woman was opt ing out of the hard bits.

@orangeflags did the state help at that point?

Ah that full sentence was about the child.
Allowing the child (or man) to opt out of the hard bits.

Not about me facing up to anything. I in no way meant to compare myself to anyone.

Even if he goes into supported accommodation he will have a shock... they make you chores and promote independence. I went into one for a year after I became ill and needed care, we had an autistic individual who they considered able but reluctant.. he didn't get away with it at all. Plus as the careers are not related they can not be guilt tripped.

Sorry got side tracked, I was meaning to ask if this could be a consideration in the future? I'm surprised he doesn't have an adult social worker involved for a care package, they even do ones for a couple hours a week.