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.

@user1477391263 you seem to lack basic understanding of high functioning autism. In response to your rather obtuse post.

Coming out of your room to go to the toilet doesn’t impact visitors to the house. You know this surely? Most of us have experienced someone working from home while we have visitors, or can imagine it. If Db can’t interact with the children ask them to leave him alone.

Db receives his own benefits managed by his mother they won’t get less when he leaves and are likely to increase if he needs a carer. Assuming DF left them the house they should be able to manage.

Of course not everyone has money for a cleaner but if DM can’t manage to clean and DB can’t then presumably that’s the cheapest easiest way to support her in old age? That would be the case with or without DB

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.

if my elderly widowed mother was caring 24/7 for my disabled sibling alone I would help her not criticise her.

@ZairWazAnOldLady id agree with you if he had NEVER been able to do more than he does now.
But that’s not tte case. So there is a question as to why this is the case now.

You need to talk to your mum and say that you need to take steps to involve adult social care and to plan for the future

If you think she will refuse, then I would approach adult social care and explain the situation. You can very much ask for their discretion.

This is because there will need to be a plan, and support put in place for your brother and it will need to start soon so that it can progress incredibly slowly. Your brother needs more than one trusted person in his life

I have an autistic child. I also have had other very mentally ill family members that I needed to involve social services with even when other family members resisted because they were so caught up with trying to protect the current situation.

I bet there's a tiny voice at the back of your head saying "maybe this hasn't been the best choice for anyone" and you feel guilty for criticising a scenario that is so full of sacrifice and love. But maybe your brother had been failed by your very well meaning parents too. He hasn't been supported to find a fuller life.

@QueensBees it really isn’t the case that because you could do one thing you can definitely do another.

I wonder if the tiny voice saying "maybe this hasn't been the best choice for anyone" and you feel guilty for criticising a scenario that is so full of sacrifice and love. has ever wondered if actually they’ve done a fantastic job supporting a person who is infinitely more disabled than it appears from the outside? It’s possible that the parents were a bit shit and the guy didn’t get to where he should but the opposite is also possible. For some autistic people his life would be a triumph.

Sounds like failure to launch. Google it if you are not sure what it is. It needs gradually sorting so your mum can have her own life rather than mother him for the rest of hers. Good luck.

Me too. Mine is 17 and won’t go to school. Wants to be in her room all the time. She won’t prepare meals as it’s too overwhelming for her. She will hide when people come round as it’s too overwhelming. She gets Pip because of these.

l feel for Op, but also for the mum and brother. ASD is very misunderstood. Demand avoidance is very much a thing. I don’t mean PDA. I mean they get overwhelmed by very tiny demands.

My dd has regressed dramatically in 5 years. It can get worse.

Thank you for all the replies. I find it so helpful to hear different perspectives on this issue and to know we aren’t alone. I particularly appreciate those parents of ASD children who have shared their struggles and worries. Lots of the things mentioned resonate with me. My brother also doesn’t wash or brush his teeth without lots of prompting, won’t make a piece of toast and can become very aggressive when pushed to do things. However, he used to do all these things independently when younger so yes, it’s devastating to see the level of regression. It’s an incredibly difficult situation.

I love my mum and we can have a nice relationship when it’s away from the house. She’s really the only family member I have left so it’s hard for me to think about walking away, although I won’t hesitate if needed for my own mental health and my kids. My partner and I really worry about her and have offered to take over for her to have a holiday, trip to see her sisters or just time off to do whatever she wants. This has happened a few times, but she hates leaving my brother so often it doesn’t. We also visit multiple times a week to help cleaning, gardening, shopping and general housework (unfortunately no spare money right now for a cleaner as I’m on maternity leave). These are the times where my brother will retreat upstairs. I used to pick my brother up and drive him to therapy sessions when they were still going on but he’s since stopped going. I really strive to not criticise her parenting of me and my siblings, partly because I know how upsetting that would be for me. However, I am sure she does feel criticised by me regardless because of our differing views on what needs to happen for my brother. I guess I am actually less angry at my brother for his avoiding everything (which I can see serves a function, however upsetting) and more at my mother for her continued avoidance of this situation and denial of my feelings about it all. I feel like she desperately wants to recruit me to her narrative about my brother- that’s he’s helpless and a victim of a terribly unfair system. Whereas this might be true, I think this is unhelpful and I want to use the time we have to get the best solution possible which will inevitably mean some change and discomfort for him. Don’t get me wrong, I don’t have any relationship with my brother now and frankly don’t like him much, but I don’t want him to suffer.

In response to people’s queries about me questioning my brother’s finances, this is because although the house is thankfully paid off, he wouldn’t currently be able to finance it, or manage the maintenance of it, on his own. I’m really worried that if my mum leaves the house to him, it would quickly become uninhabitable because he wouldn’t know how to pay the bills or even buy food to sustain himself and then I would have to step in anyway. There is currently no will, as my mother gets upset whenever I talk to her about it. She won’t consider selling up and buying him a supported flat of his own because the thought of him struggling upsets her so much. She doesn’t believe he can function without her doing everything. I have wondered whether my mother might also be ASD but this isn’t something I think I could ever raise with her.

Unfortunately social services aren’t able to help because he isn’t considered ‘severe’ enough and he isn’t homeless as my mum is happy to care for him. I suspect this will change when my mother isn’t able to manage this anymore.

Would you talk about a visually impaired person like this? Or a deaf person?

ASD is so misunderstood.

Oh you two, play nicely. Its not helpful to the OP to be trading insults.

I would say, that the OP I would drop the rope if I knew how to. These family situations are incredibly difficult. I am not my son´s worst enemy "through love". I would walk away if I could, trust me.

I think they need to hear all this from someone other than you.

Are there any charities or anything like that that can discuss what happens after your mum dies? They need to speak to someone as the current plan is crap.

As for you, you just have to detach I guess. It looks like you can’t have the relationship you want with either of them, and I’m sorry for that. Must be really tough.

I feel sorry for your poor mother.

Clearly you harbour a lot of resentment for the way your childhood played out, and the burdens your mother faces in her old age. But… this is exactly what all parents of disabled children face. And your brother is disabled. It doesn’t matter how academically able he was (as many autistic people are) or how well he managed within the very structured confines of school life. The kind of boy he was at school was in no way an indicator of how he was going to manage in adulthood.

What you’ve described is a very common issue when it comes to autistic adults trying to navigate adulthood. And as a mum of autistic kids it scares me, because I could very well see my own son living this kind of life as an adult.

Your mum says you don’t understand how autism impacts your brother. I think this is true.

👏🏼👏🏼👏🏼👏🏼

@ArseInTheCoOpWindow Well said!

I meant @Jellycats4life !!

But OP’s mum needs to plan and arrange for her son to live independently.

having a silent expectation that OP will take over from her is unfair to both OP & her brother.

and it doesn’t matter if a house if fully paid, he’ll lose it if he can’t pay basic bills and function on a basic level eg washing, feeding himself etc.

he would be better settled in assisted living housing with as much help as possible.

OP you need to speak to your mother frankly maybe sit down with your partner present and spell out that you will not take over from her as your brothers skivvy. She needs to make arrangements now to ensure he is well settled and safe in the eventuality she is no longer able to continue as his career.

Autistic and ADHD her. Married to an autistic man.
The line between 'don't want to' and "can't' is very fine. Finding a workaround/coping mechanism isn't, as PP suggested 'curing' his autism. It's about understanding his triggers.
He may never be able to live independently. He may not. We don't know. We are strangers on the internet.

As harsh as it sounds you have done enough. Your mother is an adult. If she chooses to make her own bed she must lie in it.

Be clear that your brother will be dealt with by social services when she passes. You will have nothing to do with it. Help her as you want for now, but I wouldn't blame you for stepping away.

Your mother did the best she could during your childhood. She shouldn't be blamed. Parenting a disabled kid can be hard. That doesn't mean you had a traume free childhood. Disability impacts the siblings quite a bit, especially as they always get ignored and have to put up with hurtful behaviour from the disabled sibling. The latter cannot help it, but it still hurts! Like how you are being ignored.

You have children and a husband now. You owe them a mentally stable, happy wife and mother. It's perfectly fine to prioritise yourself for once and leave them to themselves if it becomes too much.

Also OP with 2 autistic siblings don't discount the possibility that your mother might also be autistic explaining some.of her behaviour. There's a strong genetic link.

From a special needs parents to another. I often have to bite my hand off to make sure that I am not babying my children and enable them with skills for them to live as independently as possible. I remember the shock from my neighbours when they saw my 12 year old DS going to school by himself. It was hard but I had to do it. Parents of children with special needs have become so accustomed to fighting for support, making sure our children get what they need etc. that we need to keep reminding ourselves that we need to slowly let go.

I think because your brother is "high functioning" (put these in quotation marks just in case I receive messages from Autistic adults saying that we don't use that term anymore) and very capable, thus probably has masked sons of his real difficulties growing up and he probably didn't really get the help that he needed, as he is very "high functioning". It probably was easier for your mum to support him as he appeared, then, to have relatively minor needs. What should had happened is that your brother could have gone on to semi independent living, gage a personalised carer who would support him with his independent skills and so forth. Now he is 40 and really can't be forced and adults services for disabled adults are so stretched. But this wouldn't stop me. I would look for semi independent living housing options and encourage your mum to get your son a carer in the hope that the carer teaches your brother independent skills.

I wouldn't cut your mother off. She has just become so accustomed to putting her own needs and family needs aside for the sake of your brother. But she has to realise that this cannot go on and it's unfair to her and for the rest of the family. She needs to think about what will happen when she passes away. I would be tempted for her to liaise with parents who have disabled adult DC's and have gotten support for them. If you private message me, I will pass you on the details of a special needs parents forum.

Precisely. You have no idea. Your comment was disgusting.

I apologise for not reading through the whole thread but I do think you’re unreasonable. Firstly there’s no such thing as ‘high functioning autism’, autistic people struggle in different ways but equally as much even if they seem ‘more capable’. The only difference in ASD is needs level - from needing help some help day to day to full personal and daily living needs. Evidently your brother has high needs, he still needs full care at his age. He’s not refusing to engage, he simply cannot. Autistic traits can get worse and more difficult to ‘mask’ as a person gets older, so you will inevitably see his needs become higher as time goes on.

As for practical advice. Firstly your brother should be claiming PiP/UC/Limited Capacity to Work and contributing to the household. It sounds very much like adult social care should be involved, a support worker as well. This starts a longterm process not only for immediate support and take some pressure off your mum, but in the future it will be social care’s responsibility to your brother when he’s inevitably on his own.

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.

OK, so.

You don’t want to lose your relationship with your mum. That means you need to drop the rope on the idea of getting her to change how she deals with him, and stop pushing the idea of his independence.

You are also clear that you won’t take on this role when she’s gone, and that he’ll need to live in a smaller property, perhaps with social services support.

Your mum hasn’t made a will. This means when she dies, her assets will pass jointly to her children. If you also have another brother who can’t live independently (and is funded to live elsewhere?) this could be a big issue if an inheritance affects his options. Could you talk to your mum about her will and about setting up power of attorney on this basis - that in order to be able to best help your brothers once she’s not able/not here then you’ll need to be able to make financial decisions in the best interests of your brothers, who lack capacity. A trust? These are all things that should be discussed.

You don’t have to say - Mum, I will make my brother move and I will not look after him the way you expect. But you can say, Mum, in order for me to be able to look after my brother(s), I’ll need to be able to make decisions. Shall we talk to some professionals about what could be best?