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.

Yes and people like the OP’s dbrother are also finding it notoriously difficult to fill all the forms etc…

Unless you’ve gone through PIP etc… yourself, I’m not sure you can get how hard the process is, even if you get it straight away abd don’t need to go to tribunal.

@QueensBees I have and if the man in question doesn’t receive UC, LCWRA and PIP he really sounds like he should. @Beachbaby1234 you could help them with the forms if it isn’t sorted out. Your poor Mum grieving for your Dad and coping with all this.

Hey,

I'm not sure I can offer a huge amount of advice, but just wanted to let you know, you are not alone.

I think being the only non autistic sibling can hard, because all the responsibility lies with you, regardless of what ever pressures(work/children etc..) lie with your own life.

I have a similar situation with my autistic brother and I too worry hugely about the future especially as my parents get older.

My brother lives in social housing paid for by HB, has had a few jobs, but none that have last more than 6 months, last job was 3yrs ago.

He also leads nocturnal lifestyle, has never shown any interested in my daughter etc../doesn't offer to help Mum & Dad with anything, even thought they are getting older & could really use some help.

He drives & has a car, but doesn't ever offer to take Mum to hospital appointments, meaning either myself or my DH have to take time off work to do this and while we don't mind, I have to admit its hard to swallow when we know he is sitting at home doing nothing.

My Mum like yours, has the notion of 'not wanting to bother my brother'

My brother is 32 and growing up my parents didn't handle his condition well growing up, back in the late 90's/early 2000's, they ignored the issue and hoped it would go away and didn't seek any professional help until he was 17, by which time it was too late.

I think in the future for the next generation, those with autistic teens, this will be less of an issue as autism is understood and diagnosed much earlier now and there are much more things in place in society for autistic adults, but if you are older like my brother & probably the OP's brother were not diagnosed until much later in life & didn't receive any support growing up, I think habits and rituals become much more deep rooted and any change that comes throughout life is harder to adapt to.

Honestly @ZairWazAnOldLady do you think her brother is going to be happy to go through all the PIP firms detailing how much he can’t do stuff with the OP seeing his relationship with her??
Do you think he will feel safe enough with her to detail all the ways he can’t do stuff, aka how he is ‘failing’ and is being dependent on his mum? It’s a heart sinking process at the best of times.
And do you think his mum is going to be happy with get stuck into it too, eg by writing a letter, when she refuses to discuss what will happen when she is gone?

Should he receive all that? PIP Wo a doubt. UC will depend on his mum income.
But has he ever done it or be willing to? Frankly, from the OP’s description, I have doubts.

UC won’t depend on his mums income. Why would it? They’re not a couple. If he’s not receiving the correct benefits that’s the place to start.

they kind of are a couple, as in they are a household, a self contained economic unit...kind of thing?

That is probably the case, and fine in the circumstances. But being given a house and paying the bills, feeding himself, cleaning, maintenance, making sure his benefits are paid still need to be done. If he doesn’t pay the bills he will eventually lose the house. He needs help before it gets to this.

@Pearlsaminga no not really. Once your children are adults they are entitled to the same benefits as you would be. You can share a house without being financial partners, like every flat share. Many people live at home for longer now they don’t do it as “children”.

I have name changed for this. I was the mother you are speaking about and can recognise exactly the situation. For those judging the poor mother, you just have no idea how bloody hard it is or what the situation is like. I have a son who became very depressed and just gradually fell apart. He is on the spectrum but after leaving school just couldn’t cope with adult life.
He lived at home, unemployed and suicidal , just barely functioning. I did everything for him because he was so disordered he couldn’t manage most things. I either did them for him or he would lie in bed , not wash his clothes or eat properly. There was no help out there.

He got a therapist himself after ten years of living like this , and gradually began to drag himself out of the mud. It took tremendous courage but he managed to get a part time job which has just moved to full time. He moved out into a shared flat.

The downside of this is having therapy made him decide I was the problem and ruined our relationship . He does not visit us and has cut himself off from the whole family. I am beside myself with worry as he had no friends or support network and his flatmates do not talk to each other at all. I suspect his mental health is deteriorating but I just don’t know what to do.
The strain and worry of all this has impacted my two other children hugely. I have only just begun to understand how much, particularly my daughter.

It isn’t your responsibility to care for your brother, but please try to have some compassion for your mother. The strain and worry for her will be unimaginable. She’s trying her best to cope with a terrifyingly difficult and lonely situation the best way she can. I have no one to turn to and no support. My other children are sick and tired of their brother whilst also very worried for him. They don’t want to hear about him. That leaves me very alone. I am awake in the middle of the night because I am so worried about him. Be there for your mother . Be kind to her. Try to do things with her outside the house if you can. I do not underestimate how hard this is for you, but it’s far far harder for her. The worry of what will happen to your brother when she is gone will be on her mind a lot. It’s her problem, but it’s a terrible situation. Have some compassion.

Thwre will be those who say it’s your mothers fault. Why doesn’t she just kick him out or force him to step up. It’s really not that simple with someone who is on the spectrum , perhaps also dyspraxic and deeply depressed. My son was actively suicidal also and in immense pain mentally. It was incredibly hard to live with and has ruined my life . I couldn’t go on holiday without worrying, I couldn’t enjoy anything. I was very depressed myself. The strain of caring for a grown man as if he were a child is terrible.

I attend a support group for carers and honestly this isn’t an uncommon story at all. It might help you if you can find such a group, as family members also attend the one I go to because they need help too.

On the question of your brother avoiding you, this is what my son would do when he wasn’t coping . If you are living a life where nothing is normal and you are barely hanging on, trying to engage with an adult sibling who has normal adult responsibilities, friends and a social life is incredibly hard. For one thing there are no areas of common interest, So conversation is difficult ,particularly for someone who is autistic in any case. My son would try and talk about the things that interested then both as teenagers, but of course his sibling was no longer at that stage and found it frustrating. This alienated my son further and made him feel even worse about himself. It is awful for that ‘child’ as they are already well aware that their sibling is angry and resentful of the burden they are placing on the family and parents. There can be an attitude of ‘just get a job/life/move out’ from other members of the family. In the face of that attitude, shame, guilt,low self esteem makes them withdraw further . It’s easier to shut yourself away than to try to engage and fail. When your mother says you make your brother anxious perhaps this is what she means.

All you can do is try to be kind to your brother and don’t judge him as you might do someone without his handicaps. Make allowances for him whilst trying to encourage him to do more things for himself. Gentle encouragement and kindness might help him feel more like interacting. In turn that will help your mum as she has all the burden of worrying about his wellbeing. Understand that your brother is unable to understand your needs or experiences. He is living a completely different sort of existence and may be very envious of your life and how easy things are for you by comparison. My own son is jealous of what his siblings have and longs to have even a part of what they have in their lives. He can’t see their difficulties and struggles because he hasn’t experienced them himself.

This is a very hard situation for you. I feel for you. Trying to understand your Mums struggles and those of your brother might help you relate to them better and help you see that this situation is not your responsibility but that you
can perhaps have a different perspective .

So you use avoidance as a mechanism to avoid things you don't like. How helpful!

She doesn't want to abandon her mother but she feels her mother has abandoned her. She feels that she and her children are afterthoughts. Lots of siblings with autistic families feel that way. I'm sure with your attitude your siblings do. Trying to get her mom to do planning for the future is paramount.

So you use avoidance as a mechanism to avoid things you don't like

Its normal ASD behaviour. What do you think Pathslogical Demand Avoidance is. Anxiety in ASD can be so huge it drives avoidance.

Yup avoidance of things we find overwhelming/ overstimulating. The things we avoid may seem trivial to others but to us it's like avoiding a dangerous/damaging situation.

I avoid pubs, loud music, crowds, discos etc. Now I know why I can't handle them I choose not.

ArseInTheCoOpWindow

I’m exploring this for my son (pda )

as the typical asd profile doesn’t help me or him understand why he avoids basically everything

its a shitty condition as whilst it clearly exists - it’s not well known and is very debilitating

you get fuck all support and carry a heavy dose of guilt , confusion , blame

praise be for the internet as it connects me with other parents and educates me

whats interesting is the number of asd siblings who don’t understand it either given some comments here

I kind of have to as im his only carer !

but my other child’s the same -and why should a teen have to wrap their head around it 🤷‍♀️

No good will come of going to that "support" thread.

Thank you. I found this very emotional and moving to read. I really appreciate you sharing your story and hope that you have been able to find some peace for your family.

I’m glad you found it helpful. X

I can completely empathise with you Beachbaby1234 and my heart goes out to you. My dad passed away last year and my 55 year old brother, whom I always thought to be on the autistic spectrum and who had always lived at home with dad, then had to function on his own. I tried to raise this issue with my dad for about 10 years before he passed but he would get very angry, shout at me and would not discuss how my brother would function when dad was gone saying he didn't want to talk about when he was dead. A year before dad died I broached the subject of getting a diagnosis for autism with my brother and I helped with the process by contacting his GP and getting the ball rolling. He received a positive assessment for autism. Whilst trying to care for my dad who had Alzheimer's and cancer but was still at home, I got my brother referred to social services via the autism organisation who had assessed him and due to his diagnoses his social worker and I have managed to find him supported accommodation with a housing association which he's been living in since May 2023. I live 130 miles distant from my brother but have helped him move into his new flat, got his furniture from IKEA which my partner then assembled for him, took him shopping for stuff for the flat, arranged support for him 3 hours a week, arranged all his utility bills etc, etc. I won't bang on about all I've done for him but it's loads, without me he would have drowned. I also arranged all my dad's care at home and later his funeral, I am currently in the process of selling dad's property (the proceeds of which will be split equally with my brother), I am caring for my mum whom I moved near me as she has suffered from Alzheimer's for the past 13 years (my brother never mentions her let alone visits her even though he has had ample opportunity over the years), I work full time, etc, etc. My brother did very little to help my dad when he was unwell apart from the absolute necessary, although my dad "protected him" all his life. Like your mum, my father was lonely and didn't really want my brother to leave the house as he was company for dad. As I said, my brother has absolutely nothing to do with my mum or her care and never has and she is now near end-of-life. My brother is high-functioning and works (and has done for the past 30 years) in a warehouse where he earns a lot more money than me. He's never offered me any petrol money even for the 250 mile round trip to his house! He goes to a local put where he knows people and socialises within his capabilities. I am glad that he is now settled and seems happy, but he has never once thanked me for everything I've done for him and our family, all the weekends and annual leave I had to use driving up to see and help my brother in meetings with social workers, the autism society, housing association etc. He has however criticised me, sometimes finding anything detail he can at, i.e. "You're going 25 mph in a 20 mph zone!", you asked me to do something but didn't say please!, etc. He rarely offers me anything to eat or drink in his new place (bearing in mind I've got up at 5am, driven 130 miles, helped him sort his life out and then driven home again) even though he hoards confectionary and has a cupboard full of treats! When we go to a cafe he never offers to buy me anything. He is entirely selfish when it comes to me. I feel that I have sorted him out as much as I can and once we have settled my dad's estate he can have his money and sort his own life out! There have been so many more situations over the years I've helped him with when the S**T has hit the fan with my brother, especially around money and his complete lack of competency in how to manage it (and complete lack of any motivation to want to manage it). I have tried to understand him, attended courses around autism, been so kind and considerate towards him but like you, I also have a life which has suffered terribly over the last 13 years and I've had enough of it. Beachbaby1234, I wonder if you have contacted your brother's GP and talked to him/her about your fears surrounding when your brother has to live an independent life? My brother's GP was so helpful, I don't know where we would be now if it wasn't for her referring him and then the autism organisation which were very supportive. If your brother does have a diagnosis on paper then it may be a good idea for you to contact social services and explain your concerns, although you may have to wait until your mum passes to do that as he will then be a vulnerable adult in need of accommodation and probably support. I wish you all the best and know that even though he is unpleasant to you and your family, it is just not as simple as just cutting him off - you are still his sister and you will both have joint responsibilities when your mum passes. My heart goes out to you and I really hope you are able to find some support x x

without me he would have drowned
Reading your post @SarahSeventy I want to say that I think you should have let him drown!
But it sounds like you have too much of a conscience to be able to do that, you deserve a metal 🥇and I hope you take the very best care of yourself from now on🙏💙

@OhcantthInkofaname I completely agree with you regarding Anotherparkingthread post; he sounds completely arrogant and fully aware of what he does. Life is full of situations with people who maybe we don't find particularly interesting, or we have to indulge young children, or colleagues at work etc. We aren't however rude and just walk away to another room and ignore them as it's blatantly rude and can be extremely hurtful. Anotherparkingthread may well be on the spectrum but clearly knows what he is doing and understands what "the right thing or the kind thing" to do would be, but clearly just can't be arsed and doesn't care if he hurts or upsets people. It's wrong to use PDA to your advantage/hide behind it!

@Frogpond absolutely! This is why I did everything for my brother; i was scared he would become homeless if left to his own devices. He would never have navigated the rental market, paying utility bills, buying furniture etc. I am disappointed that my brother often appears ungrateful and is sometimes unkind to me, but I can now relax a bit as he's getting settled and I don't have to keep seeing him or calling him. HaveYouHeardOfARoadAtlas states that the mother may leave everything to the son, however, this is easily contested in Court and I would doubt he would have the wherewithal or capacity to engage a solicitor and pay for them to represent him against his sister.

@tootallfortheshelf thank you for your comment, i appreciate it 😀

You’ve been amazing! I think it’s worth bearing in line though that someone who Jo lives as your brother does will not see your side of things as he hasn’t walked in your shoes. Have you tried asking hi for money towards your petrol, asking him to buy you lunch, reminding him gently that some thanks would be appreciated? In some ways , people in the autistic spectrum need to be taught these things .

Sorry about typos!