Autistic brother makes it impossible for me

[IAmHereButNotHere]

As title says really.

He’s in a routine and will not break his routine, ever. So he lives with my mum, visits my dad Tuesdays, Thursday and Saturday.

He cannot cope with me being there too, I get in the way, not deliberately but I just talk when he wants quiet so we can’t be there at the same time. And he cannot cope at all with my 7 year old, who I’m a single parent to – just her being there upsets him. He says he likes her but can’t cope with being around her.

He can’t cope if mum goes out outside of his routine, so if she goes out at 10am instead of noon he can’t cope so I can’t go on daytrips with my mum as she also has to be back at a certain time. If she;s not there when he gets back from dads, he gets upset. If she’s there when she’s not supposed to it upsets her.

Mum got a new car the other day and he couldn’t cope with that either, keeps saying it’s not mums car.

I try to understand but it affects my life too. I can’t see my parents when I want to, I can’t ask them to care for my DD unexpectedly, I can’t just pop in when I’m walking passed, my mum can’t just get my DD from school or holiday club as a one off, everything to do with my parents and brother has to be organised down to a tee – my brother cannot cope with my DD being even in his house touching anything so any childcare is at my house and I can’t be a minute late because it upsets my brother.

Because of covid I haven’t seen my dad for over a year. Brother used to only go twice a week but he’s increased it to 3 times. I get weekends off but my dad has a hobby on Sundays with some friends of his who still work so I can’t see him then, I also get Tuesday off but can’t go then due to my brother. If I suggest he doesn’t go one week so I can I get told by my brother that upsetting his routine will upset his rhythm and he may never be the same again, my parents suggest it and get told that they need to consider him over me because of his autism – I sort of agree with that tbh he lives with my mum so should come before me and his AN mean he needs my dad more than me.

I am just moaning here. My whole life revolves around my brother. I love him but I am sick of having to consider him when I want to see either of my parents. I can’t go on holiday with either parent as it upsets my brother so much.

I am lucky I have supportive friends and good childcare options nearby, but I am mourning the relationship I thought I’d have with my parents. My DD barely recognises them.

I know I am VUR and prepared to be told so. Sorry for the rant and sorry if any of my wording is wrong or offensive, I don't mean to be.

I think promoting independent living is going to come when families join together to have strength in numbers. Taking part in National Autistic Society campaigns is the answer.

I feel that it seems like more emphasis was placed on promoting independent living a decade ago. I suspect that funding cuts have meant that the emphasis has come off this aspiration, as far as various authorities are concerned. This is wrong.

@Butchyrestingface

I get weekends off but my dad has a hobby on Sundays with some friends of his who still work so I can’t see him then

Can't your father occasionally prioritise his own daughter over his golfing buddies?

Do you know any golfers? (if it is indeed golf) And everyone should be entitled to some time for doing their hobby and seeing friends too.

Thing people are missing is that he can change his routine.

When he decided he wanted to go to dads 3 times instead of 2 he changed everyone's routine including his quite happily.

So he can develop new routines. What he needs to work on is understanding it cannot be at the detriment to what everyone else needs or wants.

@kidsatuniemptynester

Your brother can manage change; he changed from 2 days to 3 days at your Father's house. I know it is easy for me to say, but there is more than one person in the family, and your brother needs to learn that he cannot, always, have everything exactly as he wants it. Tip toeing around him, pandering to what he thinks he needs has made life very difficult, and will make the necessary changes to his future life even more difficult. There will come a time, in 20 or so years, when your parents will not be able to cope with him, so you all need to start, as a family, to ease the parental burden and at the same time, allow you and your DD to have a bit of time with your parents too. If he can;t bear to have your DD in the house, tell him to go to his room. Being autistic does not give him carte blanche for full on selfish and entitled behaviour, he is part of family.

He can't cope with her in the house at all, if she touches something or even speaks even if he's in his room he literally melts down. I'm not going to force my DD on him as he clearly can't cope but I do need to do something.

Thank you everyone else for the suggestions, you're right that he can cope with change with enough warning, he decided himself and told everyone during lockdown 3 he was going from 2 days to 3 with dad, so I might suggest doing the same in reverse to him.

I think my mum in particular thinks it'll all be alright without really thinking of the future. Her own parents are still alive and in their 90s so I think she thinks she'll still be around but I can't imagine my grandparents coping with a man in his 50s in the same way my mum does now. That's not to say I don't sympathise, it must be so hard, and in a way I'm an outsider as I no longer live with either of my parents.

I think I will approach my dad first, if I can calve out time with him things may feel easier and I can tackle the other issues with my mum. I think it is going to have to be a slow change.

@Boredmotherofone

My child has mild autism (although you're apparently not supposed to call it that anymore.... Though she's very, very different to those with severe autism like your Dbro) and it's really difficult to know where to draw the line and say "Look you're being a bit silly now" especially as there are some deluded people out there who believe that a person having autism means they can get whatever they want, whenever they want it, always get their own way etc - coz Autism. Well, call me mean but I wholeheartedly disagree! I'll preface this by saying that whilst it may not sound like it, I am extremely lenient with my DD and have moulded my entire life around her and making her happy & comfortable - as I should, as her (only) parent! However some of her demands are entirely unrealistic and often simply impossible to achieve! I have to say no multiple times per day, like any other parent and whilst I'm sympathetic as to why she wants something a certain way and always try to find a workable solution, I HAVE to tell her to find a way to deal some things sometimes.

Do you parents never try to explain to him that these demands are simply not workable sometimes? If yes, how does he react?

I agree. I'm autistic myself and have 2 autistic children, one now an adult. You have to find a balance doing what you can to support and make their lives easier and not allowing their autism to control everyone's lives. We have to find ways to cope with life and that won't happen if we never have to step outside of our comfort zones.

@welcome2021 You need to get your Mum out of there 😳 Adult social services, police, women's aid - whatever it takes. This is serious

@Eggfriedpower

I wonder if people talking about people with physical disabilities in this way would be allowed? Calling a relative fucking annoying because they can't walk?

But this isn't about what the disabled relative can't do, it's about what he prevents the OP from doing ie seeing her parents when she wants to and her daughter having a relationship with her grandparents.

I absolutely do not begrudge my dad his hobby, he's worked hard all his life and it's 1 day out of 7, he should see friends and enjoy something other than his DC and DGC. It's not golf as suggested here but another similar hobby that requires commitment, he could in theory drop down to once a month or once a fortnight but why should he?

My DDs after school activity is a hobby and I make sure she goes unless ill, to me it's the same thing, it's something away from "life" to kick back relax and have something else to enjoy.

@IAmHereButNotHere

I absolutely do not begrudge my dad his hobby, he's worked hard all his life and it's 1 day out of 7, he should see friends and enjoy something other than his DC and DGC. It's not golf as suggested here but another similar hobby that requires commitment, he could in theory drop down to once a month or once a fortnight but why should he?

My DDs after school activity is a hobby and I make sure she goes unless ill, to me it's the same thing, it's something away from "life" to kick back relax and have something else to enjoy.

I think approaching him in the spirit of giving your mum a break would be a good tactic here. You can definitely make things a bit easier, if you all commit to putting the ground work in, and having the patience to take it slow.

He can't cope with her in the house at all, if she touches something or even speaks even if he's in his room he literally melts down. I'm not going to force my DD on him as he clearly can't cope but I do need to do something.

For me, this is the area to be dealing with asap as this must be horrendous for your dd to deal with, not to mention what it could be teaching her about family relationships. I know I internalized all kinds of shit from dealing with my psycho of a sibling (not that I'm calling yours or others that btw, that's just my experience) and I wouldn't let him anywhere near my kids now. I don't want that trauma for them.

I think my mum in particular thinks it'll all be alright without really thinking of the future. Her own parents are still alive and in their 90s so I think she thinks she'll still be around but I can't imagine my grandparents coping with a man in his 50s in the same way my mum does now. That's not to say I don't sympathise, it must be so hard, and in a way I'm an outsider as I no longer live with either of my parents.

With my mum, there was always an expectation that I'd 'step up' and get involved when she died. Therapy helped me make clear that there's not a hope in hell I'll do anything of the sort, which caused her a lot of distress. I wonder if your mum may be feeling that you'll step in and help him manage when she's gone? You might be happy to, I don't know...but I know for mine, thinking that helped her keep her head buried in the sand as to how bad everything was.

@SionnachRua

He can't cope with her in the house at all, if she touches something or even speaks even if he's in his room he literally melts down. I'm not going to force my DD on him as he clearly can't cope but I do need to do something.

For me, this is the area to be dealing with asap as this must be horrendous for your dd to deal with, not to mention what it could be teaching her about family relationships. I know I internalized all kinds of shit from dealing with my psycho of a sibling (not that I'm calling yours or others that btw, that's just my experience) and I wouldn't let him anywhere near my kids now. I don't want that trauma for them.

I think my mum in particular thinks it'll all be alright without really thinking of the future. Her own parents are still alive and in their 90s so I think she thinks she'll still be around but I can't imagine my grandparents coping with a man in his 50s in the same way my mum does now. That's not to say I don't sympathise, it must be so hard, and in a way I'm an outsider as I no longer live with either of my parents.

With my mum, there was always an expectation that I'd 'step up' and get involved when she died. Therapy helped me make clear that there's not a hope in hell I'll do anything of the sort, which caused her a lot of distress. I wonder if your mum may be feeling that you'll step in and help him manage when she's gone? You might be happy to, I don't know...but I know for mine, thinking that helped her keep her head buried in the sand as to how bad everything was.

I don't mind helping a bit, but i might have my own young children or even grandchildren and I absolutely want to be a part of my DDs life as well, I'm happy to do bits of shopping and I will help him get set up, and I'm always at the end of the phone for him, but I don't want to do what my mum does now.

I don't mind helping a bit, but i might have my own young children or even grandchildren and I absolutely want to be a part of my DDs life as well, I'm happy to do bits of shopping and I will help him get set up, and I'm always at the end of the phone for him, but I don't want to do what my mum does now.

Which is totally fair! You're not the parent, and this was one of the hardest things for me to 'unlearn' in therapy - being expected to step into a parenting role and take on things that weren't mine to deal with. It might just be something to tease out with your mum in future.

@SionnachRua this was a lesson I only learnt in the last year or so. I've spent 30 years having it drummed into me that I was expected to take over as mother of my brother when my mum dies. No matter how much I explained that I have my own life and family it was ignored and I was told I'd be expected to look after him when she dies.

OP. The issue here is with your parents.

The biggest issue for carers is that they're not recognised as victims of abuse or recognised a humans with human needs.

If a husband demanded a wife only went out 10-3, verbally abused them when they went early or returned late, used physical violence towards them because they were angry etc it would be so,enticed violence.

When a carer suffers the same treatment - it's because they are a carer.

This attitude has to stop. Carers get less than £2 an hour based on the 35 hours care minimum they must receive.

The state need to provide better care facilities for those with disabilities when they reach adulthood. For everyone's sake.

[quote welcome2021]@SionnachRua this was a lesson I only learnt in the last year or so. I've spent 30 years having it drummed into me that I was expected to take over as mother of my brother when my mum dies. No matter how much I explained that I have my own life and family it was ignored and I was told I'd be expected to look after him when she dies.

OP. The issue here is with your parents.[/quote]
Yup, right there with you. I do understand that the sibling taking over would be the easy fallback for some parents but it's so wrong to raise a child as an unwilling keeper of another. Even now my dad will hopefully talk about "oh when you and your brother patch things up"...never, ever. Unless perhaps personality transplants are invented.

Unfortunately OP, I've also learned that you can't make your parents see or do anything. All you can do is say your piece and then protect yourself and your family as best you can.

If there had been forums like this when I was in my twenties I would have been able to see the wood for the trees a bit sooner. As it was I was conditioned from a young child into believing that my brother was the only person who mattered in my family and keeping him from kicking off was the most important thing for us all. Can I state again, this is not the fault of my brother.

@intothewoodss

You've got this so wrong.

Try imagining it this way... the wheelchair user DOESN'T KNOW that using the wheelchair will help them. They can't see how it would help them because they have been managing fine without it. They are terrified of using the wheelchair. Every time the wheelchair is mentioned or brought out they become so stressed and upset that they have physical reactions to it.

Or maybe just don't even try to analogise and make up bullshit comparisons between one type of disability and another.

Except this non wheelchair user can do change on within his own terms.

Change is possible if managed.

Its not that change is impossible. Just difficult.

The lack of acknowledging this and looking to adjust on this basis for the long term for his own interests is outright cruel because he will hit a point where change just happens on a large scale which he cannot be in control of and isn't managed because he is so dependent on his parents maintaining his routine.

A long term planning strategy for those with both physical and mental disabilities is essential. Its not about analogies which are bad. Its saying if you are dependent on others for care, it doesn't matter what your disability is, you are going to have to deal with change because carers aren't immortal.

It may upset the autistic brother to discover this, and he may struggle to deal with it but its not a choice he has nor is it something anyone who has 'been educated' (a phrase which is used in an abusive manner too much) can prevent.

It happens. Prepare for it to minimise the distress that it will inevitably cause. Even if this is difficult.

It sounds very much like the parents in this case arent really fully coping, and yet their health needs (both mental and physical) are somehow irrelevant and the only one who counts is the autistic brother.

No this absolutely isn't right and shouldn't be framed as such. It should never be framed as 'impossible to change' for this reason. It should always be framed as 'needing managed to support to change to enable long term care plans which are suitable for all parties'.

I haven't read all of the thread.

I have two children who are autistic. My 11 year old's opinion is to remember that it's not your brother enforcing all of these rules, it's the autism and the related anxiety. Although we appreciate it is exceptionally difficult for you.

I also believe that I'm on the spectrum. I echo what another poster said that my 20's were tricky. I took longer to grow up and I needed my parents support.

I also get the self harm and the worry that goes with that if things don't go their way. That awful feeling in your stomach when you know things are going pear shaped/meltdown/starving themselves.

Regarding your daughter, I've been told that you g children can be tricky for autistic people because they can be unpredictable. They might suddenly jump up and start spinning around and give the autistic person sensory overload. So, it's not likely to be your daughter, just that she might behave like most kids that age and be unpredictable which is scary to some autistic people.

Could you parents make small changes. Mum is coming home today at 12.01 not 12.00. While you're waiting for Mum, you can watch TV, play with a sensory aid, speak to Mum on the phone. Do this every day for a few weeks to a month and then make it until 12.02 etc

I think that you will need to start introducing the idea of carers now for when your parents need more help. So the carer comes while Mum's there for a few weeks. Then mum's out in the garden for a few minutes while the carer is still in the house. This could take many months but until your brother can have someone else with him while Mum is off doing something.

Of my two children, I think that one is going to need possible assisted living. Both will definitely take longer to grow up but one I think will take much longer. They are almost a teen but they are not safe to be out alone. They still need help with dressing, washing, bedtime etc. My other child needs some help but not as bad as the other child. But they have no concept that they're incapable of looking after themselves. Your situation has given me a heads up that I need to slowly let someone else help me to help my child cope without me one day.

Also, apply for disability benefits to be able to pay for that carer.

You have my sympathy. It must be so hard on you. People don't always realise that caring for disabled people impacts the whole family.

@welcome2021

If there had been forums like this when I was in my twenties I would have been able to see the wood for the trees a bit sooner. As it was I was conditioned from a young child into believing that my brother was the only person who mattered in my family and keeping him from kicking off was the most important thing for us all. Can I state again, this is not the fault of my brother.

Yes, the same happened to me. My father was also adhd. I grew up not knowing about boundaries and had a devastating mental breakdown when I reached adulthood and have been on meds all my life. My sister also suffered and has anxiety and panic attacks.

My brother died because he abused alcohol and it killed him in mid life.

Despite everything I loved him dearly and miss him every day. But I won’t pretend my childhood wasn’t marred or that I didn’t live in fear sometimes.

Good luck OP 💐

I'm waiting for an autism assessment, one of my children is waiting on the final stage of an ASD assessment and I've done a lot of work with people at various points on the ASD spectrum over the years.

Would he respond to (gradually) being introduced to the idea of "planning" out his week and feeling that HE controls it (within the limits of what you're trying to achieve)... so give him a plan for the week and so many "cards" or pictures or whatever for days he can see dad, days he can choose to do things with mum - so he starts to feel that he can sit and plan that out... then you could phase in what YOU want to be doing each week so if he wants to see dad on a Thursday - your picture is there already so he knows it'll be dad+you, or he'll have to pick another day to do it. Kind of coming at it from quite a PDA management via choices of options you want to achieve anyway but letting him feel like he's got control over it manner. Might also mean he's got a tool later on for slotting things like appointments in and whatever else as time goes on. If he has something visual that HE feels he's had ownership in creating it might help to both increase his understanding of life (some of the challenging behaviour may well be him hanging a sketchy understanding of some concepts onto a routine so he can get through things), drop his anxiety down a bit and give him something to hook his days onto.

I just think that is someone called someone else fucking annoying because they were blind or deaf or in a wheelchair it would not be as acceptable

I can't use stairs or walk for more than a minute before needing to sit down. It's fucking annoying for my friends who have to suffer the same restrictions when we're together. It's fucking annoying for me as well. This is okay and not disablist.

And I also tell my NT other child that it is perfectly OK to feel frustrated, pissed off, wound up, annoyed and everything else toward her sibling at times - and that it does not make her a "bad" person - it makes her human and even the most saintly of siblings annoy the living daylights out of you at times (look at Perfect Peter in Horrid Henry). It's how you manage those emotions that counts - not trying to pretend they're not there.

@CoffeeWithCheese

And I also tell my NT other child that it is perfectly OK to feel frustrated, pissed off, wound up, annoyed and everything else toward her sibling at times - and that it does not make her a "bad" person - it makes her human and even the most saintly of siblings annoy the living daylights out of you at times (look at Perfect Peter in Horrid Henry). It's how you manage those emotions that counts - not trying to pretend they're not there.

Thank you so much for the understanding, thats absolutely how I feel. I feel an awful person for feeling frustrated that I don't have the relationship I wanted with my parents and annoyed that because of the autism my brother is this way.

Generally he's a lovely person, just not very flexible which of course isn't his fault.

Thank you also @CoffeeWithCheese I like suggestion of a timetable that'd work. I think I'm going to aim to see my mum on the night my DD is with her dad which is one weekend a fortnight. I am not going to thrust my DD on my Brother as it wouldn't be fair to either of them.

I wonder if you have ever had that conversation with your parents 'how do you see things working out for [brother] when you're not here any more?'

I’m sorry you’re having to deal with this.

My teenage son is severely autistic and I see the huge impact it has on his siblings. I worry about him as an adult.

I adore my son but I can’t pretend he hasn’t made life harder and less enjoyable for his siblings and it’s very unfair sadly.