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 don’t think you’re that unreasonable
Has he had any professional help to manage his autism?

how old is your brother? If he is an adult, maybe your parents need to start looking at a long term solution for him that will give them more freedom and will enable your brother to develop some new routines around activities he can do with carers? I have two children with ASD and whilst I do everything I can for them, I am aware and planning for their future. I fully expect them to live in their own homes with support. I would still be heavily involved but they need to be settled away from me for their own long term well being.

@Shoxfordian

I don’t think you’re that unreasonable Has he had any professional help to manage his autism?

No help at all, we've asked for it but been told there's nothing for adults at all.

I think it’s fine to feel a bit hard done to. Recognising why your brother is why he is doesn’t necessarily make it easier to live with. It’s fine to grieve a little for what you have to miss out on.

@cansu

how old is your brother? If he is an adult, maybe your parents need to start looking at a long term solution for him that will give them more freedom and will enable your brother to develop some new routines around activities he can do with carers? I have two children with ASD and whilst I do everything I can for them, I am aware and planning for their future. I fully expect them to live in their own homes with support. I would still be heavily involved but they need to be settled away from me for their own long term well being.

He's in his 20s. We've asked for professional help and been told there is none for adults with autism. He's had his diagnosis since a teenager, but thats it, no support since.

I don't think you are being unreasonable. It sounds tough.

I don’t think you’re unreasonable. I think it would be better to support your brother with the skills to cope better with change rather than living life to his schedule.

I say that as mother to an autistic boy. We support him to the best of our abilities, but we don’t let his needs impinge on his brother and sisters’ needs because that wouldn’t be fair. The world won’t change for my son so we try and help support him to cope with the world.

Do your parents have any support with him? It sounds very hard for them.

I don't think you're being unreasonable at all OP. Sounds tough on you all but that you're being de-prioritised due to his needs

@Kanaloa

I don’t think you’re unreasonable. I think it would be better to support your brother with the skills to cope better with change rather than living life to his schedule.

I say that as mother to an autistic boy. We support him to the best of our abilities, but we don’t let his needs impinge on his brother and sisters’ needs because that wouldn’t be fair. The world won’t change for my son so we try and help support him to cope with the world.

Do your parents have any support with him? It sounds very hard for them.

As the mum to a nearly 17yo ds with autism I agree with this.

It's fine for him to have his routines. But he needs to learn that his routines shouldn't prevent others from having their own lives.

He needs to work on his routine for visiting dad to be 3 days and one of those not being tues or sat as you also need to visit.

Yanbu. He is holding all of you under his control. can't you all sit down and work out a routine where everyone has a say. Your poor mum, her life must he so miserable being controlled this way.

I am a sibling of an adult with autism. Also work professionally in the field. Totally understand the reasons he acts the way he does but he has a similar impact on my life so also can feel disgruntled about it all. I don't think there is much we can do but it is OK to feel upset about it. I must admit once when my mum was ill in hospital I was juggling the kids and visiting he wanted something routine wise I Considered ridiculous (I know it isn't to him but I was tired and cross) I lost it and crossly told him could he just try and not be so ridged for once as I need you to do XYZ. He is still a person and saw my emotion and did them comply (probably at personal cost to him self stress wise) but you know what sometimes it can't be all about them and their needs as the on going cost is to the rest of the family. People with autism do care and can have empathy it just needs communicating in a different way

@Kanaloa

I don’t think you’re unreasonable. I think it would be better to support your brother with the skills to cope better with change rather than living life to his schedule.

I say that as mother to an autistic boy. We support him to the best of our abilities, but we don’t let his needs impinge on his brother and sisters’ needs because that wouldn’t be fair. The world won’t change for my son so we try and help support him to cope with the world.

Do your parents have any support with him? It sounds very hard for them.

No support at all, they've asked GP, SS and local support groups which only go up to age 18 so they're left with nothing, neither can afford to pay for support elsewhere.

Is he under 25?

Haw you spoken to adult social care? Have you spoken to any autism charities?

I’m not saying there is defo agent support there but I think it would be good to start thinking about trying to find some.

I feel sorry for you and your mum. It is very restrictive. When you say he “can’t cope” how does that manifest itself?

Yes, it’s very hard to have a disabled family member. Things do tend to revolve around them due to their disability. I do feel for you, but don’t think anything can be done about it. I feel sorry for your parents as well because this will last the rest of their lives and I’m sure they worry about your brother and how he will cope when the routine is broken.

You’re forced to be independent and separate from your parents. Can you speak to your work about getting a different day off?

@The3Ls

I am a sibling of an adult with autism. Also work professionally in the field. Totally understand the reasons he acts the way he does but he has a similar impact on my life so also can feel disgruntled about it all. I don't think there is much we can do but it is OK to feel upset about it. I must admit once when my mum was ill in hospital I was juggling the kids and visiting he wanted something routine wise I Considered ridiculous (I know it isn't to him but I was tired and cross) I lost it and crossly told him could he just try and not be so ridged for once as I need you to do XYZ. He is still a person and saw my emotion and did them comply (probably at personal cost to him self stress wise) but you know what sometimes it can't be all about them and their needs as the on going cost is to the rest of the family. People with autism do care and can have empathy it just needs communicating in a different way

I think if it was just me or I had a partner to help with DD i'd be ok, but as it is I've had to ask for support from none family to help me as my DBro won't compromise, I've told him, and he says he cares about me and my DD but can't change.

He wasn't diagnosed until 16 so I think we've just been left to deal with him rather than have the help when he was younger.

@Atalune

Is he under 25?

Haw you spoken to adult social care? Have you spoken to any autism charities?

I’m not saying there is defo agent support there but I think it would be good to start thinking about trying to find some.

I feel sorry for you and your mum. It is very restrictive. When you say he “can’t cope” how does that manifest itself?

Over 25. Spoke to Adult SS and they said they don't support people with Autism unless they have no family, local charities and support groups only support until 18.

NAS don't have a local group although referred us to the nearest one, but it's quite a way away so not a massive help.

He can't cope - he shouts and can be quite scary with it, he stops washing (washing is part of his routine so he does it) he stops eating he has been known to lock himself in his room and refuse to talk to anyone, mum had to get the fire brigade out when he did it once as he'd been in there for 3 days, he doesn't have an ensuite so she wanted him out.

@PlanDeRaccordement

Yes, it’s very hard to have a disabled family member. Things do tend to revolve around them due to their disability. I do feel for you, but don’t think anything can be done about it. I feel sorry for your parents as well because this will last the rest of their lives and I’m sure they worry about your brother and how he will cope when the routine is broken.

You’re forced to be independent and separate from your parents. Can you speak to your work about getting a different day off?

My DD has an after school activity on that day so I took it off deliberately to be able to take her to that because I knew neither of my parents would be able to help.

And what happens if one of your parents falls ill? Will you be expected to pick up the pieces? The sad reality is that parents usually pass away before their children - your DB sounds like he wouldn't cope if anything happens to your parents at all. And living like that is a recipe for your parents to to get ill. None of this healthy for anyone.

How happy are your parents to live with these restrictions? If they also want more flexibility then you can work together to get there. If they're not willing to change things, there's not much you can do.

As an adult with high-functioning autism, I agree with others that is nigh-on impossible to access any kind of support, particularly if you are able to function to a degree (i.e. verbal, living with supportive family etc).

OP, you say your brother is in his 20s and was diagnosed as a teenager. I am in my early 40s and was diagnosed with what was then classified as Asperger's at 33.

I am very 'high-functioning' - I am a home owner, have multiple degrees, in a long-term relationship, have a senior professional job etc - but I was, without a doubt, at my most 'autistic' during my 20s. The transition from 'quirky child/teen' to 'neurodivergent adult who looks 'normal' (I'm sorry, I hate that word too) but is struggling to cope with this new part of life' was at its most evident then.

However, while there are no quick fixes, there are ways around this. Many autistic people (I am one of them) fixate on routine and dislike change, but that doesn't mean change is impossible - just that it will take a little longer than for most NT people.

Your parents can help your brother by expanding a little and making it very clear - 'I normally leave the house at 12pm and return at 3pm, but today I will be leaving at 11.30am and returning at 3.30pm', for example.

With regard to the relationship between your daughter and her uncle, do they have any shared interests, such as reading/jigsaws/mechanical engineering?! Help your brother to engage with your daughter in a way he feels comfortable and hopefully the relationship will progress. Small children are often, by nature, quite chaotic and difficult to understand, so small steps may help both feel more comfortable in each other's company.

I appreciate that that won't resolve the situation overnight, but with time, it may help you develop a more functional relationship with your family.

I have been enormously lucky to have been blessed with a supportive partner, friends and family and I am aware that my approach to life makes things difficult for them sometimes, but, like your brother, I am not being awkward or difficult on purpose.

I wish you all the very best.

@IAmHereButNotHere
I see. Well it’s good you are prioritising your DD. Wish I had advice. All I have is sympathy for you.

That sounds so awful for you all. Especially your poor mum.

If he’d had an EHCP when he was diagnosed things might have been easier. Not that it helps you now.

With lots of notice and preparation would you be able to alter his routine? For example start talking to him now about changes you want to see in January? Does he have any support tools he uses things like you could make a social
Story with him about something you’d like to change and implement into his routine. Like a day trip with your mum?

for you. As helpless as they are.

I agree that your parents need to work on developing his coping skills & independence. They need to do it gradually but they aren't doing anyone any favours by completely pandering to him like this.

One day they won’t be around. He needs to get used to change & managing other people around him.

Having a child with asd myself, I'm preparing my son the best I can for the world and an independent life.

There are adult support systems out there. There are social workers, clubs specifically for adults with asd, the national autistic society, college and universities also have lots of support available if he's at either of them?

@ClaryFairchild

And what happens if one of your parents falls ill? Will you be expected to pick up the pieces? The sad reality is that parents usually pass away before their children - your DB sounds like he wouldn't cope if anything happens to your parents at all. And living like that is a recipe for your parents to to get ill. None of this healthy for anyone.

My mum had an operation a few years ago and was unable to help with things like cooking, my brother didn't cope at all. I tried to help but my brother didn't like it, I had to juggle to keep DD who was only 4 at the time away from him, and it was impossible.

I have no idea what will happen when both my parents die, he can't cope with my DD so I'm not an option - I haven't ruled out more DC in the future if I meet the right person so that could complicate it even further.

Both my parents are in their 60s. In response to @HeyDemonsItsYaGirl they both want to change things but don't know how to, and are left with no support to do so. Ideally he'd live independently and either they'd visit him or him them or both but there would be room for me and DD to visit too. They both want to see and spend time with DD, I don't even want regular childcare at a set time every week but it would be nice if I was running late from work I could ring my mum and say "Can you get her from school?" rather than having to call the school and beg them to have her longer. Mum would love to occasionally pick DD up from school and take her for an icecream or to the park but she can't very easily at the moment, my dad would love to have us both for tea or to let us walk his dogs over the nearby hills but if it's a day my DBro is there then we can't be.