My Aunt won't let her son be independent because of her anxiety

[PrawnDippers]

Posting here for traffic. This is a very complicated situation so I will try to keep it relatively short..

My cousin (I will call him Tom, not his real name) is in his late 30's has a diagnosis of ASD. He's bright, very intelligent, capable, usually sociable and overall a lovely person to be around. He has full capacity and is able to make his own choices and decisions

Tom has lived with his parents his whole life. He's an only child. He's never had a job, never had to be independent with money or with life skills. He has few friends and he's never had a relationship afaik. He left school at 16 (with a handful of gcse's) and never went to college etc.

Tom's parents (my Aunt and Uncle) have cared for him his entire life. Cooked all his meals, done all his washing, tidied up after him, managed his money etc. His mother has very, very bad anxiety herself but won't accept she has a problem or accept any help for it. Most of her anxiety is focused on that something bad will happen to Tom if she doesn't look after him properly. Because of this she's refused to let him grow up in many ways and be independent. For example she won't let him travel on a bus or train by himself in case it crashes and he dies... She won't let him get a McDonald's etc in case he gets food poisoning and dies from that. It's extreme to the point where she has a panic attack if he leaves the house on his own. He knows this so now he just doesn't go out because it isn't worth her upset. His Dad isn't much better and will do anything to keep the peace and my Aunt happy.

Tom came to me recently asking for advice. They have had a number of serious rows in recent months (usually because Tom wants to go out or do something without his parents and his mum refuses) and it's escalating.

He now wants to look at moving out of his parents house. The problem is that Tom has lived such a sheltered life, that I don't think he would have a clue how to live independently. We have looked at supported living houses (where he would have his own room + staff on hand 24/7). However most of these set ups seem to be geared towards people with less capacity and more learning disabilities than Tom has. Because of this he isn't keen on the idea.

He can't move in with me and there is few other family members that he could.

He says that he wants his own flat where he can come and go as he pleases. We also looked at him potentially having a flat of his own but with support workers or carers coming in daily. But i think we're concerned about how his Mum would react to this and someone else "caring" for him. She doesn't yet know about this plan to move out. I have encouraged Tom to tell her but understandably he's concerned how she will react (I suspect not well based on previous experience).

Fwiw adult Social Services have been involved with Tom/his parents in the past. His Mum didn't like them "interfering" and got rid of them as quickly as possible.

Any suggestions on how to raise the idea of Tom moving out with my Aunt and Uncle moving out would be appreciated.

If Tom has several GCSEs and is capable and has capacity I don't think he would meet threshold for supported living or a funded care package (I work in a similar area) he might be able to access some sort of help in to work scenes where he could meet new people? That might help with confidence or try a college course with a life skills element before he moves out.

Honestly it doesn’t sound like he’s ready to move out to me. You say he has full capacity but also that he’s never had a job or gone on public transport. How would he afford to live on his own etc? Supported living may well be the best option even if he doesn’t like it.

He has PIP and benefits. These are managed by his mother at the moment (with him getting a set amount each week as "spending money")

I agree completely that he isn't ready to move out and live independently. He's quite naive and I don't think has a clue how hard it will be initially - I worry that he'll try it, quickly freak out and go running back to his Mum and Dad. Never to attempt it again. Which is the last thing anyone wants

Supported living - ideally we're looking for a set up where he can come and go as he pleases, but still have support 24/7 onsite. Unfortunately he seems to fall between the gap in such services. That he has complete capacity and is able to take himself out for short walks etc, but still needs support with basic everyday living tasks like cooking.

I have tried to encourage him to look at a college course that focuses on independent skills like travel training etc. He was quite keen to look at it but his Mum won't even consider the idea in case "something terrible happens to him at college" 🙄 she's the biggest obstacle to all of this currently

How old are your aunt and uncle?, could you have a conversation along the lines of the fact that they aren't going to live forever and therefore wouldnt it be a wonderful idea to help Tom gain some independence now?

How old are Aunt and Uncle? Could someone introduce the question of what will happen to Tom when they are no longer around, if he doesn't develop his independence? He should be learning how to handle his money, how to cook and look after a home.

If I were you, I’d encourage him to call adult social services and explain his situation. At the very least, they should investigate him not having access to his own money. I suspect that would open up a can or worms which will be difficult for everyone but will hopefully lead to him being supported towards more independence.

But if he is in receipt of PIP, he’s comparatively impaired by his condition, surely? Someone with ‘full capacity’ wouldn’t have let this situation happen in the first place, far less continue till he’s knocking 40…?

That level of support does exist, but the number of support 1:1 hours will be very limited. There’s a young lady that lives at dsd’s supported living that has a key, cooks her own food but she has a support worker 1:1 for 4 hours a week and the house has staff 24:7 because some of the residents need it

They are in there late 70's. My uncle has been in and out of hospital over the last few years and both are in relatively poor health these days.

I have previously tried to raise the subject what will happen to Tom once they die or can't care for him anymore. Other relatives have tried to do the same. We just get the same answer that there's money in there will/s for him.

So there's money for him/his care but there's no plan in place or pathway to help him into independence. She won't discuss if further (trust me I have tried on this, it's like talking to a brick wall).

There are normally “life skills” type courses at colleges but generally in my experience the people on those would not have GCSE’s really, and they’d all be younger so under 25.

I think I’d be inclined to agree with your assessment that what you’re looking for is very unusual - people who cannot look after themselves would not normally be “free” to come and go.

How local are you? It’s so lovely you want to help him.

We're about 2 hours away. We try and visit every couple of months, and I speak to cousin via social media regularly. I've previously offered to help him with things like basic cooking and travel training but again, he won't entertain the idea unless his mum is onboard for fear of upsetting her. Which she is 100% is not currently

Are you able to have him round to yours on a fairly regular basis to help him learn a few basic skills e.g. cooking, doing a load of washing etc? I feel he needs gradual steps to build his independence over time, away from the home so his mum can’t interfere. Or perhaps there is a local cooking course for beginners he could attend. As for her having a panic attack if he leaves the house, I am sorry but tough. It’s so unfair to hold him back with this emotional blackmail.

Ah sorry cross post with you. He will have to somehow find a bit of backbone if he truly wants things to change.

I hear your frustration! It all sounds rather selfish to be honest. Its not just a case of when they die he'll get inheritence, they may become physically to unwell to care for him, or need to pay for care - then what happens when the heritence has been spent.
I think you need to start thinking about how involved you are in all of this OP. I forsee the responsibility for sorting Tom out falling to you when the inivitable happens.

you could raise an anonymous safeguarding concern by contacting the local authority he lives in. You should be able to do it online, report all your concerns, including his parents ages, health concerns and mention that he has expressed he wants to live independently.
With what you have said in your OP I think it should meet criteria for further investigation. You may find on the form there is a section that asks if the person named requires an independent advocate, in this case I would say 100% yes.

This is very good advice. Not having access to his own money and being kept inside the house is a massive safeguarding issue.

He has been granted PIP. He should be using this towards his independence, like maybe getting a taxi to the shops or getting a carer to take him out. Its not supposed to be his pocket money whilst he never works.

Surely them withholding his benefits is abuse? Actually the whole situation is abusive but it would be better if Tom got his mum and dad on board with his plans for independence even if it still gave them a degree of control. Any baby steps he could make to improve his confidence and life skills is a bonus. He needs to tell her that he wants to be free and he’d like her help.

he needs to start showing her hes not taking no for an answer and ask for her help to learn skills.

eg “mum i want to do the washing this week will you show me how to operate the machine and all i need to know about that kind of thing, temperatures, colours etc”. if she says no he needs to say “if you dont tell me i will phone my aunt/cousin/whomever to go to her and do her washings”. at which point mum will relent and say ok fine i will show you.

same with other things like cooking etc. he just needs to keep asking. if she says no he needs to involve adult social work.

I think you need to get adult social care in to advocate for him. You can’t directly as mum will fall out with you but you can be involved in meetings with Tom and adult social care and help him set these up.

And yes say it’s safeguarding when you contact adult social services

Your Aunt's fears are the heart of this problem, she's loved and cared for him all these years, now she can't let go and he won't upset her by going against her. It's very sad, with all good intentions your Aunt's wasting her DS life. I'd speak to Adult SS and any relevant charities to see if there's any help availabke Op

I would definitely contact adult social care in his area, and look at whether his local council does the "shared lives" scheme and whether he would be suitable. This is where people move in with a family who help them with independence skills. I'm not what the qualifying criteria are though.

She is seriously at risk of falling foul of coercive control laws, we tend to think of coercive control being between intimate partners but in reality it can be between any connected persons aged over 16. Going to the Police might feel like the nuclear option but I would seriously consider reporting to Adult Services, not for a routine Care Act assessment (which it sounds like he's had before), but specifically to the adult safeguarding team.

Maybe as a pp says, you could support him with learning to say 'no' to his mother as a first step. He's a grown man, and shouldn't be 'letting' his mother not allow him to do perfectly normal things.

I have a friend with an ASD son in his thirties and she is very much the same as your aunt, but she's looking for supported living for him (he's not as capable as your cousin by the sounds of things) yet she won't teach him how to live independently. She just says 'oh I try, but he won't listen!'

So I'd help him take baby steps towards his independence. He can learn to cook and use a washing machine from Google.