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

13 replies

PrawnDippers · Today 21:40

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.

OP posts:
clareykb · Today 21:48

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.

Zapx · Today 21:50

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.

PrawnDippers · Today 22:06

Zapx · Today 21:50

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

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Ilikewinter · Today 22:11

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?

AlexandraCarrington · Today 22:17

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.

Gazelda · Today 22:18

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.

Velveting · Today 22:21

PrawnDippers · Today 22:06

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

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…?

bababamama · Today 22:22

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

PrawnDippers · Today 22:23

Ilikewinter · Today 22:11

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?

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).

OP posts:
Zapx · Today 22:31

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.

PrawnDippers · Today 22:44

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

OP posts:
swoosher · Today 22:45

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.

swoosher · Today 22:46

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

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