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.

Tom is an adult with full capacity so his mum won't be involved if you contact adult social services will she if you get them in now? He seems bright enough to be shown how to manage a house and money and take in the information.

I’m not sure if you’ll know the answer to this, but you say that his mother manages his pup and gives him a certain amount each week. Do you know if the money actually goes into her account or his? And if she’s giving him a set amount each week I’d be worried about what the rest of his pip is being spent on, and whether there’s any saved each month, in an account for your nephew?
Your aunt’s anxieties are definitely causing considerable, everyday problems for Tom. He is no way ready for total independence, in a practical sense, as he’s basically been treated like a ten year old for almost a couple of decades, as she does everything for him. She clearly doesn’t see him as an actual independent adult at all, and as you’ve pointed out he’s not even prepared for when they die. Surely your Aunt (and uncle, he’s as responsible as your aunt is) can see that he’s not going to be able to cope at all when they’re not around if they keep this up? Surely there’s got to be some kind of “living skills” group that can be found locally, possibly through adult social services? Do you think your nephew would be willing to try this as a first step? At some point tho he’s going to have to stand up against his parents if he really wants an independent life.
Btw, I’ve not seen this, so forgive me if I’ve missed it, but are they paternal or maternal aunt and uncle, and is either your mother or father still around and can tak to whichever sibling they are?

He will have full capacity in the social services sense (ie is mentally capable if making decisions) but given ASD diagnosis and pip will need support and teaching to develop the skills for independent living.

in your shoes I would look at what he needs and start trying to teach him it. Cooking being an obvious example. In a similar situation I taught my kids over time ten basic dishes.

could a relative take on having him over one night a week to teach him some cooking skills?

slow and simple will help both him and his mum

You can contact his local council and ask for an Adult Social Care Needs assessment on his behalf - or even with him present as he can request it. The control his mother is exerting may actually constitute abusive control, even if it is coming from a place of ‘love’, so they are obliged to step in if he/you request help.

They can look at options such as moving him into supported living accommodation or simply into social housing and setting up care in the community to scaffold him into the basics (doing his laundry, managing his money/shopping, keeping his home clean).

You can also call the National Autism Society (NAS.org) and they will have counsellors/advisors there who can walk you both through steps you can take to ‘emancipate’ him whilst ensuring he has support.

We are in the process of doing this for my ASD/ADHD DD, as we want to be reassured that if anything happened to her dad and I tomorrow, there would be a support system already in place to ensure she is able to function and live safely in our absence.

Woah - his mother manages his finances and gives him some each week as 'spending money'?

He's being financially abused.

Tom needs to tell benefits to pay him directly and that his mother is basically abusing him. Thats what it boils down too.

As others have said, I would look at doing a safeguarding referral for him, his mum holding onto his money and other behaviours don’t sound right, pretty abusive.

Sorry, I haven’t read the whole thread yet - my sister has autism with a learning disability. Tom sounds more capable but less experienced than she is. She lives at home with my dad, but one thing that has been massive for her is attending a day centre. She has funding that pays for this. She goes two days a week and chooses activities - they have a ‘plan it, buy it, cook it’ one she loves, and they even have their own ‘radio station’ which they have to run, but there’s also a cafe the service users run that friends and family can go to visit. It’s given her a social life and has really improved her confidence. She’s in her late 30s and there’s a real mix there, unlike the ‘independence’ college course she did at 16-20 which was all young people.

We want to get her into a sheltered living environment but she wouldn’t have been open to it at all without the day centre first. I really recommend trying something like this to help the whole family get used to building their confidence of him having independence with support.

I would say your aunt sounds extreme, but it is so so easy when you have a family member with difficulties to get stuck in an assumption ‘x couldn’t do that’ which is only proved wrong when it has to be.

When my DM died, my sister took on responsibility for all the laundry in the house having never even touched the machine before, and my Dad (also likely ND but never diagnosed) had to step up and cook for them both. They manage.

Also, I really do think that Tom and my sister’s generation were the last ones to properly fall through the cracks. There was no obvious pathway after a difficult mainstream schooling experience, and my sister didn’t even get diagnosed till I arranged a private assessment as an adult. My parents always thought social services’ only job would be to ‘take her away’ so didn’t get them involved. Instead I did, many years into adulthood, once we had a clear diagnosis and after DM had died. I’m sure the situation is more complex than fully represented here - I don’t know if a totally capable adult, even one with ASD would allow this to happen to themselves, so I imagine your aunt’s anxieties have built up over years and years of managing Tom’s challenges with no outside support, and have now calcified into something unhealthy. I have a lot of empathy for everyone involved.

Two excellent posts @DC555

Money management is also crucial for independent living. I trained with someone, a single mum, who's 17 year old would spend all his PIP allowance within a week. She was advised to get POA. She was working all the hours to pay for the bills and keep afloat.

Agree with @DC555 as so many have said. I also would suggest a day centre.

I know a few cases like this with more or less capable adults but families not wanting to think about long term implications. So I would reassure you that social work teams I’m sure will have come across it before too.

I feel for Tom’s mum but she is the main issue. Could anyone step in and do proper tough love? As in I’ve called social services with Tom’s permission they’re coming to chat stuff through on xxx date. It’s a nuclear option but feels like it needs doing to break this impasse.

Without wanting to scare you either I think the fact they’re getting older could be tricky. If they get into a situation of needing care I wouldn’t always trust those in hospitals to think a grown son might not be capable of care/managing things. IME if there is a family member around it’s easier to assume they’ll cope and get hospital bed back. This is slight disaster level worrying but it’s good to be aware of the possibility.

Does his pip get paid to him , or in his mums bank account ? it leaves him very vulnerable if she becomes incapacitated .

So how is he going to move out if he can't even make these challenges to date? I think you should look for his local self-advocacy support charity for people with LD and Autism. Don't worry too much about his diagnosis; they'd probably be willing to help him help himself even if he doesn't officially have a LD because he's been incapacitated by parental attitude. Where does he live? I can see if I can find out the nearest service.

I know exactly the same situation you're describing. It's time for supported living, he need to taste the independence and learn, your aunt uncle need to let go. He will have skilled workers with him to show the basics, someone there 24/7 to support.

They've been amazing but can't continue to look after him forever. Better now than 10/20 years down the line. Xx

I'd make an appointment to speak with Adult Social Services & ask their advice & what options are available to your cousin. His Mum might not have liked them being involved in the past but it's up to your Cousin if he wishes to use their services. Also arrange for you to be with your Cousin when he mentions his plans to move out in the near future. Try reassuring them you're getting help & advice from the professionals & that he won't move out until he's confident he will cope on his own. Let them know you'll support him as much as possible & that he needs to learn to cope on his own as they won't always be around to look after him so it's better he learns now with their support than when they're no longer there to help him..

i echo other posters: this is abuse - coercive control and financial abuse. It needs to be raised with your adult social care as a safeguarding issue. He has been prevented from growing up, from having independence. He will be unable to advocate for himself- well, he will need support this will be difficult. To the previous poster saying he is a grown man, he can't "let" his mother control him, this is like telling an abused woman to "just" leave her husband. its not so easy. The Aunt clearly has mental health issues so you could raise that as a concern with adult social care as well - as it sounds all three of them are vulnerable. Definitely raise this -with adult social care, with the police its a safeguarding issue and financial abuse

He's being financially abused.

That was my first reaction reading that. She might not think she's doing that, and she might think she has the best of intentions, but it's still financial abuse.

You could help him apply for a council house. He should have higher priority as a vulnerable adult. And i agree with others about helping him to refer himself to social care for a adult social care assessment.

My MIL carried on like this with her daughter. She pretty much made her dependent on her parents by not letting her do anything. It becalms a vicious circle because the more she was forbidden from doing ordinary things, the more she was unable to do ordinary things and she was scared of the world really.

She was further separated from the real,world by having no experience and therefore nothing to say. We were at the stage where we were talking about what was going to happen to her when her parents died. Then one day out of the blue she was dating a man, I assume she met him on a dating app.

She started a relationship and then they got married and she went from being someone who I thought had learning differences and who I would have to have living with me to a woman who had her own home, husband job and when she was forty a baby.

I think my MIL just kept her at home for her own benefit. She always put out the narrative that SIL could not really manage to do much without support. Turns out she’s totally fine.

My cousin has a learning disability. I'm not sure what her exact diagnosis is but she's high functioning, if somewhat child like in her personality. She's able to cook and she's had a part time job before. She's now mid 40s and has recently moved out into her own place for the first time, having lived with her parents all her life. This has been organised through an independent provider of supported living in her home town. To start with she has a lot of support to learn to live independently and the provider will gradually reduce and withdraw their support as the individual gets more confident and competent. It's worth speaking with adult care services in your area to see if a similar programme is available. They do rely on the individual having a supportive family to help with this. If your aunt and uncle aren't supportive, you sound as though you care enough to offer some support to your cousin. It's in his best interests.

Hi, have you thought of assisted living, my autistic daughter started off in assisted living accomodation, then with their help and intervention was fully able to move out and rent independently after two years.

This is the best way forward. Or you call them. Sounds like his mother has an unhealthy amount of control over him.

As much as I hate the idea, I think you or your cousin need to get social services involved. As much as your aunt is probably not treating your cousin in this way because she WANTS to hurt him, she has been hurting him for the last 12 years. This needs to stop.

What about the shared lives scheme?
(Sort of lodging with a family who provide some support)

I've contacted the Social Services (in the area where they live) today. My Cousin and his parents don't know I've done this.

I spoke to my cousin again last night and it sounds like things are getting worse between them. They had another row the other day because my cousin wants to start going to a local sports club and once again, she refuses to allow him any independence.

I'll update once SS have visited them.