Friend and her son

[Vroomfondleswaistcoat]

I have a very very good and close friend who lives with her autistic adult son. He's able to drive but can't work so he is in the house with her for most of the day every day and he is becoming incredibly controlling of her behaviour. He monitors what she eats and drinks, tries to stop her eating or drinking anything he doesn't approve of, goes through her bins to see what she's had - you get the picture. He's behaving like an abusive partner and she doesn't know what to do or how to stop this.

My big fear is that something will happen to her (not at his hand. he's not in the least violent, but she's in her 70s and could get ill) and he will withhold drinks or food or try to make her behave in the way he approves of (so getting up to cook him his lunch even if she's bedbound with illness).

How can I advise her? At the moment I'm just listening, but I'd like to have something I can tell her to do or something to offer other than platitudes and 'that must be difficult'.

I am in a similar position with an adult son who has significant care needs. The best thing I ever did was ask for help from my local learning disability team - check if your friends son has been assessed firstly - and if not the GP can refer. Then ask for an assessment/support for his care needs, and a referral for some daytime support, particularly a day centre provision. Adults need stimulation from other adults whether the person is disabled or not. My son is now mid twenties, he goes to two separate places for 4 out of 7 days. In one place he does a mix of social, educational, entertainment and the other place does horticulture, gardening, making things etc. My son uses his pip payment to pay his cost but not all of his money is used. He is engaged, active and learning new things all the time. He is picked up in a taxi and dropped off each day, he loves it. I can work without worrying about him and I know he is safe. I also have 14 days respite a year which started just this year, it has been amazing to have that small break and my son loves his home from home. One psych nurse told me on one home visit, boys leave home, and helping them leave when they are middle aged is much harder than when they are younger. It has stuck with me that I was holding my son back from being his own person simply because I worry about him. Whilst I have no desire for my son to leave home, I am conscious that it is not about me, it is about what he needs. Your friend has spent decades in a constant state of worry, it can be hard to ask for help as there has been so little help available and it is hard to trust others. There is help out there though, so if you can hold her hand through the ups and downs of referrals, you can help her change both their lives. Good luck with it and a big unmumsnetty hug to say well done for being a good friend, you are rare! 😊

Thank you, thank you so much for your reply! I think our major problem is that we are quite rural in a large area and there doesn't seem to be ANY kind of provision for adults with autism here. There are no local centres and, as far as I know, no daycare provision. Our nearest city which would have this kind of thing is nearly 40 miles away and he just simply wouldn't go. He does some volunteer work which gets him out of the house twice a week which is something, but it's his controlling behaviour that really needs addressing. He cannot socialise and spends any spare time on his computer, being drawn in to conspiracy theories which he then talks about to his mum, on a loop, for eighteen hours a day.

She loves him, of course, and is quite happy with him living at home but I worry (as does she) that the controlling behaviour is escalating. He will use every opportunity to control her, from parking his car behind hers so she can't go out until 'he says so' (by moving his car), to telling her she's not allowed to do certain things and then following her around the house to make sure she doesn't do it.

Is your friend’s DS receiving any support at all? Is he known to any NHS services?

Have they had social care assessments? A carer’s assessment for your friend and an assessment of her DS’s needs.

Support doesn’t have to be provided via a day centre. There are other options.

He has no support at all. No social worker, no social care, no carer's assessment. Nothing.

I tried to get my friend to go to the doctor in her own right, because she was massively depressed during Covid being trapped in the house with her son as her only company, but she wouldn't go. Her son doesn't go to the doctor, ever. He had one assessment for DLA (he's not on PIP) and that was about seven years ago and that was the last time he was seen by anyone in any capacity.

He is just high functioning enough for them to have washed their hands of him (voluntary work, can drive) but not enough for him to earn or to be motivated to get himself somewhere to live alone (he wouldn't manage this as he doesn't have any knowledge of bills).

It's my friend I am really worried about as he ages and so does she!

Your friend needs to request social care assessments - a carer’s assessment for her and an assessment of DS’s needs.

Also speak to the GP.

Your friend should look PIP and UC. She can request to become appointee.

Thank you so much for this. I shall advise her accordingly (although she's dreadfully passive and likely to do nothing with the information, but at least I will have tried!)

If your DF is so passive it could be that she has ADHD? If that’s the case, offering to sit with her whilst she goes through things might help.

What are her plans long term? You say she’s happy for him to live at home but it doesn’t sound like a happy home to me?

Is she continuing the situation because she’s too scared to initiate change, scared of how he’ll react or possibly scared of being on her own?

I don't think my friend has ADHD (I do). She's not very up on technology and will only use the internet to order books from Amazon (no other internet shopping) so she would never look stuff up online.

She's not afraid of her son, just worn down by his constant talking and repetetive tics. She's in her 70s and getting to the age where she'd like a quiet life just pottering about, but instead she's being nagged, talked at constantly and quizzed on everything she does (his OCD is out of control). I've been gently trying to steer her towards getting him some help but, I suppose because this has been her life for so long, she kind of shrugs off everything I say. Her son WILL NOT seek help himself. He never goes to the doctor or does anything off his own volition, and won't talk to strangers. She can't even have work done in the house as he barrages any workmen with yelling and shrieking, she has to wait until he is out before anyone can come round.

She's just so passive about it all that I'm losing the will to say anything. I'm just being a sounding board for now. I'm kind of hoping that when she comes into an inheritance that she's due, it will enable her to buy her son somewhere he can be independent and she can keep a watchful eye while she's able to.