Struggling with autistic adult son at home. Desperate for help

[QuaintBeaker]

Have cross-posted this on the SN board... but thought i might get more replies on here.

Really struggling with ds1.
He's autistic, dx at 6 yrs old. He's now 21.

I don't want to drip feed, but there's also a LOT of info and it all feels really complex and confusing. So I'm going to lay out the basic issues and can give more info if relevant, on request.

So basically he's been out of education for around 2.5yrs now. Tried unsuccessfully to get a job. Accepted into a supported internship program which starts this September.
This, plus some issues with his UC, are causing heightened anxiety and an increase in his controlling and aggressive behaviour.

He has become increasingly controlling, judgemental and paranoid over the last year or so. For example he's decided that our TV remote has to live in a particular box so that it doesn't get lost. He aggressively enforces this with his youngest sibling. If we don't put the remote where he wants then he will take it and refuse to give it back.

He has recently stolen the back door key from his other sibling's key chain, accusing him of not locking the back door at night. He refuses to accept that DS2 may lock it after he (ds1) goes to bed. Our other back door key is missing, so we currently have no way of getting in or out the back door because he won't give the key back.

He decided ds4 is not allowed to have his football goal in a particular place in the garden and has decided where it needs to go. This has resulted in him putting ds4 in a headlock because he tried to move it and when I got involved he was aggressive and swinging the goal around and being scary.

He has previously pushed me over when I've tried to prevent him from standing in front of the TV while ds4 was watching something (stemming from the remote not being put away where he wanted).

This list could go on... it's exhausting. If he was a partner this would be abuse and I'd be told to leave him

I want him to move out into supported living, and he has recently had an appointment with lifelong services BUT:

I don't think he can cope with moving out and also starting his internship.

He tends to very much downplay his struggles, which means he doesn't access support he's entitled to.

He really hates people helping him, even me.

I live on eggshells. I've had input from the police, capa first response, social services, carers support... but nobody can help me with the ultimate issue.

I love him but I hate his behaviour. I can't live with him and I hate what his behaviour is doing to his siblings. But equally I also understand that his perception of things is very real to him and that he thinks he has very good reasons to do the things he does.
If i force him to leave home my fear is that he will become even more isolated than he already is and will end up in an incredibly bad place mentally.

How do i best navigate this? How can I meet everyone's needs? I just want him (and us) to be happy in life and it feels like I'm failing everyone.

I'm a single parent. My parents help out where they can but are getting older.

I also have another son who is currently living with his dad because he can't stand being around ds1

I'm so sorry, it's incredibly hard 😔 I have been where you are and what happened with us was a crisis where police were called and my son spent 5 months in an assessment and treatment unit before transferring to supported living. We had to make the heartbreaking decision to say that he couldn't come home to live as it was too unsafe, we had endured the controlling behaviour and physical aggression for 10 years and we were at breaking point. We had a lot of input from the autism and learning disability team from our local council to prepare and find the best place for him.

Honestly it's been the best thing for all of us. He has settled really well and is doing better than I could ever have hoped. Please push ahead with getting your son into supported living, for all your sakes 💐

If he seriously injured your 12 year old, likely, what would you do? A head lock is incredibly dangerous and while he’s getting away with this level of violence and control it’ll escalate so plan ahead. It sounds absolutely horrific, I’m so sorry for all of you but your younger child isn’t having a childhood while he’s living in constant threat and danger.

Well especially if this was because 21 year old wasn’t happy with 12yo placement of a goal in the garden, how does that have an impact on ds1?

Keep calling the police. Keep the pressure up. This isn’t fair on you or your other DC. 💐

This, i think he needs to.be in some independent living with carer support he could continue his internship.

Thanks for all the responses. I know things need to change, I think I'm just stuck in this rut of wanting to do the right thing for everyone and not being sure what that is and not getting anywhere.

Ds1 can't stay with his dad. There is a background of dad's wife being abusive to ds1 (he lived with them for a bit when he was about 13/14).
They then banned ds1 from the house after we called the police because she threw crockery at him.

Supported living isn't necessarily that independent ie it's several people under 1 roof and staffed according to each person's care package.
Also ask about shared lives where he lives with another family thus still giving him independence but has support and guidance from host carers.

Just highlighting this to give an example of ds1 thinking.

He didn't want the goal near the patio doors because he said if ds4 kicked it into the door (if he missed the goal) it might damage the door.
That in itself isn't unreasonable. But our garden is very small, it's the best place for it to go, and I'd told ds4 it was fine.

Ds1 it's incredibly principled and believes very strongly that if he sees a "danger" then he is responsible for ensuring it is made "safe".

There is no arguing with him, he's very inflexible and rigid in his thoughts. There is a right and wrong, black and white, yes and no to EVERYTHING.

I'm not saying that to excuse his behaviour. It was totally unacceptable and I made that known to him. He also knows there has been police involvement and that this is now on police record.

I just wanted to give a little bit of insight into what's motivating his behaviour

Thank you. I haven't heard about shared lives before so I'll check that out

What was going on in their house when she did that?
was he being abusive and controlling there as well?
i think you have to be very careful that your other dc don’t see it as ds1 can do as he wants and be this controlling but that it’s ok.
does your ex//anyone else know about his assaulting the 12yo?

Huge sympathy, and also I get that it isn't always possible to "just make him" do something.

Is there anything you can do further to reduce flashpoints and keep safe spaces for your other children? For example could they have TVs in their rooms so they don't have to fight him for the remote, locks on their doors so they can keep themselves and their stuff safe, do you have a separate dining area could you rework it into some sort of second lounging space? I presume a garden room is out of budget, but it might have been a way to create another space that he doesn't need to control. Sit down your other children and ask if they have ideas. They may surprise you. I have a friend whose teen basically moved into a tent in the garden all summer and had a whale of a time. It doesn't need to look like everyone else's idea of fair or normal.

Non violent resistance course if you haven't already done one.

Pick your battles but I do think you need to sit him down and say we need more keys for the back door, we need to get out if there is a fire. Do you want to give me the key back to get some more cut or I will have to change the lock. Perhaps a deadbolt on the door would reassure him. People have some basic rights such as access to their own home.

I'm just thinking out loud but I wonder you could talk about Maslow's hierarchy of needs and how the house needs to fulfil the basic function of safety & security for everyone in the home. Come up with some red lines that he cannot cross because it impinges on his brothers' (and your) needs. I would put controlling keys in this category. Not rules that you generate, which he might see as made up and threatening to him, but something based on an external framework. You could even draw on UK law perhaps if you have to but something based round meeting everyone's needs would probably be less triggering.

All i know is there was an argument going on back and forth and she threw stuff at him.
She has also previously injured him by tipping him off a sofa when he was about 11 and not going to bed fast enough.

I'm sure that his behaviour at that time was challenging, but she is an adult and he was a child. He was also struggling with the break up of his family home and his intense dislike of her (she was the other woman).

Yes my ex knows about what he's done to ds4, the police and social services know, my parents know and ds4's school knows

Also just to add, the other children all know they can go and stay with their dad any time but they choose not to.

I would prioritize the moving out into supported accomodation over the internship. He may be happier living in his own space where he can be in total control. You can still visit him regularly.

Have they said why? Is dad’s really worse than being locked in/out, being controlled and assaulted? Watching mum being assaulted?

Sorry @QuaintBeaker that reads harsh, I can’t imagine the stress you are all under.

As a starter for ten, I’d get a locksmith out to change the back door and give keys to everyone in the house. I’d also see if I could get a second tv remote. But your autistic son is engaging in some worrying and bullying behaviour - as others have advised, I’d be looking into assisted/supported living as a matter of priority.

None of them like his wife. Other than that I don't know.

I will say that ds1 is OK the majority of the time. Most of the time we muddle through ok. The controlling things are constant, but the violence and aggression are rarer.
Not that that makes it ok, but might explain why they stay here?

Harsh is fine!
I keep persuading myself that the police won't want me wasting their time and will think it's just my shitty parenting. So hearing what other people really think of the situation is helpful I think

How disgraceful of the children’s father to remain married to her after witnessing her abusing his children.

I think you just have to insist to social services that he cannot live with you anymore to force their hand to place him elsewhere. It’s horrible but you really have no other option at this point.

I wonder how controlling your ds1 would have grown up to be, if there had been a “dominant male” in the household during his teenage years. Seems like he has filled the space in a very dysfunctional way, which is really tragic.

I don’t think you are muddling through. You are walking on eggshells, all of you. Even when he isn’t actively angry and violent you are afraid of him - well, your kids are. I know this because I had and ASD older brother and I was utterly intimidated by his violent rages. They were very rare but I would do anything to avoid them. Organising family life to avoid “setting off” your violent adult male child is absolutely awful parenting, I’m sorry but he is now an adult and you have children in the house. You have to put the children first.

This means your ds needs to move outz. If dad won’t have him then he’s homeless and he’ll need to sort his own self out.

These are quick wins and I'd go for those to start with. It sounds a hell of a situation - your son sounds very anxious which he's clearly trying to manage by controlling what he can and fixes onto, and the rest of you sound at the end of your tether.

Depending on your area - there might be a support service for autistic adults with challenging behaviour but no Learning Disability within the health teams (I know our neighbouring area has one but the Trust I work for doesn't - don't get me started on that rant), who can step in when things are reaching the point you seem to be - the words to start mentioning to get people to listen a bit more (we shouldn't have to do this but we do) are "risk of placement breakdown" and "carer stress" - that can sometimes get things moving a bit more because of the drive to prevent hospital admissions and crisis placement moves.

Can the internship be deferred a year if required - might be worth asking that question, getting the living situation stabilised and then dealing with another change after that - again, you could argue that's a reasonable adjustment for his disability (buzz word bingo again). Start pushing the living placement heavily with social care - reinforce that living with the family is not a secure placement, you're worried he'll end up having to be placed in a crisis situation, the safeguarding issues with the other family members and generally make a pain in the arse of yourself a bit. As for how much support he'll get (I work with adult LD so I'm in and out of a lot of different living projects) - could be a flat with carers on-site but own front door and lots of autonomy, could be more of a bedroom type arrangement, or shared lives might be the way forward - depends a bit on what they're funding and have available in your area really - but it sounds like it could be much less stressful for him if he's got his own flat where he isn't getting anxious about things being moved or not done how he needs them to be (he's clearly unhappy and stressed out as well as the rest of you) which would then reduce your stress and enable you all to rebuild the relationship as a family.

It sucks - I can understand and see both sides - I'm autistic and get incredibly anxious and irritable if we have visitors etc and stuff isn't where I want it to be - but I function at a level where I can manage that in an acceptable way - he clearly doesn't and he's stressed, siblings are stressed and you're in the middle trying to protect everyone.

Living first - then worry about occupation after that would be how I'd approach it.

Also depending on how your social services are functioning - make sure you ring them and ask for him to be allocated a social worker - you're much likely to get progress if you've got someone allocated (and you should do as the family are in crisis - I know you're chugging along but that's the term for it), rather than playing the roulette of who's on the duty rota that day - and there's a helluva wait to be allocated in my areas at the moment - so get that ball rolling.

I think the priority has to be dealing with the problem that's in front of you and getting him into assisted living.

It may or may not affect your son's internship. The internship may simply be a box-ticking programme for the company that's running it. Moving out of your house may or may not affect your son positively. The truth is, none of us can predict the future. You can't know how your son will change, who he'll meet, what he'll do, or where life will take him.

What you do know is that you and your other children are living in an abusive situation right now, and that's something you can act on. Whatever the future holds, you and your other children cannot continue living like this.

I think you need to prioritise the safety and wellbeing of everyone else in the house and prioritise being the squeaky wheel with SS to get the best supported accommodation for him asap. He might like to play down his issues but you absolutely must not, be full frank and don’t spare the full picture. If he can do the work at the same time great - in fact possible he feels more in control in a new environment and can do it more effectively.

Do you give him any money? If so what would happen if you said return the back door keys now or you’re calling a Locksmith to change them and you’ll be taking the cost out of his allowance?

Do you have somewhere safe at work you could keep spare front and back door keys once immediately resolved and whilst he still lives there? Or a trusted neighbour/friend? You don’t want to get held to ransom again on this over the next perceived issued that makes him try to confiscate the keys.