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

Op - you are so right that if this was a partner, this would be viewed as DV and you would be advised to LTB

this is your son, and it is DV - you are rightly scared of him -

ASD is very rigid / black and white -

I would suggest employ all the services you possible can to tackle the risks to the family -

ring SS duty desk
request TAF etc etc

take the emotion out of the decision making and employ the part of you that would advise others in this situation -

down track when he resides elsewhere- you can work on building the relationship and work with the rigid thinking to establish new rules -
you are welcome to come to dinner but the rule is no bossing people about -
no hands on other people
etc
etc

@QuaintBeaker there’s a long running thread with a mum in similar situation to you with controlling dd teen who was abusive to siblings, i think that escalated to extent where family couldn’t watch tv without the dd being there, weren’t allowed in the kitchen if she was was, and the tipping point was where she expected her parents to ban her ds from the dining table.. there’s a lot of good advice if I can find that thread I’ll link it.

Yes I have an older brother like yours. We all walked on eggshells and the family was run on his terms to keep him calm. Siblings all left asap and he stayed at home for decades making mum’s life more and more controlled. Social services did try him with Shared Lives, but after one day he was sent back home as he was too much to cope with and tried to control the carer. He’s in a home now and responds very well to the male carers there.

How old emotionally do you roughly estimate DS1 to be OP? Does he have a PDA profile as that massively changes how you challenge him, even at 21.

The priority needs to be him moving out unfortunately, there will be other internships and work opportunities in the future if he can get a handle on things but honestly he probably needs more scaffolding behind him before he can make a success of the internship if his level of needing to control is this heightened.
Initially a move will be a lot for him to deal with, but with his own space to keep exactly as he wants and no siblings to interfere and cause additional stimulation he may find himself settled and ready for the next stage (Internship).
What services have you got involved at the moment for looking at assisted living?

This is DV and you have a 12 year old who was put in a headlock and can’t play football in his own garden or watch TV. That is a child safeguarding issue. Make a safeguarding report to social care.

You can’t meet all of their needs.

it just isn’t possible.

in your shoes I would be focusing on getting him into assisted living - certainly living independently.

consider working around his constraints - you can download apps for phones that control smart tvs.

work out a way to get the back door key back and make a load of copies.

etc etc.

I’m sorry I know it’s hard.

So his dad gets to do nothing to support his child because of something that happened 8 years ago?! Does he even see DS1?

Is DS1 receptive to any kind of reasoning? Could you sit him down and tell him how his behaviour is scaring his siblings, and that there will be serious consequences if he continues? Just wondering, as I know autism affects people differently. My DS is autistic, but I can reason with him to an extent, although it would take longer to go in and he wouldn't exactly "care" as such, but he would probably change his behaviour because it was the "right" thing to do if that makes sense.

I agree with changing the back door locks and getting a key for everyone including him. That way he keeps his key safe and can lock the door if he wants to, but everyone else can also get in and out. Same for the remote, try and get another. His stays in his box so he knows where it is, everyone can use the other one.

Could DS21 live with his dad instead, while the younger children remain in their home with you? Or you need to prioritise independent living. Understand that he can't help being ND, but your other children are suffering in the meantime.

There tends to be a logical reason behind autistic thinking IME even if it's different to NT thinking. Personally I'd say work with it - none of these things feel at all insurmountable to me.

Firstly get a universal remote so that when DS has a fit about the other one not being in the box you have a spare. Alternatively get him his own tv for his birthday or give him the original/spare remote for his birthday if money is tight. A universal remote doesn't cost much on amazon IME.

Then get another couple of keys cut, if he has his own key he will probably feel much safer. Again this isn't a huge expense and give it too him as a birthday present, an odd present for an NT kid perhaps but might be perfect for autistic DS for whom safety is a huge thing.

Does the goal need to be in front of the patio doors? Does is matter if it's in another space in the garden even if the garden is small? I don't know what the issue is with not having it somewhere other than in front of the patio doors but maybe there is one.

I have a DS with ASD and I don't really see these as big issues at all. Why not say 'good thinking DS, if the ball hit the patio doors that could be bad - where do you think would be the safest place where it can still be used by other ds?'

Maybe I'm missing something here but to me these needs can be easily met.

Some people have taken the time to give me some really long and well thought out replies and I truly appreciate that.

I'm currently out at a skateboard lesson with ds4, so probably not replying for a bit.

But I've read everything and I'll respond properly once I'm home.

Thank you again.

P.s his supported internship is via a local special needs school and he was very fortunate to be offered one of only 10 spaces for the whole of our county. They're incredibly supportive so I would hate for it to go tits up because I think it would really really beneficial for him

Hate to say it but am in exactly the same position with my DD21. Would be happy to email if you wanted to PM me?

Am trying to work out, with GP support, private personal counselling, how to set up adult social care assessments, explore assisted living etc as I am not sure that she will make it back to uni for year 2 and even if by some miracle she does graduate - I don’t think she will ever work. Like your DS she is abusive, controlling and even if I just gently moan that she is still in bed ay 6pm (having gamed until 5am) I am told that I shouted at her, ruined her day and she is abusive, nasty and physical with every member of the family. My younger DS is going to uni, I hope, this Sept. He is also AuDHD but absolutely bloody lovely. My DH thinks he will never come home again as ‘home’ is a minefield. I barely sleep, in part due to her crashing around al night in the house, but also because I can’t bare the thought of waking up and it all starting all over again. I am not suicidal, but I really do wish it would stop, that I would not wake up tomorrow. I cry continually during the day. DD has sucked all the joy out of our lives, put a strain on my marriage, stolen the pleasure we might have had with our youngest.

I love her, but I don’t like who she is, who she has become, and stick by her simply because I can’t face the guilt of telling her to get out. It is absolutely a coercive controlling and abusive relationship. Fortunately my GP, when I approached her a month ago, completely agrees - so if you didn’t want to reach out to me personally I really WOULD recommend contacting:

1. a GP who knows you well
2. the NAS.org and arranging a call with a parent mentor (I spoke to a lovely single dad of 3 teens last month who was so so supportive and helped me feel less alone)
3. contact adult social care in your area to ask for an assessment to see if there are people who can help with thing like scaffolding him into independence
4. from (3) look at supported living options in your area.
5. Your local carers support group.

Nonetheless, if you would like to bounce around ideas, compare strategies and info and just have a space to rant to another person in the same shoes, do PM me.

I really don’t think your son sounds suitable for a Shared Lives placement with another family. He needs professional support with tight boundaries.

He needs to be moved out urgently.
Your other sons may be choosing to stay in order to protect you.
This will escalate, it always does. If he finds the internship stressful he may escalate then as well.

Honestly, is he ever going to be able to work? Internship may be a great opportunity for him, but is it really going to lead to work? I’d prioritise changing his living situation because that’s a real risk.

That internship sounds perfect. However, it could lead to an escalation in behaviour at home as he'll be confirming more in the day time. Masking can be incredibly difficult which can then lead to escalated behaviour in their safe space.

So important to get a plan in place prior to that starting.

What's going on for him that means he feels he has to control the behaviour of others? There'll be something.

First of all, you need to sit him down and explain that you understand that things can be trickier for him but anything that causes unsafe behaviour to himself or others will never be acceptable. Give him examples e.g. taking the door key leaves 1 less escape route in case of a fire, a headlock can cause a broken neck etc. Explain that you will phone the police if he is physically violent, if he won't give back the key then you'll change the lock and he won't be given a key etc. Tell him you will continue to do x, y, z to support him and if he's finding sibling behaviour tricky then he can write it down and you can talk it through with him and try to find a solution but that all of your children are equally important and his needs are important but not more important than his siblings.
Give a fresh start timescale to it. All of this starts now at x time.

First of all, you need to sit him down and explain that you understand that things can be trickier for him but anything that causes unsafe behaviour to himself or others will never be acceptable. Give him examples e.g. taking the door key leaves 1 less escape route in case of a fire, a headlock can cause a broken neck etc. Explain that you will phone the police if he is physically violent, if he won't give back the key then you'll change the lock and he won't be given a key etc. Tell him you will continue to do x, y, z to support him and if he's finding sibling behaviour tricky then he can write it down and you can talk it through with him and try to find a solution but that all of your children are equally important and his needs are important but not more important than his siblings.

I agree that those are all important things to help him understand. But the difficulty will be communicating them in a way that he can tolerate and absorb. Depending on how severely affected he is, he may be able to take those points in in small doses, with you picking just a couple of points each time, and choosing times when he is calm and relatively relaxed - and when you are calm too. My experience with my autistic son was that my own anxiety ramped up in parallel with his own, so that I brought an unhelpful emotional charge to these conversations.

I think those sorts of conversations will just be a holding space, though, and that supported living, should it ever become available, will be the longer-term solution.

On a positive note, it may be that this abusive phase will pass. My son was similar to what you describe in his teens. It felt so entrenched in him and so severe that I could not conceive of him growing up to be anything other than abusive. But he changed, very, very much. And by the time he was 19 or 20 I could see that he was gentle, empathic, considerate, to a fault. The abusive behaviour was a pathological response to overwhelming anxiety, and (for whatever reason - perhaps just increasing maturity) his responses to the same anxiety changed over time.

I know your son is older, but it wouldn't be surprising if this kind of maturity developed at uneven speeds.

Of course it may also be true that he does not move past his current behaviour. I just wanted to leave space to acknowledge that things may change.

Something else to bear in mind is that autistic traits and anxieties can predispose people to develop psychosis. This is what happened to my son, and it wrongfooted me completely. I didn't see it, because it shaded over so subtly from his autism, but it may well be that your ds is struggling with delusions that (eg) make the need for locked doors very much more pressing and frightening for him. My ds kept this sorts of fears utterly secret. It took an intervention from psychiatric professionals for us to begin to see things for what they had become.

Presumably because his wife is abusive!

I agree. You have other children to think about. He needs to move out, while you support from more of a distance. His behaviour is just not fair on the other children, or on you.

I personally don’t think it is useful (or accurate) to term relationships with autistic children - even if chronologically adult - as abusive or exhibiting coercive control. Just like it is not useful to define someone with dementia as abusive or controlling.

I have an abusive and controlling ex and also have 25 year old autistic DS living at home and also had an 82 year old mother with sudden onset dementia and the difference is clear. Learned and taught tactics are effective when dealing with overwhelm resulting from autism and dementia. You may as well piss in the wind when dealing with a cognitively able abuser.

These are not terms that should be used to describe the behaviour of people with neurological developmental delay or deficits or with disease. The carer is not a victim of abuse but the lack of support for carers is relevant. Often times there are tactics and techniques to address problematic behaviour which are not obvious but are effective. Unfortunately there is also no support unless and until in crisis.

Look up PEGs who support parents in this situation

https://www.pegsupport.co.uk/

Bless your heart- this all sounds horrendous but to be fair to you you sound like you’re an amazing Mum.

all things considered If it was me I’d be looking at him moving into his own home and building up some independence and giving you some respite from this all.

Supported living is the answer, then you can be a parent not his carer. My dsd is in supported living and it has worked out well

Personally, unless you have lived with a highly intelligent and manipulative person who is also on the spectrum, I don’t think you are in a position to comment as to whether it qualifies as ‘abuse’ or not.

If the person is deliberately and intentionally physically or psychologically harming another family member or their carer, they absolutely ARE being abusive. Whilst some profoundly autistic persons may also have learning difficulties which limit their understanding, many autistic people are academically capable and high functioning. Whilst they may lack empathy due to their autism, it does not preclude them from being abusive or coercively controlling - or give them a get out or invalidate the experience of those they target. Their victims.

@AnonyMumAuDHDi don’t wish to deny your experience. But by the same vein I could say that unless you have lived with a ‘real’ abuser and been trapped in that dynamic for decades it’s quite easy to mistake the behaviour of those with autism or dementia as abuse. Because it feels the same. The test is whether your actions or reactions have an effect. Support is effective with autism and dementia. It might only be in the short term but tactics and techniques are effective. Not so with a genuine abuser.

I don’t think you can unequivocally state that a person with autism - however high functioning - or a person with dementia is deliberately and intentionally harming the person they rely on rather than suffering overwhelm.

That’s horrendously offensive @PocketSand who are you to decide that someone who is being physically and verbally abused isn’t experiencing ‘real’abuse.

This is such victim blaming nonsense and offensive.

People with dementia can be abusive.