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

just to give a bit of a window into the ASD brain, things like the remote not being returned to the spot are infuriating. We have this at our home. It drives me crazy that my family can’t just put it in the right place.

the difference is that I don’t get violent or even berate anyone. I know this is my problem, not theirs. At most, I use humor to complain a bit or play the mom card and make them come search for it because it is lost again. In one room, I put it on a leash because there was a practical way to do that.

I am able to do this now in my 50s, because I have level 1 ASD and because I have years of practice. My early years living with flatmates because I couldn’t afford anything else, were never violent or aggressive, but I was not popular. I was not a good person to share space with.

your son needs to control his own space. There is no excuse for his behavior. At the same time, it is also true that what he is experiencing living in your home feels like absolute chaos.

If you absolutely can’t get him into his own home, then you need to rethink how your house runs. We run ours for ASD brains. The overhead lighting is rarely used and people ask permission before turning it on. We have lots of lamps. We still have things like the remote because while we are all ND, we all have our own ways of wanting to do things.
What I do is sit down and look for solutions. Things like using a leash. Put the key on a hook or install an electronic lock. Establish routines and even create charts if that helps people follow them.

Some of us have lived with both. I am sorry, but you are wrong and you ARE minimising the experiences of parents and carers like us.

And as both an AUDHD person myself, as well as the parent to two young people, I absolutely CAN unequivocally state that my child knows what she is doing. The psychiatrists who know her and GP agree.

you absolutely can’t get him into his own home, then you need to rethink how your house runs
@Ponderingwindow and if the only way he
accepts this is by the ds1 controlling everything and everyone?
how can this be healthy or safe? A pp has already implied his physical and verbal abuse towards his mum and decade younger sibling is nothing to worry about

Sorry - not intending to be confrontational - but when people try to argue that ‘they cannot help it’ it creates a narrative where parents are to blame, or inept, that they must put up with it.

This is not helpful. It disempowers parents to speak up - so they end up on anonymous forums like this desperate for help - it puts the onus on the parents to ‘fix it’ either by further adapting their own behaviours, subordinating their own needs and those of their partners and other children, and suffering in silence because people will judge them and police their language over it.

Autism is as varied and diverse as neurotypicality. It can impact empathy, it can impact theory of mind, it can mean that an individual autistic person experiencing distress can become unable to empathise with family members or consider the consequences of their actions and behaviours. But quite often it is simply an autistic person trying to bend the people and environment around them to suit their needs. They can be very deliberately manipulative and coercive, just like neurotypical people and many young children can be too.

When the physical wellbeing of family members, when the mental health of carers and others is being significantly impacted that siblings leave the family home, that marriages fail, then the needs of the autistic person need to be balanced against other family members. And that can mean removing them from the home and looking to delegate their ongoing care/management/supervision to other people. Parents need to be empowered to do this when they reach this threshold, not made to feel inadequate and failures. The narrative needs to change to enable them to ask for help as soon as they recognise that they need it.

The ‘they cannot help it’ narrative undermines this and puts entire families at risk.

I agree with that, @AnonyMumAuDHD . The "they cannot help it" narrative is way too simplistic and ignores the very wide diversity of people with autism -- diversity in the nature of their autism, its severity, and the manner in which intersects with their whole personality (which is more than just their autism).

There absolutely are a lot of very severely disabled people with autism who clearly 'cannot help it'. And there are people with autism who are as much in control of their abusive behaviours as people who are both abusive and neurotypical. And then there are a host of people in between whose autism genuinely makes it very much harder for them to behave acceptably, but who are nonetheless responsible for their actions to a significant degree.

Don't forget that for every person who behaves abusively there are going to be a range of psychological causes that contribute to their behaviour. Those don't remove responsibility, but they do help to explain the abuse, just as autism does in some cases.

It is part of the horror of parenting a child with moderately severe autism and extremely challenging behaviours that you have to surf between understanding causes and upholding personal responsibility (whilst simultaneously feeling wracked with guilt about your own responsibility for your reactions and parenting decisions.)

Thank you. I'm sorry you're also in a similar position

I'm so sorry you went through that. It's so hard isn't it?
I just keep thinking that he's going to feel like I've rejected him and that makes me feel sick.
But i have other children and their health to think about too.

Thank you for such a thoughtful reply.

We have a 'safety plan' which involves me not leaving ds4 alone with ds1. The headlock incident happened when I stupidly had my headphones in and didn't hear the initial argument and only saw when it had escalated

The current set up is that ds2 has a garden room that's his bedroom. Ds4 has a room that he shares with ds3 when he's here visiting- he has his pc in there and a lock on the door so he has somewhere safe to go.

My room also has a lock and the kids know they can use that space if they need/want to.

I actually like the maslows suggestion and the law bit. I think that could make sense to him because it's very much a right and wrong type thing.

OP I just want to send support. Let go of pleasing everyone. This is impossible to do when you have a huge diversity of needs unless you have a massive budget and unlimited space. You are also important in all this. You will get ill with the stress of this carries on and then all of the kids are sunk. So focus on finding your DS help and a place to live.
Really hope assisted living comes up with something helpful for him soon. Your other kids might be very worried about you. There will be multiple perspectives on this and it’s important to change the set up as soon as possible so that you can have good relationships with all your kids. Wishing you all the best, it’s a very hard road. Can you get their dad involved? It’s really not fair this is all on you.

Thanks so much for responding.

You are absolutely correct that this is how his anxiety manifests. We see escalations when things are changing or difficult. When things are on a more even keel he can really be lovely. But I do know that the times when he is not lovely are damaging to the rest of the family and it needs to change.

I will definitely reach out to adult services again. Thank you for the keywords! That's really helpful.
I've done a bit of research and I can see that there are places fairly local to us that offer flats which i definitely think would be better for him than a room in a shared house. Not sure what availability or waiting lists are like though! But I'll push for referrals to be made.

I'm also autistic, so like you I can kind of see if from both sides although I'm a massive people pleaser so I would not ever have kicked off the way he does. But I absolutely get the anxiety

Emotionally i would say he's around 10-12 maybe?
Intellectually he's so much higher. And that makes things difficult because people expect a lot from him.

He's had an initial appt with his caseworker from lifelong services and I've highlighted that i want to look into supported living. No idea on what timescales are like though

Update: i got the key back. Turned the Internet off and told him it would go back on when the key was back.
This resulted in hours of stand off, him messaging my mum about it and eventually making her cry, lots of insisting that I wouldn't keep my end of the bargain and that I should turn the Internet back on before he gave the key back.
But I stuck to it and got it back.

Copies are made. Everyone has one with their initial on it.

Just to join in with the debate on "they can't help it" i think it's really nuanced.

Ds1 absolutely does know that how he is behaving isn't ok. If i talk to him at calm times he knows that, although he will often try to defend his position on why he needs to control things etc.
BUT when he becomes dysregulated he is unable to be logical and rational. When he is in that state he needs to fix whatever is wrong and i genuinely don't think he is able to control himself fully at those times.

This is what makes it so hard.
Ultimately he needs space and my other children need a safe home by it still feels awful knowing I'm pushing him out

@QuaintBeaker your in an impossible situation with very limited support but please don't frame it as your pushing him out because you aren't. You have recognised, and he probably has, that his needs aren't well managed at home and he would benefit from assisted living where he can be more in control of his environment, and in turn your other children can enjoy seeing their brother and be in a safe and calm environment at home. His needs cannot trump their safety and he probably does understand that.
Assisted living isn't pushing him out, it's moving on to the next stage in life as he would do as a NT person (it just looks different).

@iknowthatfeeling thank you. It does help a bit to reframe it like that

@QuaintBeaker your helping him get what he needs, as well as your other children. You are doing an amazing job of advocating for him and still doing what's best for him and your other children!

I'm not sure what's available at his age, but has he been through any speech and language therapy? He may be too old to access what they offer but they do a lot around communication through behaviour not just speech. You'd likely have to go private to find it so might not be an option anyway. He should still be entitled to support at his age but I know that's not always the reality.

Once he's got over the hump of the change, he might be happy in supported accommodation. Maybe you can visualise that. Especially as it will probably take a while to sort out. I can't see how it could get sorted by September.

Do you think he's worried about the internship?

Top work with the key!

I have a 13 year old AuDHD girl (PDA profile) and my goodness I have had to do some odd things over the years to manage and she can also be very controlling when anxious (although with age she is developing more skills). I sometimes feel like DH and I live in a parallel world to most people we know.

If he is so concerned about danger, insist he returns the door key. If thee is a house fire you cannot escape from one of your two doors.

Sorry missed key success.

Yeah - I have two autistic kids - one who is Miss People Pleaser extraordinaire and the other who becomes anxious, escalates, trys to control as a way of managing that anxiety - so it's really a difficult combo to manage.

I did run into one parent of a young adult I'd worked with a couple of years ago again relatively recently - this individual's now moved into supported living and mum says the relationship within the family has really improved with that little bit of distance.

Is he likely to respond to something like a social story? Sometimes you can have the rational discussion till the cows come home, but putting it onto a bit of paper makes it more concrete and less likely to be something he'll feel he's got to argue against? You can get some basic ones online, or colleagues have had some success getting AI to generate them - or if you get stuck sling me a message and I'll give you at least an idea of the basic text to use (I'm a SALT so I spend half my life writing them). If someone is rigid in a bit of a "jobsworthy" type way - sometimes they'll agree with printed text a lot more than with all the discussions in the world!

Sounds really tough but I’m glad you got it back. Too much of a fire hazard otherwise.

You can buy TV remotes on Amazon.

What you could do immediately:

Get another remote for the TV and he can keep and govern the one that lives in its box. If it’s a smart TV, you can use your phone as a remote in some cases.

Change the lock for the back door and have multiple spares.

Not sure about the rest, but you can do the above quite easily and will help resolve two issues, especially with regards to the TV remote.

Really relate to the feel of sometimes living in a parallel world to other people. . just the isolation of this whole thing.

I can only suggest OP that whatever the stressors are in the environment that are causing the dysregulation for your DS, that for everyone’s sake, to remove them as best as you possibly can. That can include him living somewhere else as a good thing for him.

OP your DS must be suffering a lot of stress if he’s behaving like this, so removing him from the home into a supported place of his own, could be a real blessing for him. And for you and the other kids. You are allowed to be happy and relaxed. Take care of yourself as best you can in all this.

Get him the supported living.
Asap.
Can be near you and you can visit every other day.or every day
You wont know until you try
He may surprise you
You have to put other dc first they cannot move out Can they?

Just to say, you sound like an amazing mum.
I have no lived experience of autism but you seem wonderful.
I'm sorry your family is going through this and I wanted to send you a handhold and big hugs x