To feel we get no privacy from adult dc

[northernroots]

We have an ASD son who is 23 and is unlikely to ever move out he's even said so and that's fine with us.
He lives quite independently in that he works, drives and can cook and clean but he doesn't cope well on his own and is mentally more like a teenager.

He has no friends and never goes out except to work when we're all out.
He sits with us all evening on the sofa between us in the middle so if dh and I want to chat it's always around him or he answers for us.

He is always listening to every conversation and chipping in and he doesn't go to bed until we do.
If we go out he comes along and 99% of the time it's absolutely fine, we both know and accept he's only got us and doesn't go out alone.
I just feel frustrated that we have no privacy, no time together to actually be a married couple or a conversation or even a snuggle on the sofa.

He obviously does have his own bedroom but he doesn't go in it unless it's bedtime, he just never has.
He's very oblivious to this of course and just saying go and be in your bedroom would not make sense to him and he'd be very put out.

I also wanted to add that supported living is not really available for hfa people with jobs and able to do housework or drive. In my area they'd possibly be given direct payments to pay for a personal assistant to help them with life skills sort of stuff if they were struggling.
One of my jobs is as a self employed pa and I help support people in their own homes with anything like cleaning, healthy eating, paying bills, socialising, personal care.

If you start thinking about when you're getting old, if you don't change anything now nothing will be different then. And you'll be worrying about dying and leaving him (sorry) so it's better to make changes now, that def will make him uncomfortable, but will give everyone a better quality of life long term.

I also have a son with asd, hes only 11 though. What about a flat of his own with your support si he can try and make hus own way in the wotld.

There's support and there's coddling.

You're coddling him.

If he can drive which is everything unpredictable and work a job, then he's capable of doing more for himself besides sitting between you and your H on the sofa every evening.

He's 23, not 5.

You have to ask yourself why you've let this go on for so long and what benefit to you him doing this has because their is some benefit or you wouldn't be doing it.

Is he really incapable is making a few small changes to be more independent or have you just not tried for an easy life and there is a part of his dependency that suits you?

Our 16yo has ASD and could be like this, but one of the good things about ASD is that it really helps to be direct with him and not dwell in that uncomfortable space of hinting etc. I would just tell him that me and his dad are a married couple and need time alone so he needs to go and do his gaming or whatever while we go out or have time in the house without him. He may well have a 'eww mum and dad kissing' reaction, but that's not unhelpful if it makes he want to not be around for it. What you and DH want is totally reasonable and you don't need to worry so much about upsetting him with it. It needs to be normalised in your home so it's not a big deal and not about him. Be direct, clear and logical about it, and it should be better for everyone.

This is super harsh on the @northernroots OP.
My own DS can speak and write Japanese and play grade 8 piano but it takes him 15 mins to wash up one knife and he cannot speak to his grandparents on the phone! With ASD nothing is as straight forward as ‘just do this’ or ‘just say this’.

Every single autistic person is different & with a massive sliding scale of need.
What’s easy for one person could be extremely difficult for another.

What someone from a non-autistic background might call ‘coddling’, a parent of someone with ASD would see it as reducing their anxiety and making their environment support their need. From the outside, this might seem as though they’re making a rod for their back but to us, it’s reducing the accompanying anxiety in order for them to complete other daily needs. So if for example @northernroots was to make DS sit somewhere else or be left alone overnight, he might then be so super stressed, he wouldn’t make it into work the following day. It really is a difficult balance of supporting for whatever possible needs might crop up hours or days later.

And whilst very small steps towards independence is the ideal scenario, it’s much easier said than done and it’s more often 3 steps forward and 7 back.
it truly is exhausting living like this but that’s what many of our lives as autistic parents are like.

Why are you assuming I'm non autistic?

I’m really not assuming you’re non autistic. I wrote my reply without referring to you specifically.

@northernroots it might be worth reposting this in ‘SN teens and young adults’ for a more realistic/supportive set of replies.

Soemtimes setting boundaries isn't what another person will be happy about - but - if you give your son 80 per cent of your time at home I think you need to just say very clearly - me and your dad need time just us - and decide what you are prepared to set as a boundary.

So - you say, me and your dad have decided to go out once a week just us - if you really really can't face saying that to him - then that's your decision. But I think you can own it, own the need for time on your own.

Carers need time off! You will end up burning out in life if you can't ever say no to your son. He is atusitic so presumably you will just need to spell it out really clearly.

It's really a tough one OP.

I've made the same mistake with our son,he's never worked and has no life outside our home.

You need to be very direct and clear with him.

"Son, sometimes couples just need some privacy to do things alone. That doesn't mean we don't like your company. I don't know if this is something you've noticed, but most adults your age don't spend all their time with their parents. Their parents love them just as much as we love you, but it's good for adults to do things independently sometimes and it's as important for you as it is for us."

I think you could also try saying "Son, if you had a girlfriend, would you want me or your dad sitting on the sofa between you and her every night?" because I'm guessing the answer would be no. That might help him to understand why you need some privacy.

I agree with the posters saying it would be better for him, and you, if you ease him into supported living. My brother is on the spectrum, 43 and still living with my parents. He has no hobbies, no friends and no life. My mother is using him for emotional incest purposes, and cannot be persuaded that it's in his best interests to help him to live independently. I've cut myself off from my family for many reasons, but one of those reasons was to reinforce the point that I will not ever be stepping into my mother's shoes. It hasn't made any difference. My parents are around 80, so this cannot carry on for much longer and my brother, sadly, will one day be dealing with the grief of losing his last parent and his home in one go.

@ManateeFair this is a really good example.

I’d be saying, “That’s a great idea son!”

And then take your husband’s hand and just go upstairs together.

Simple 👍

Think @ManateeFair has nailed it. Sometimes in our house things need to be spelt out to be understood.

Having read through your follow-up posts, it sounds like, long term, it'll be an assisted living type place for him.

Just out of interest... his driving... How would he cope if he - heaven forbid - had an accident and had to deal with the various roadside dealings?

So fire up Netflix, put out a pizza or something and tell him you'll be back later and not to wait up.

If he does fret then like a child, let him fret and get over it.

Then do it again pretty soon, even if only to the local pub for a few hours.

Keep doing it. He'll soon get the message that its ok, you're going out and he trusts you will be back.

And I guess he did once have a bedtime ? So send him to bed to give yourself time.

Your son’s interests are exactly the same as my ASD son!! Not in the North West are you 😃

Just want to start by saying you and your DH sound like fantastic, caring parents @northernroots . I come from a mental health rather than an ASD background, but I think there are similarities, including how important it is to make gradual changes rather than big, sudden ones that your DS might find too overwhelming. Could you try and make your time with your DH something that sounds like a positive to your son? Like he gets in his favourite takeaway, spends some time on his interests, even just watching something on Netflix that only he would be interested in?

What's going to happen to him when you're not here anymore?

I could have written this. No advice, but lots of understanding and sympathy 😩

mine will go to his room, but keeps his door open so as not to miss anything in the house and moves around it in silence, appearing like a ninja whenever we start having a private conversation 😔

it’s frustrating, and as much as we try to hint to him to allow some space or even out right tell him, he has no comprehension.

But it was since you quoted my post for your reply. Own it, instead of attempting to gaslight me.

I may be ND, but I'm not stupid but then again maybe you're used to speaking to us like we are.

Set some boundaries now. What happens if he survives you? Your job as a parent is to give your children the ability to survive without you! He needs independence. So do you.

I think you actually misunderstood my use of ‘your’ word ‘coddling’. I should have written ‘what anyone from a non-autistic background might call ‘coddling’…’.

I simply used the word you had used but my comment wasn’t meaning ‘you’.

it meant what anyone might call coddling.

Anyway, I didn’t even think about whether you were ND or NT - I was just saying how your response was assuming because the OP’s DS could do things like clean, work and drive, meant he could do other things. Which it doesn’t necessarily mean. That’s all I was pointing out.

I used the word coddling because that’s what many people might think.
It upset me that you thought I would speak to NT (or anyone) as though they were stupid! My DS is autistic! And please don’t say I was gaslighting you.

I obviously was not.