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.

It's about building relationships, which ASD children struggle with. Building good relationships with various people is key to socialisation. He won't have a 1 to 1 next year but a floating TA who will support him and a couple more children. He's only 8 and has shown school refusal a lot in the past. He's in a good place right now, and gaining some well needed confidence.

Great advice here

If he can drive and go to work then he is also capable of understanding you and dh going out one night alone

You are young at the moment but one day won't be Aldine so need to help assist ds to live alone /assisted living etx

An early night as you and dh are tired can also be done and get a tv in bedroom
And go and watch and snuggle

Also get a lock on bedroom door incase

In my area there is a service called community connectors you can access with a referral from a social worker. They will help try to set stuff up for disabled adults that don't do much socially.

We had teenagers. One who had autism.
They were told if we were having a date night that it meant us two. If we were in or out, they made themselves scarce.

We also gave them a 'bedtime' not a go to sleep time, but a clear off to your room time.

Just be clear about expectations. It's also fine to tell him you want a cuddle with Dh also.

I’d build it up slowly and get a TV in my room. I have a child who basically takes over the living room with SEN, I’ve gradually asked him to go up to his bedroom an hour earlier. He can still watch things on his laptop but it means I get the living room for a couple of hours.

This is similar to my in laws. My sister in law, likely with ASD, used to share a hotel room with her folks on holidays. Sat in the middle of them on the couch. What is different though and puzzles me here is that my in laws hated each other and both wanted SIL in the middle of them. I have a 12 year old who won’t live independently and an 18 year old who will, both with ASD but honestly we have far more freedom than you do even with the 12 year old.

How on Earth did it get to this stage? We often tell our 12 year old that it is our time together and have boundaries with all of our children including the two with ASD. You need to get to this quick smart or you too can have cost cutting hotel room sharing in your future. Obviously I’m joking but you absolutely need to put on your big girl pants and deal with the temporary discomfort of getting your son to understand your boundaries.

Have a look at the Prince’s Trust Explore programme if there’s one near you. My cousin was very similar to how you describe your son and this programme helped massively! She has since gone on to do another programme with Prince’s Trust and now works in M&S and can cope with being put in different locations within the store, doing different jobs etc. Might be worth a try?

My dad wasn't around forever. He died in his early 50s. It broke my relative with LDs who ended up dying in their 40s about 15 years later after a very long decline and intense depressive episodes.

Being a carer is tough and can be aging. People with LDs or development issues can often age prematurely too. My relative did move to a residential setting in their 20s. A lot of the residents often lost parents at a younger age than average. Sometimes it's that parents were older than average in the first place, sometimes the parents had aged prematurely through the toll of prolonged caring. Nothing is permanent but it's better when an adult with self-care difficulties has been facilitated to move away from home as a natural progession in life rather than a crisis reaction.

In OP's case, she needs to establish boundaries about adult/ romantic/ couple time and see how the skills to live away from home can be developed over time. It doesn't feel critical in 20s/40s when young adults often live at home, but if his comfort zone is never pushed beyond sitting between his parents all evening, one day you'll be looking at 40s/ 60s, 50s/70s when everything is much harder for all concerned and the risk of crises increases.

DS is autistic and reaching his teen years. He's "high functioning" and not socially motivated. Fortunately we do have space where we've set up a seperate living space and have a bit more breathing room from each other as he gets older. At present his independence skills are poorer than average but it's too early to tell how they will develop through the teen years and into early adulthood, but the way we're arranging space in the house is around the fact that we can't assume that he'll rush away to university and not be FT at home again, and he may need longer to launch into adulthood.

Has he got any interests OP, such as gaming online or board games or anything? I mention these as a family member similar sounding to your DS is now an active member of a board game meet up and loves it. You can get all sorts if groups including online where he could perhaps develop some friendships. Which means some free time for you.

Does he like gaming? He could have a set up in his room or another area of the house close to you, work in a gaming hour to his routine, you could have your time to your self while he's having his gaming hour? (Or any hobby) you could add him a timer and hype it up and he would know when it's time to chill by himself and when it's time up etc.. (our son is autistic so we do have experience in this situation) he will join in my phone conversations by hanging out the bedroom window while I'm on the phone in the kitchen downstairs! Or chat to me through the door while I'm in the toilet lol You could put a photo of you both next to his TV, or give him your jacket to wear to feel close to you

Contact adult social services. You aren’t helping him here. I know it’s difficult but this isn’t healthy.

I really do appreciate anything that helps.
Please can you say what you think it is I'm doing that's unhealthy?

Do you or his dad share any of his interests? I wonder if perhaps, rather than him tagging along with both of you, your son could do some things out of the house with one parent. Also, he needs to see you and your DH sometimes going out to do things on your own. Hopefully you can help him to develop his own interests which will be healthier for all of you

You’re not doing anything unhealthy! You sound like great parents. I have a pre teen with ASD and completely see a path when he doesn’t move out of home. People with ND children don’t understand that! He’s my baby and he has social anxiety - my priority is for him to feel safe, not for me to have ‘boundaries’. Sending hugs

Does he spend time alone with this stuff?

what does he do when you're both doing boring chores or go to the shops?

This is so tough op and I really feel for you. My 2 dc both have autism and are as different as could be.
my son is almost 21, he has a huge group of close friends and a part time job within his dad’s business but has hardly any life skills despite getting top marks in his GCSE’s and A levels. He went to a uni not even half an hour away but on a campus and lived in halls. He dropped out within 6 months as couldn’t cope.

I would feel extremely sad if he had no friends or social life and he has hobbies too. Is there anything your son is really interested in? My son said he doesn’t want a GF yet and I think he would struggle hugely in a relationship as he’s quite selfish I suppose.
It’s pretty unusual that your ds doesn’t really use his room apart from sleeping but that’s his choice but could you and DH decamp to your bedroom a few nights a week to watch TV and have some alone time? I worry so much about my ds in general but feel really lucky that he’s got his friends and interests.

my nearly 13 year old daughter will be like your son I think. She’s not interested in friends at all and has cut ties recently with her best friend since reception as she’s not bothered about going to sleepovers/shopping/make up etc and literally would spend every minute of the day at home with me if she could. She’s got tons of life skills and can cook and do many things that my son can’t.
There is no “one size fits all” approach to dealing with an autistic person and whilst we’re all offering advice you know your ds inside out and upside down and know what will work for you and him both.

my advice is to try a few strategies and see how he reacts to new situations. He may surprise you with his new found independence or it may only highlight where he needs support the most.

The thought of either of mine leaving home to go to supported living would be horrifying but as a mum I feel guilty over loads of things that are in my control and even thighs that aren’t!

Every day is a learning curve. It’s ok to put yourself first for a change though. Hugs to you.

Oops- my thighs are certainly out of control but I meant “things”

Yes. Bluntly, he's going to be on his own some day. Better to ease into supported living now.

I had a friend whose eldest sister was on the spectrum. The parents expected that the two neurotypical girls would look after the eldest...but the middle girl was diagnosed with terminal cancer and the youngest had another illness.

The father had died by then, so the mother finally decided to place the eldest into an assisted living facilty. I'm told that she's gloriously happy there.

This is a good idea

I don't think anything you do is unhealthy either. What is healthy is discussing the future, in small bite size chunks that all parties can cope with and facing the reality that you won't always be there to care for him. My biggest worry is that something could happen to me and then my son would be utterly lost and unable to cope. I feel I have had to be cruel to be kind, I have been in bits about his moving out, its an awful form of grief.

But, the reality is in twenty years time he will be in his forties and I will be in my seventies, its far easier for him to adjust now with me still able to visit regularly and actively support him rather than leaving it until later. My hand was forced a bit as there is only one of me, and I was at breaking point. That said, your son is much more able as he can be out and about working, my son can't manage that and will never manage to drive either.

I wish I was in a position to organise an annexe for him to live in and set up independent help to come in and help him with whatever he needs to be able to live independently but that's not an option for us.

He's an adult, and I can fully understand he's probably not as mature as other 23 year olds, but now might be the time to discuss with him what he thinks his future looks like and explain that spending some time alone throughout the week when not at work would help him get used to being more independent.

My dearest friend used to work in a day centre for adults with special needs. She always said that the most traumatised were the middle aged service users whose parents had died and they were facing all the grief trauma combined with having to leave their home and everything that was familiar.
I think this is what pp are meaning when they are saying what you are doing isn’t healthy and not in your sons best interests.
He needs to have little experiences of being uncomfortable so he learns it’s ok, the sky doesn’t fall in. We experience, we learn, we move on.
You sound like amazing, loving, patient parents, he’s very blessed to have you both.

I second this. Plus groups are really really important because unfortunately us parents don't live forever. I'd definitely start working on him getting used to a little independence. He might not like it now but it's so very important for him

For the best future for all three of you, you need to assert your independence and force his.

The three of you could attend a couple of small social groups until you decide which ones suit. Then all attend but sometimes just your husband and son until sometimes your husband nips out and comes back to pick him up etc.

Slowly get him used to a trusted group. A church with people the same age, a Chess club, Painting group - look into all sorts until it suits.

At home kit out your bedroom as more of a sanctury where you can go to relax on your own. Take a regular Romantic Evening Walk (call it so) with your spouse that your son will respect as private.

Buy your son a new chair for his Christmas present. One with privacy wings so your sofa has a buffer. Also give him ear buds, a Karaoke set, talking books etc.

Can you set up a craft/model/puzzle table where your son enjoys spending some time away from the TV. Can another family member invite son over for dinner once a fortnight? Set up alternatives.

Be more aware of the number of times son does his own thing. It is healthier for him to accompany you 80% of the time rather than 99%. He needs to become happily independent.

Well he's only ever going to be comfortable with you unless he's forced out of his comfort zone. You're letting this happen, set some boundaries, you're not responsible for his social life 🤷‍♀️

Hi @northernroots my ds is 18 and very similar to your son but doesn’t work and doesn’t drive. I have to drive him to get food every single day as part of his main calories and it’s draining - always having that same me/him routine but if I don’t do it, it means he won’t have those extra calories (he has ARFID).

He doesn’t have any real life friends but does engages in a large community on multiple discord servers. The difference from your son, is my DS loves being on his own without us. So if we say we’re going out for a meal, he feels calm and enjoys that time in the house alone. For your DS though, it’s obvious he’ll get super anxious if you leave without him and pop off for dinner.

As someone else said, social stories might help with that. Just really small steps at a time and I wouldn’t start with a 2 hour dinner out. I’d literally start with a little walk locally and call him after 5 mins to ask how he’s doing etc.

I try to subtly ask my DS ‘what would you do if….’ And then give him a little scenario. He’s always got the right answer because he hyper focusses on safety and all sorts so he’s ok, but would that sort of thing work with your DS?

Im always bursting into tears (not in front of him) worrying about his further when we are no longer here. It’s heartbreaking. He has a sister and relatives but he doesn’t really want to see them or know what to say to them due to high social anxiety -except for his sister.