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.

OP, you sound like such a wonderful and supportive mum. Your son is so lucky to have someone like you as his mum. Many other posters have already mentioned putting things in place in the event that you can no longer are for him or be around - I won't add to that as I can imagine it must be such a difficult thing to get your head around and to get things in place xx

However, in terms of your and your DH's privacy/alone time - you three need to come up with a plan together. Your son should feel like he has some sort of say in the situation (with your guidance of course). For example
"DS, dad and I are going to watch a movie in bed together, what would you like to do on your own, I can help you set something up/think of something' , or 'DS, I found this film, I think you'd love, would you want to watch it while DH and I take a walk around the block?' Etc.

Even just moving certain activities to other places in the house will help. You mentioned your DS has a job, is there any way you and DH can do something when he's at work? Even if it means taking a bit of annual leave or starting/finishing late?

You need to come up with new routines for him.

One of those is mum and dad sit together on the sofa. Another could be mum and dad do their own thing on a Wednesday evening no compromises. He’ll get used to it, especially if you tell him way in advance so he can get used to the change. Tell him now and you can start after Xmas.

So I specifically work with adults with autism/ learning disabilities that are quite mild but still come with their own difficulties. Exactly how you describe you son. My job would be to help increase their independence and get them into work/ eduction and social activities. 9 times out of 10, 90% of the work is with the parents / carers to allow that independence to grow.
Give yourself a year time frame for example. Build up his independence in little steps- for example, have you and your husband nip to the shop leaving him in the house for 30 mins, build this up over time- lunch then dinner then eventually a night away. Get him to join a group, you can support this and then slowly break away as he becomes more comfortable there.
The steps need to be small but consistent and they most challenge a bit more each time. He will be anxious and so will you but it's the only way. You are not doing him any favours in the long run, and the longer you leave the worse it will get and more difficult.
Get in touch with MENCAP or similar organisations for help and advise.
Good luck OP

I'd probably try and get him used to being on his own a bit. Why don't you and your partner have the odd night away every so often. Even a hotel not too far away for the first few times.

Can I ask what job does your son have? I’d love my ASD son to get in to supportive employment.

Yes, he's a delivery drivers mate so he sits in the passenger seat most of the day and helps carry in deliveries for a white goods company.

He couldn’t go to the shop and yet he could take a driving test? I found that one of the most stressful things I’ve ever done. Maybe you’re underestimating him. You should slowly push him into independence, ask him to stop for a ping if milk on the way home etc. what will he do when you’re both gone? Help him to help himself.

I've never melted down behind the wheel and only twice, during lessons, locked down because there was a rule I didn't understand. I melt down and lock down in shops all the time. Shops are noisy, bright, and full of people. They play unnecessary music and have unnecessary visual clutter. My car is a much more comfortable environment, even in mid-Liverpool rush hour.

Just tell him you and DH need a night out Ali e and off you pop!

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 don't mean this to sound as mean as it probably does - but, so what? You've clearly spent his entire life doing ass he wants and you still are. 'Put out' suggests he'll grumble and pout - maybe you need to let him?

Obviously I don't know how his autism might affect him if you do this, but maybe like others suggest it's something you can build up to?

OP, gently, I think you have to be prepared for him to be upset, uncomfortable etc you need to make changes and that will inherently come with some negative emotion from your DS.

Do it gradually, one night a week etc.

I think a lot of posters need to understand what rejection sensitive dysphoria is and how it impacts people with autism.

It's not usually just a little bit of sadness, it can be extreme emotions and reactions and self harming behaviours like throwing their head back, thrashing, to self harm using instruments and feelings of worthlessness and humiliation.

Op certainly needs help establishing boundaries and should be able to spend time with her husband, but it's probably not got this far on without some pretty intense emotions meaning Op and her husband have had to walk on eggshells around the topic with DS.

It's not always as simple as just having a small butting of heads on a topic and who can enjoy going out when you have someone you love experiencing RSD as a result of your desire to be away from them. It can be really guilt tripping.

OP hasn't outrightly said what she thinks will happen other than he'll be a bit put out and not really explained what she means by that, but it seems like social and emotional cues are not his strong point and a 23 years old man is going to be a lot bigger and stronger than a child having a meltdown, so I can see Ops apprehension.

Visual cues, reminders, high praise, and high attention on some days around the planned activity where there'll be low attention given to him will help.

You're still doing it and doubling down even.

Just stop.

Thank you @Jimmyneutronsforehead I had not heard of rejection sensitive dysphoria and it's what we've been trying to help our son with for years..we've discussed it with professionals and they've never called it that either, but his reaction to perceived criticism is extreme. I used to come on here loads for advice when ds1 was little, I should probably keep asking!

Yes most teens do, however, ASD teens are very different.

Hi OP

I have an autistic 19 year old, and very much know how you feel!
Routines are so easily created (including where you sit and what happens when you go out) and it can be hard to change things up

Over the years I've got used to (over) explaining things and being fairly blunt and honest, because that's how he prefers to communicate.

So I would say to him maybe 'DS, tomorrow dad and I are going out for a meal just the 2 of us. It's nice for us to spend some time alone sometimes.
I'll leave you X to eat, and we will be back at Xpm. Just text me if you need anything'

Basically just set out clearly what is going to happen and what the different things that he'll need to be prepared for are etc.

Good luck with changing things up a bit! He will get used to things being a bit different sometimes :-)

Using slightly different language may help him- not “dad and I are going out for a coffee” , but “Dad and I are going on a date”. You might need to explain “Going on a date means just a couple- dad and I, If you come it won’t be a date” we will have some special time together later.. etc
Would that maybe work?

He'll never progress if he's never out of his comfort zone.
Gradually make changes like some OP's have suggested. Could be one change a month or every three months.

If he's capable of learning to drive, he's capable of much more bit needs your support to get there.

All kods go through being upset, it's part of life. So not doing things just because it would upset him is not helping him.

Your goal as a parent is to make your child as prepared for a life without you as possible.
As hard as it is, no one will love and care for your child once you're gone, as you do so arming him with the best social skills tools is what to focus on.

Good luck OP, it will take time bit be persistent.

My eldest is autistic. He’s now 45 but wasn’t diagnosed until he was 33. His dad died when he was 22 and 18 months later I remarried and moved to the US so I am not nearby. When his dad was alive we always said he was a “late developer” but I now realise that he had many more difficulties than I realised. He drives (but currently doesn’t have a car and can’t afford to buy one) and he has a great work ethic. Currently he’s a gardener, which suits him well, though in the past he has worked for an agency on building sites. He has a partner now, several years older than him, and has been much happier since then.

I have spent years pulling him out of various financial holes. I wish I had known the need to spend time teaching him in detail how to do things like track spending and pay bills. He gets into all sorts of trouble by just ignoring financial demands and has been in bailiff territory before now. My major recommendation for OP would be to teach her son how to run a household because eventually he will need that skill.