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.

This isn’t how autism works. Pushing some autistic people out their comfort zone can be catastrophic!
Your forgetting how some autistic people aren’t able to use the same social and emotional communication skills and non autistic people and many find it extremely difficult to begin or continue on with a conversation.

My DS for example gets mentally exhausted because as well as listening and responding to a person (a GP for example), he’s scripting every possible answer in his head at the same time! Although less so, he even scripts his conversations with me and DH.

There are just so many different presentations of autism, it’s impossible to suggest a one size fits all approach to solving difficulties.

So feeling comfortable in a different room in the house would be a realistic early goal. Does he have aTV and/or games console in his room? Something like that, or a second TV squeezed in somewhere else would be great if you can manage it. Personally I would not put it in your room if you can help it - ideally you two should be claiming the living room so it would be helpful if the second TV were in space that he is comfortable in.

When he says "get a room" I would see that as an opportunity to say no, this is our home and we are allowed to kiss each other. Gently, this IS our room whether you like it or not.

A friend of mine finds putting boring TV or things with sex scenes on tends to send her teens scuttling to bed!

With autism there is a difference between needing to be with a parent as the only way to feel safe, and doing it as a habit. You might need to tread very carefully but after 23 years of learning what works with him, you've got this.

There are some wonderful resources these days to help young people with autism increase their independence at young adulthood. The online group Asperger's Experts are brilliant. They do courses for parents and young people to help move beyond this stuck pre/ semi adult stage. All written by young men with autism. There is a book by the autistic writer Temple Grandin called the Loving Push about this too.
You could also look into your son getting a personal assistant he could get to know and form a bond with. Sometimes there is funding or could pay for a couple of hours a week private. They help navigate new tasks or just for company. Your son has the belief that there are only two safe humans in the world, you and his dad. So his world will be much brighter if some new people slowly join and he builds trust with them.
It is so easy to create a bubble around our autistic kids, because we know they are safe. It is for our sake as much as theirs. I went to a talk once and the first thing the guy said was the worst thing a parent can do is - avoidance. Avoid all the hard things. Exactly what I was doing. It doesn't keep them safe at all though because they aren't ready for anything then. It is false protection.
He is doing amazing learning to drive and work. It will be great for you all when a couple of new socialising skills are built in there and it opens up your world. It doesn't have to look like neurotypical socialising. It can be gradual, interest based, a new person to info dump with, whatever he might like. And hopefully you will get some time to yourself to be a wife/ lover again aswell as an amazing mum!

This is fairly commonplace among families like yours OP.
It’s great for both you as a couple and for DC that you want to help spend time away from
each other.

Some great advice on here. Just go at a pace that’s comfortable for you and him.

I haven’t read through but could you get him a PA who would take him out on weekends or evenings on social trips? I think you’d be able to get funding for this in some areas.

All the best, OP. I hope he surprises you with how well he does with this, as I’m sure he’s done on previous occasions.

@northernroots I understand completely as this could be our dc too! Not actually sitting between us (thank goodness) but if he hears us talking he'll magically appear or sometimes he hides behind the door but we are wise to that (plus he's not very good at it) so check if we are talking about something confidential!!

Edited to add. he does go out to various supported groups, but sometimes dh and I want or need to talk "now" not in 2 days time when he is next out. (And as he needs support we can't just go out and leave him spontaneously, it needs to be arranged with someone to look after him).

Good luck with it all! I can see he into all happened incrementally, but now that you've realised it, it is time to make changes.

Small ones at first. The calendar idea is a great one. Perhaps look up a board games group in your area and either you or your DH can attend with him until he gets more comfortable? He really needs some sort of social network - he us to learn how to make and keep friends.

Don't worry so much about his feelings of rejection. He has to understand that even those who love him don't want to spend all their time with him. If he doesn't learn this with you, how will he ever understand if a new friend doesn't wish to always spend time with him?

Hi Op
I see this situation as being in aspects very similar to what would happen 🤔 naturally if he was neuro typical,
all children teenagers young adults whether they are on the autustic spectrum or not, need to have healthy balance of the security reassurance of knowing that they are supported in a environment that gradually they can in stepping stones supports them to move away from their primary roles care giver, so in a way , teenager/ young adult have ideally best of worth worlds, a healthier balance, so has enough tension, (leverage) to be able to a bit /somewhat uncomfortable just enough ,to build up increase create, resilience through trial and error, within a robust support assisted environment,

You and your husband have done a steller good job of this, you need to frame this in your mind and to encourage your son that this as next stage ,

it's like an adventure

obviously i know he is going to need extra support to go through this transitional phrase of his life and yours ,

Not sure how things work in the UK, but is it possible to convert a garage into a small living space or build a granny flat in the garden, if you have a garage/garden? Or, purchase a small bedsit locally and have him pay a reasonable "rent" to you? He does need to start becoming more independent, and if he's working and driving I am not sure that assisted living type arrangements should be necessary (and they are probably in huge demand and very hard to get).

Surely he isn't going to learn how to cope if you never leave him alone.

I'd start asking him to move out of the way, on the sofa. Start leaving him for short times to walk to the pub with your dh for a quick drink etc, as I would a teenager. Or send him to the chippy on his own.

Start working regularly on his independence. You aren't helping him by allowing this to continue.

Sitting in between you on the sofa and having to talk around him is ridiculous ASD or not . By ridiculous I mean not sustainable. It must be so hard but in all honesty it's not doing him any favours for the future or his independence. I'd tell him you are working later so both won't be home till later, go out for tea and tell him when you get home.
At some point he will have to learn that couples need time for themselves and he'll have to get used to that. He sounds great having his own job etc, surely givenbhevis doing this he can learn new skills too.

I think everyone in this scenario needs to get comfortable with the fact that anxiety, discomfort and hurt feelings are a part of life and no growth is possible if you avoid experiencing difficult feel8ngs. You are reinforcing his anxiety by living artificially in an effort to accommodate it.

Is your son time orientated?

What I mean is that things happen at 8.05am etc

If so, then perhaps your first trip out with DH should be a walk around the block so that things like traffic jams or roadworks can't alter your time scale of your journey

If you go for a walk around the block or up and down the road or whatever and say you will be 10 or 20 mins then you could actually make it 10 or 20 mins for the first outing and then extend it by a few mins each time

Then he won't get stressed that you are late and have disappeared but will gently get used to you not being there gradually

Put the Mum & Dad walk into the calendar (which is a fabulous idea imho)

I agree that exploring supported living could be a good long term option. I don’t mean to be harsh and I am sure you have thought of this too but when you are elderly or no longer here what then? He sounds very capable and does have independence if he is working so could you expand on that? Of course your home is always open to him but you also deserve some independence of your own, as does he. Wishing you the best of luck xo

Could he go into adult supported living?

I assume the posters means because your son is an adult. 23 isn’t really young. You should be supporting him to become more independent. The longer this situation continues where you try not to upset him rather than having your life and supporting him with to deal with his emotions and don’t support him to become more independent, the harder it will become when he is older and has to make these changes after decades.

This was my first thought . It must be very hard OP but some sort of annex arrangement would be perfect

You say your ds doesn’t cope well in certain situations. How well are you coping with the current situation?

Your job as a parent is to help your child become as independent as possible. You are allowing your ds to control you so now it’s finding tools to help him adapt and maybe that won’t always be comfortable for anyone.

I do get it, the path of least resistance is the easiest and have a history of being controlled by my very very strong willed 15 yo dd, who struggles to empathise or see things from other’s perspective.

Sounds like a difficult situation Op. Good luck 🙂

Good morning OP,
Try implementing a couple of very minor changes to start things off - how about you or your DH always sit in the middle seat of the sofa first (obviously talk to DH about this plan, when your son is at work) so your son has to sit on the side of that parent.

Then try phrasing things in his favour. For example, if you and DH want to go out for a walk, tell your son “We are going out for 20 minutes to give you some time to yourself”.

I think small baby steps are the key here.

I think it is important that you continue to expect him to be growing and learning - as you acknowledge, he is in many ways like a younger teenager still, and just because he is over 18 doesn't mean he is an adult with no further capacity for learning! But if you continue to expect and model small changes and progressions towards more independence, that process in itself will be part of his familiar routine. Each day/week/month/whatever, what are we going to do new or different this time?

Perhaps you need to discuss with your husband what you'd like life to look like for him and you in 5 / 10 / many years time. Create a vision of something, and then think what the steps to get there might be. Then find the first tiny steps that you could actually be taking now.

Good luck!

It sounds like you may have to wean him off you a little. Start with really small things like, your dad and I need to chat so we are going for a walk. Back in 20 mins etc… from what you are saying, it looks like you have fallen into a pattern and of course, you dont want him to feel rejected. Someone once said to me, if you want something to be different you have to stop doing the same thing. Which i found really helpful.
You sound like a really lovely and caring Mum. I hope you can find a way.

I don't think you've mentioned if you have other children ... but for everyone's sake please take some of the advice to get your son used to being alone/living more independently. I am close to someone whose sibling is like your DS (though much older). Their parent passed away, and they have struggled with loneliness, not wanted to get out, and it's basically up to their sibling to do everything remotely tricky for them - which is difficult as the person with ASD was used to being the focus of their parent and getting their own way. It's sad for the person with ASD and a heavy burden for their sibling. If you take action now you are lessening the load on any other DC, and setting up your son for when you will no longer be around.

I don't think you necessarily need to look at assisted living yet given your age (though things can happen at any age ...) but I do think he needs some gentle scaffolding towards independence. You say he is like a teenager but actually he's behaving more like a much younger child, since most teens like to get away from their parents and love having their own room to escape to.

He needs to learn to be alone for periods of time with or without you being in the house. What does he have to entertain him in his own room? TV, computer? Getting him into online gaming could be a good way to get him to interact with others. Yes, I know it can become an addiction and unhealthy, but it is also a less threatening way of being alongside others doing something they enjoy.

What about a sport? I don't mean a team sport which he may find too daunting but running, cycling, hiking etc? If you could start him off, he might get interested in doing it alone.

I also think you need to explain that couples do need time alone together. You could plan short outings - walk in park, or cafe visit or whatever - where he knows how long you'll be and when you'll be back.

To be honest, its part of normal parenting to do / encourage these things, you're just starting at a much older age.

Good luck op.
Baby steps, absolutely no need to rush him into supported living at 23!
He is doing far better than some neurotypical 23 year olds with his job and driving.

Start with the immediate sofa issue by taking some time just the 2 of you and work towards social groups etc. You've just got into a habitual way of living and it needs a bit of adjustment.

I feel no need to rush my son towards supported living. But we're all reasonably happy with our set up. My son goes out several nights a week, has a job, goes out with us, but also friends, his brother, his grandparents and a befriender.
My mother also lives with me in an annexe,so maybe I'm more used to an extended family living setting. I anticipate my neurotypical dc living back with us after university for a little while or as long as they need. I have nearly 2 decades of working life ahead of me, I don't think it's unreasonable to think I can look after my son for a bit longer, I have friends the same age as me with children under 10! He might end up in supported living at some point, he might end up being with his brother or he might be able to live with me until I'm 95..like my grandad who lived independently until then. I have a nice dream of me and him in the same care home..there's one near us that has elderly clients and younger clients with ld and it works so well.