Parents of young adults with autism, how do you see things panning out in the home as they become older adults?

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DS is autistic and went to a specialise school for autism and then went to mainstream college which was hard. Very gifted academically so doing a levels but really struggles with executive functioning, behaviour, dysregulation, social interactions etc. has food issues, sensory problems, won’t eat or toilet out the house etc. won’t accept help from anyone either.

He has no idea what he’d want to do (which isn’t a surprise for any 17yo) but he won’t do anything unless he REALLY wants it so I can’t really see him applying for jobs at the level he is as it is all too overwhelming and I don’t think he’d manage to get and hold down a job anyway at the moment.

We just can’t really see a future beyond him living in his bedroom in our house as he gets older and probably getting more and more angry and bitter (which usually means we get blamed for doing something wrong).

I love him to pieces and want the world for him but we also have to be realistic about what is achievable with his needs and not putting too much pressure too soon. I also want my house back before he’s 30!

Just wondering for parents in similar situations, do you just accept they will likely be living with you long term and you get on with your life, go on holidays, work etc and they are just always there needing you financially and mentally? Do you get them on PIP and try and get them on the housing list even if they don’t want to? Do you make them apply for jobs they don’t want and won’t cope with just to be seen to be trying?

We’ve spent so long trying to navigate school that that adulthood is suddenly looming….

Similar here and frankly I'm terrified. I think our son is too.

He is not at home to any ideas of studying or apprenticeships so I fear that as soon as his A levels end he will enforce the end of his EHCP and will have nothing to do, no support, no ways forward.

He thinks he will walk into an unskilled job and just do it for the rest of his life.

In a similar situation though DC is at least working (part time retail job) but really struggling mentally and it seems to have sucked all remaining joy out of their life. Has no idea what they want to do with their life in the long term, no social life, masking all day at work is exhausting to them. It’s very easy to judge from the outside but with a ND young adult it can feel like you’re putting in 100x times the effort to make 1% of the progress.

I posted on that thread about my son
I have two in the situation you describe
I still hope the younger one will progress to independence
But the older one definitely won't .
We had a social worker for 5 years who was very helpful, but he wouldn't engage
We have a package of care in place through social services,for it he ever leaves home ,we did have it at home ..but again he wouldn't engage so it's on hold for now .
We tried getting him in to assisted living,that didn't go well
So we are leaving him be at home ,and I believe there is sheltered accommodation for over 50 s who need support, so maybe that might be an option,when he gets to that age .
We are kind of just taking it a day at a time

I totally agree. Ds may be highly gifted but he is never bored or under stimulated. He hates college because of the demands of masking and trying to fit in and has no desire to do that all day to work as he says himself that he will never manage it.

He seems to like his very small, narrow life of the odd tv programme, a bit of chess, reading about something or watching a YouTube on a topic of interest. When his life is that simple, he has capacity to get himself a drink or a snack, to shower, to put his clothes in the basket etc. But that version of life is not really acceptable with expectations or compatible with independent life.

When he has the demands of even a bit of socialising or college - he barely eats, can’t do anything for himself, is practically mute or violent to every demand. What kind of life is that.

Sorry OP just to answer your question… yes we did make them apply for jobs, I was terrified they would drift into joblessness after college and then be truly stuck in their bedroom. They are ‘coping’ in that they are getting up and going to work ok. But it’s made them so unhappy that I wonder sometimes if that was the right thing to do.

And plenty don't, despite their parents' best efforts.

Would he be able to do an online degree? Could he look for a remote career where he won’t have to socialise?
Are you able to give and leave him enough money to never work — and if not, is he able to understand that?

They look after themselves ‘not properly’ in my experience. They live independently but not to the standards that their parents would have wished. Lots of people are in that situation. If you have care needs under the Care Act you can apply for a package of support but LA budgets are very tight and it’s all means tested.

Honestly I don’t know and it’s getting pretty scary. My daughter is 23 and just finished a degree (she went 2 years later than her peers). She’s lived at home while she was doing it. In fairness most people commuted in as it’s so expensive to live in, but it meant she didn’t really make that many friends.

She’s now basically living in her room, applying for jobs that she’s not getting which is only making her mental health worse, We are encouraging her to volunteer or get out to clubs but I don’t hold out much hope. The last resort is to encourage her to do a Masters but away so she can gain more independence and maybe make some friends, but frankly I think we might just be back in the same position this time next year. I’m at a loss at what to do now.

I work in mental health and I encounter quite a few people who have a small life like that and they are OK by their own standards. One autistic guy who people assumed had significant LD because his job all his life was stacking supermarket trollies but in fact he had a 1st class degree but was not able to use it in a standard work environment. He didn’t live a conventional life but was happy enough pursuing special interests in coin collecting and trains.
When people say there isn’t enough help I don’t disagree but they rarely say what they think help should look like. An external person isn’t going to be any more successful than a persons family at making them do things they aren’t motivated for. The person needs to have some goals/ willingness to change to be supported with.

There are some good charities like the Princes Trust (Kings Trust now) and the Shaw Trust that have helped a lot of people and there are often more local charities that do the same.

He may have difficulty controlling his emotions but assuming he has capacity to understand the consequences of violence then he needs to control his violence. Don’t be manipulated by him. Explain that he is too old to be violent.

I think the "looking after themselves not properly" hits the nail on the head. He may be able to be independent. His life won't look like the life you want him to have. As long as he is safe you will likely have to accept that. He may be on benefits with no social life, happy watching his videos and playing chess, living in rented accommodation that isn't as nice as you would want for him. He may be able to manage like that. You might have to get your head round that, having helped him acquire what skills you can along the way. Natural consequences will have to be put in place. No laundry done, no clean clothes. No shopping done, no nice food. So you're not telling him what to do, just letting him feel the consequences of his actions

This makes me so sad. 'Looking after themselves not properly', breaks my heart that even with all of the prep and support parents can give, this is the likely best outcome. Awful.

When my DS did his masters there were many others that were autistic who felt the same as him, who he could live with. I am amazed at the independence he gained. I was concerned like so many on here. He has a very good job now in tech. Getting married soon.

Ds18, lives at home, he has his own room, he can make him self food despite it taking double the amount it needs too. He needs a lot of help with other things, he can’t go to work unless I find him a suitable online job because he has massive social anxiety, doesn’t really talk to many people; has one best friend from primary school and that’s it, went to college and literally made no new friends only talked to the course leader, who we’d met several times before actually starting the course. He’s also got limited vision and an array of other medical problems.

Nothing to add but solidarity. 16yr old DS here, nearly 17. Autism and ADHD. Unmedicated. He attends sixth form at specialist school to do A’levels but he is just attending and not doing anything. He won’t pass. He has one friend from primary but he is neurotypical so his life is so different from my sons now. Girls, part time job and socialising. My son’s world has become so narrow. Rather than expanding as he has got older it has become so small. He won’t be encouraged to participate in anything and has started to control his food intake. He has gone from having pride in his appearence to having none. I am sure he is depressed but he won’t engage with any services. I feel fearful for his future and sad for him. He has an EHCP but honestly it means nothing for him.

DS has level 2 ASD and some kind of as yet undiagnosed ID.

He walks to school everyday and comes home some after until I finish work.

He is entirely responsible for his dog, feeding and walking. He makes his own packed lunch each day sometimes the evening ahead. He makes dinner twice a week fr the family, makes the absolute best cups of tea in the house, puts away his own laundry, organises himself for the school day sorting uniform and clothes out in advance, he empties the dishwasher each morning. Honestly he is better than his siblings at some of these things but we have been teaching him life skills since he was very little.

He is only an early teen but I really hope someday he can get a job entirely based on routine. Based on my own career I have a few ideas.

He is obviously incredible at routine. I’m unwilling to write a job off for him.

I wonder if anyone might be interested in a support thread - it feels like there are quite a few of us on this journey and I find it hard to talk about with friends whose young adults are NT and thriving.

Despite best efforts and a lot of money we are at the living in bedroom situation and I can’t see how to change it though always live in hope.

I think k that is a great idea. it would be a long term project, because these things take years. but all the more reason why a support thread would be valuable. DS is only 17 a d I'm finding that lonely enough has all my friends are off on uni visits, but I suspect it"s going to get a lot lonelier.

Would love that!

I’d join a support thread - it is hard when the children of family and friends are getting on with life and my daughter is living a life she doesn’t want but can’t change

I’d love a support thread too.

I’d love a support thread! It’s so hard to find info about what might be possible