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….

You need to build skills slowly and firmly. Rome wasn’t built in a day. Small jobs lead to bigger jobs. Lots of older people I have met with autism have led amazing lives but some younger people have much worse outcomes because the expectations are so low. So try to find what works and accept what doesn’t. Okay college was a struggle but jobs with more structure might not be.

This is based on the premise though that we have the ability to help him build skills slowly and firmly. We can’t. He won’t let anyone help him. He has to do this for himself now or he can become violent if we try to help in any way.

One of the things that got me thinking about it was all the posts about the NEETS data and all the parents of NT, bright, enthusiastic young people with drive and determination and how lots of them can’t get any jobs. What hope is there really for people with significant additional needs? And what happens to them then? Will they all be living at home? Will there be some sort of provision for them? (Unlikely!!)

My dc went away to uni.

i did wonder how the hell she would manage and expected her back within the month but she didn’t.

on her course there were multiple people with autism (physics) sone of whom lived at home.

He should definitely claim pip, as that will help him whether or not he works or is in education, and whether or not he moves out.

I don't have any wisdom for you op, but just solidarity. My DC is a few years younger, but at the moment I cannot see a future for him.
Right now I'm looking at options - supported internships, supported living, specialist further ed colleges etc, as well as trying to instill life skills as best I can.
It is a HUGE worry though. Right now my best plan is to live forever!

Both of mine have similar profile and history. Both have managed university. ds1 is now working. ds2 has had an internship whilst doing his course. We have been surprised how much things have improved, particularly for ds2 who was housebound at 16 but has managed living away at a university for three years. Don't assume how he is now will be how he always is.

I’m a parent of two autistic teens. I also grew up with an autistic cousin. I do worry about my youngest, but I’ve learned a lot can change.

When my cousin left school at 16, after 5 years of struggle, he was unemployable and rarely left the house.

Eventually after a lot of volunteering within areas he learned he enjoyed, at 27 he got a full time job and has been in it for 10 years now. He also has a good social life and is a member of a club where he gets to indulge in his hobby. He does still live with his mum, but it works for them.

I’ll never give up on supporting mine into achieving more throughout life, regardless of what hurdles stand in the way.

I sometimes worry though that it's so hard looking after them now, that I will die too early, and then what will happen?

Plenty manage at uni when parents have installed skills throughout their lives.

I’m preparing to send my ASD 17yo to university. While she has challenges, she will be able to integrate into society and be independent.

if you son managed college, he can very likely find some employment. I think with ASD teenagers, we have to plan to scaffold them more and ease the transition differently. It can take a more hands on approach.

If he is like my dd, if you give him orders, he will refuse on principle. I could tell her to eat chocolate while petting a fluffy cat and she would refuse. Instead, I sit down and explain. I explain the why of everything. Literally recently I did have to explain this exact scenario because she was getting stressed about an exam and I knew she was likely to trigger a migraine. So I explained why I wanted her to do each of these actions and how they would help her body and ultimately help her perform on the exam. Most parents can say, hey, maybe take a break from studying. ASD parents have to spend 20 minutes calmly explaining why they need to take a break and exactly how to do so.

so for finding a life path, you are going to need to slow walk him through possible steps. Give him choices along the way. He is in control, but he needs the steps broken down in ridiculous detail. It may not work. Some ASD individuals remain unemployed, but it is worth the effort to try.

I know this is harsh and might not go down well but what if they didn’t have the option of living with you and being looked after by you (who won’t be there forever)?

For the most severely affected there are supported placements but for people who are able to function in some way then I’m not sure it’s doing them a favour long term to just continue open ended unconditional financial support and accommodation frequently with no expectation even of contributing to chores or cooking at home. No one apart from their mum will be doing that so they will need to learn to manage at some point even if the standards might not be what you would ideally want.

I think you need to start saying now that post 18 you will be expecting a financial contribution from their income or benefits and you expect some contribution to cooking and cleaning now and will be withdrawing your support in these areas to provide some incentive.

Have they got siblings?

independence, independence, independence.

It is so important. My husband has a sibling with diagnosed MH issues (and likely some that were not diagnosed 40 ish years ago). She never left home, never received help, but did work - seemingly with difficulty. As she got older she is really intolerant of others and isolates herself and PIL, to the point I think there was such control over a medical issue it crossed the line to elder abuse and I risked wrath to get a Dr to help. PIL just accept the control over everything (who comes in the house, when they see GC, how the wider family lives their lives, etc) and everyone has to fit in (difficult as so many triggers, some unknown) or be blamed for rapid meltdowns. She is also malicious beyond any MH issues/ND and does not tolerate children (to the point of endangering and frightening them). But she is too independent (and intolerant) for assisted living

As PIL reach the end there does not seem to be any plan. What on earth will happen? How can they not see this? With hindsight they should have made a serious plan two decades ago, with independence at the front.

Sorry to sound grim. A decade ago I thought PIL were wonderfully caring and supportive. Now it is clearly a disaster. Really difficult for siblings to pick up the pieces, particularly if they are at a point in life where they have children at home.

lol at telling them you want support with cooking and cleaning.

my mum also felt it did disabled teens no favours to pander to them and suggested throwing my autistic also physically disabled and wheelchair using daughter out of the house onto the streets.

now she might have been happy to see her granddaughter on the streets (at 16, not even 18) but I wasn’t.

in all seriousness, autism can be very very serious and if you tried to throw a disabled kid onto the streets I can imagine SS having something to say about it especially if they are under 18.

our hospital has a scheme called project search which is linked to the local college. Young adults like your son basically spend a year working in different areas and usually find employment with us by the end. But like you say, your ds needs to want to do it. With autism it’s often black and white so maybe some tough love is needed to set out expectations.

I did not say put them on the streets at 18 that’s your reading of it and not what I said
You can ask them to do cooking and cleaning and if they don’t do it then the natural consequences are they live in squalor and have no clean clothes. If you make it easy and default to do nothing and get looked after that’s what will happen and they will not have those skills when the time comes that you can no longer do it. In my job I see these situations all the time and social care and mental health services will not just take over so better to aim for independence whilst they are young even if it takes longer.

I get the life skills bit, and I do agree (though from what the op has said, it is nearly impossible in her situation), but what about the bigger picture? What happens to those who are not disabled enough to qualify for care, but too disabled to get a job or look after themselves properly?

Does he have an ehcp? It can cover thing like independence skills and if he doesnt do a degree it can be used to access supported apprentiships/ internshipd and you might find you have a scheme like employability in your area they can offer mentoring so its not all you nagging or trying to find what he would do.

What does he do for pleasure ' what made him pick the subjects he studied (maybe being an academic is his path)

This is more what I mean. Obviously no idea how things will turn out for Ds and we are trying as hard as we can but I am wondering what happens to these sort of kids in the future who are bright and seemingly ‘able enough’ on paper / in the eyes of others but in reality can’t get a job, can’t hold a job down and / or can’t manage day to day living without significant support but don’t qualify for anything.

Yes, he has an EHCP but refuses to engage with it or the support from college. TBH he barely attends college as it’s so hard but they don’t seem to care much. He gets by as he has a genius IQ and doesn’t need to do any work really which is good as he refuses to do all work. He doesn’t have any hobbies - he is interested in his a levels but doesn’t want to take them further when he finishes. He does certain things on repeat like play certain games or watch certain tv programmes but that’s more of a repetitive stim type behaviour. He has done a few hobbies in the past but was never interested enough to carry it on. He doesn’t have social media, friends, interest in anything really.

Yeah this scares me too.

What does school/college say? What are his interests?

I know of two autistic and adhd young people who went on to become a chef and a gardener.

He has such a high iq he’ll get bored.
Is he passionate about anything?
computer/ai or even creating something new?

My friends’ son is 18 and got a supported apprenticeship in local government. He goes into the office two days a week and works from home three days. She is practically doing the job for him on his wfh days. He demands an incredible amount of support, clocks off at five and then on his PC all night. He’s struggling on so many levels. I don’t know how much longer they can both keep it up. She and DH are his only ‘social life’.
My similar nephew went away to uni but lasted six weeks. He was ill prepared though and now attends a local university but goes into lectures, does the work and straight home. Seems rather lonely. I would go as far as to say he’s quite depressed.

We are in the same position and the support is non existent.

Thanks for replying. It sounds very tough op. My son was like that at his worst and we had the same fears. setraline helped him as it helped with the anxiety element and tgen he engaged with some soeech and language therspt and OT which hrlped more. Then he got a hobby. Still not convinced he will hold down a job.

but im not sure it sounds like your son would agree to trying something like medication.

I definelty think looking at housing list criteria and putting his name down might be a good plan..