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

[redblueyellow21]

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….

Hadn’t had a chance to post on this thread yet, but I have a 20YO autistic DD.
I’ll post more fully later, but things have been awful for DD the last 2-3 years, but may be improving now.

Id also be interested in a support thread.

This is deeply unhelpful and blaming the parents for “not instilling skills”!

Supported internships, disability confident employers, Access to Work support:

https://nationalcareers.service.gov.uk/careers-advice/career-and-job-support-for-people-with-a-disability/

We're still pretty young but have set up a trust that makes sure they are pretty much set for life. No, we're not rich, but they will have a freehold home and any assets, life insurance, what's in pensions, etc. With support for some things, they can manage that.

I'd be interested in this ,if you were willing to share details of what you did .
We want to do the same thing

Are there any particular things we need to do before they turn 18 and/or before their EHCP ends? We have never had any involvement from social services and anticipate that YP will just carry on living with us for the foreseeable with us continuing to support him and look for, or work towards, a job. YP is in the "has no learning disability" category but in practice can do little outside of managing college part time.

You're welcome to PM me.

Is there any kind of documented disability that supports their inability to work and support themselves? If not, I'd expect they'd just be handled like an unemployed youth.

You need to think about what happens if you died tomorrow with these kids who are dependent in this way. What do they need? Is there someone who can make sure whatever they need is put in place if you die? None of us like to think about this sort of thing and probably won't have to, but we need to for the sake of our kids.

Does your local authority adult social services have a department for helping disabled adults get a job? Ours does (or did).

Does he have an EHCP? Have a look at Choices College

You can ask for an adult care assessment from social care. Mine didn't get any help from children's services but was eligible for support from adults social care.

Thankyou ,I will

I will reply but it might just take me a few hours.

I name changed to blueflutterby X have pm you

Are you for real? Do you really think it is that simple and that people won't have tried this?

Another one here who'd like to join in with a support thread. My adult DC is a bit older than most previous posters' - nearly 29 - and living the bedroom life. It's hard to decide which of us is the more miserable about it.

That’s really helpful, thank you. If you don’t mind me asking where did he go for his Masters? I’m trying to find her somewhere autism friendly.

I’m so glad to have found this thread, it’s very lonely coping with this alone.

He went to Lancaster. They were very good. He stayed on campus.

I’d love a support thread too. Two of mine (18 & 13) have autism and I have a lot of worries about the future…

Mine is older. 33 and living in her bedroom. She gets pip and universal credit in the not fit for work group. We have also set up a trust. She can cook simple meals and follow hello fresh recipes, use the washing machine, goes to the supermarket and seems happy with her life. When we die I think she could just about look after herself now after years of her learning very slowly and the trustees can sort out money/benefits and things like house insurance for her. I gave up long ago trying to get her into work and am her dwp appointee so I can help her do her benefit claim forms and her power of attorney. We spent a lot of time and money on therapies over many years but none of them really made a difference. She is happy doing what she wants each day so we have to be happy with that even though it’s not what we would have wished for her.

I’ve set up a thread in the SN section if anyone would like to join. https://www.mumsnet.com/talk/specialneedsteensandyoungadults/5535847-support-thread-for-parents-of-young-adults-with-autism?utmcampaign=thread&utmmedium=share (under a different user name for privacy)

@redblueyellow21 I Hope you don't mind me posting this on your thread. chat threads disappear after a certain amount of time but this is clearly a long-running challenge for many of us…

Hi Op I have a 17 year old who is autistic and has ADHD. She spent nearly 4 years out of school but started a very small specialist college last September. Something I think about often is whether or not she will be able to hold down any sort of job and live independently. I’d love to live alone but am not sure it will ever happen.

Replied.

Yes please