to ask if you have an adult child with learning difficulties/ASD where do they life?

[Sanjii]

DS has autism and learning difficulties, not even 10 yet. I live in the here and now as life is so consuming and never really think about the future (weird, I know).

I had a long chat yesterday with a friend who asked what would happen to DS when he is an adult. I said I didn't know. I was thinking some sort of supported living. She then said she has elderly neighbours who are in their 70s still have their daughter with down syndrome living at home. I then had a Google and I am none the wiser what the standard is in the UK for those, who are unable to live unsupported due to learning difficulties.

Any posters on here with adult children who could tell me?

The secondary school years tend to give the insight on what the future holds. Under 10 I could see myself coping till he was in his 20s as he was very laid back with no violence, by 12 I knew it would be an accomplishment if we get till he is 16. The children I have met along the way similar to him have mainly stayed at school, two are in full time residential and one Monday to Friday residential school and a few are beginning to prepare for the prospect of residential. Puberty was and still is a lucky dip on the impact of looking after children like my son.

Thank you so much everyone who has shared on this thread. I have a son with ASD, he is still primary school age, but I've been thinking a lot about his future. This is one of the most helpful threads I have read on MN!

Thank you for this thread op, my dd is 10 asd/adhd ,so a long way off adulthood and I sometimes wonder if she will manage independent living. Hard to tell atm as I would consider her vulnerable but plenty potential to be a competent adult. I would certainly look into supported living if it came to it!

My ds is quite well known on here.. He is profoundly deaf, dyspraxic and autistic...
When he was 18 months old I was told it was unlikely he would walk talk or live independently.
He went away to residential school when he was 7...He was moved from a shared house into his own flat last year and is doing brilliantly... He has the Ring Security system and specialist safety equipment.... The town as a whole helps keep an eye on him and I'm very proud of him...

Forgot to say ds travels all over the country on trains with disabled assistance.. He went to Crufts last year and met the Supervet.. He Facetimed me with Dr Ranj while I was in Poundland last Christmas.. Also Ftd me with Samuel West when I had just taken something out of the oven. I looked like a house brick...
He got a personal birthday video from Justin Fletcher last month!

elder, that is brilliant that achieved so much. His little travel adventures sound amazing

I have a 14 (almost 15 year old dd with ASD), she’s at a specialist school and wants to go to college at 16 but I feel a residential may suit her better, she doesn’t have great life skills despite me trying hard to reach her, she has no control and pinches food at home and breaks things that don’t belong to her, my home often feels like a prison as I have to keep doors locked and I can’t have anything nice. The thought of her being at home with me forever scares me, she wants to be more independent but to do that she needs to learn skills which she doesn’t want to learn from me. We will be looking a assisted living or residential school at 16 or 18.

I’m reading with interest -DS2 is 6, has ASD (more like Aspergers), with no learning difficulties, but poor executive function. I sometimes wonder what the future will hold for him - I suspect he’ll be your DS CoronalsShit, I could absolutely see
him knocking about the place in a Batman mask or balaclava and not understanding what the fuss is all about 😂. He’d also live on cereal and nice n spicy nik naks.

I don't know - DS is high-functioning but not necessarily so in life skills - I've kept juggling the balls so far and he's doing better than most - really well considering all the barriers he's faced an hurdles he's jumped.

Whilst keeping up with the here and now, I'm keeping an eye on the future too, adding and encouraging his life skills; if I dropped dead tomorrow, he'd need supported living as there's no one else who could step into my shoes right now.

i'm just playing it by ear, winging it, doing my best and hoping for the best.

DS is 18, 19 in a couple of months.

Forgot to also say that ds2 did some BBC drama extra work with Ruth Wilson just before lockdown.
He saw a newspaper article advertising for extras... He took his support worker with him. The producers saw ds and sw signing and much to the alarm of the sw she was roped in and they arranged for them to be seen signing in the background of a job centre scene... He was introduced to Ruth afterwards and apparently she was surprised he was the only deaf signing extra and that he did fantastically well! ☺

My DS is nearly 19 still lives at home but attends a special needs college where he is transitioning to work did 1 day a week at a supermarket pre covid hopes to start back up a placement in the new year. He has ASD and below average intelligence he tool his GCSEs at a mainstream school but didnt do too well. He got the lowest grades in most. For now he will stay with me he is learning to drive and thats going well and he enjoys college as there is much less pressure than school. His emotional development is behind so he is more like a 16yr old. I dont know what the future holds but I do know that he has matured and done more than I ever thought possible when he was 10. He has his own phone bank account and is pretty ok with money. If he learns to drive this will give him more independence. My main worry is freindships he just has never been able to maintain any. I really hope that changes in his future.

Just reread my last post... Should have said she was surprised he was the only deaf signing extra and she told him he did fantastically well.

Not my son, but my BIL. He lives with MIL and when she's unable to have him living with her / or dies then I assume he will come to live with us.
We'll leave him some money in our will (although obviously the majority will go to our own children). Hopefully the money could pay for some sort of help.
My dh has a strong sense of duty towards his brother which is understandable. I won't have our children feel that they have to care for their uncle should he outlive us though.

I have a sibling with MLD, ASD and a diagnosed mental health problem. They are 40.

They have lived in both residential and supported living. At the moment in supported living.

It's not easy to get the right place and you have to be pushy to not get palmed off with something that doesn't work but things are better than they were in my opinion, ie what seems to exist now in provision didn't when they were early 20s and a lot of the problems we've encountered could have been avoided if they had.

Your child will be housed at the cost of social services / the NHS, thru will receive benefits that will cover cost of living but if you want things like a nice holiday abroad with then you'll probably always have to subsidise that.

Personally I don't think my sibling does too badly, they've got enough money for everything they need. Accommodation is good but that's only after a number of failed placements.

My son is 23, with ASD and mild/moderate LDs and OCD.
Went to special school (no gcses or anything), had direct payments for some years but then turned 18 and they basically said his PIP would have to fund them.

SS LD team came to assess him and decided he was magically way more able than he had every been assessed before... and that was it.
No support, nada.

He will never live independently. He has some skills and can follow a taught routine perfectly (..Mencap helped him get a job in our supermarket..perfect employee!) But his understanding of the world is VERY patchy. He can't look after himself, or make meals, or manage finances.. Can't even shave himself. Has a brilliant memory for his obsessions but can't remember to put a coat on if it's raining!

He falls in the cracks... not able enough to live independently, not disabled enough by SS criteria to get support without a huge fight.

At some point we WILL fight. But not yet. I can't face it yet...

DS is 21 and autistic. He lives at home with us, and he will do for the next few years. When we move house we plan to get somewhere big enough so that he can have his own living space, and later on I'd like to buy him a separate house, but it would have to be on the same street as us - I'd have to pop in every day to check on him (or hire carers to). He went to a specialist residential school from 11-19, and in the final 3 years he lived in a flat with carers and other students, so it was similar to a supported living flat than a school. We had the option of him going into a supported living placement after school. But he preferred to be at home due to the various restrictions - internet use, rules, lack of privacy, not being able to relax properly like he can at home, noise from other residents. He's not very sociable and he doesn't enjoy the kind of activities they do and would just rather be left to get on with doing things he likes on his own. So he decided he would prefer to live at home than in supported living. I think it depends a lot on your child's personality as I think some people really benefit from supported living, if they are interested in all the things it has to offer and if they need the extra rules in place.

He is independent enough to use public transport on his own, navigate and go to shops and other places by himself. I can leave him at home for most of the day safely, but he won't have got washed or dressed and will have eaten snacks and played computer games or slept all day. He's not academic, can't drive, and is only interested in self-chosen activities, so he didn't do well academically and wouldn't be able to work in an ordinary job. He is working from home right now, but he is employed by my business, so I can be completely flexible as his boss. He is also due to start an OU degree, but I will have to provide a lot of support as he needs help over and above what could be provided through DSA. He's never had any problems claiming benefits though and he has a comfortable enough income with benefits and his part time wage. I am helping him build up a pension and he will have enough money to be comfortable and to hire his own carers when we are no longer able to care for him.

that is pretty shocking, medusa.

I hope you can gather enough strength to challenge this in the future.

how on earth can SS declare that someone with such a level of need would not need help? If you couldn't look after him tomorrow, what would happen?

It's these kind of accounts that scare me really.

This is not something I really want to think about ,my son is 10 he has severe autism and learning disabilities and is non verbal ,I know we will have to think about supported living at some point but it upsets me to think about it .

I am in a similar situation op with a son the same age, I don't have any advice but following this thread with interest.

DSS lives in his mothers house.
DH is fighting hard ( albeit a losing battle) to try and help him move to some sort of supported living accommodation.
She completely controls him in every way, including financially. He has no access to his own benefits, doesn’t work ( he could maintain a basic job) and spends all night on an Xbox and all day asleep.
There are some amazing supported living services locally-SIL manages one but we are running out of time I think 😞

Thank you so much for this thread OP. I hope it keeps gong too as support for parents of DC with LD is so essential.

My DD is nearly 9, but mentally about 2. Non verbal. Severe LD. It's been clear for some time she'll never be able to live independently but we've only just started to consider what the options might be for her one day. She's not a at a special school yet, that's our next step I suppose. The future is frightening but just being able to talk to people in the same position is really helpful and gives hope!

My brother has autism and learning disabilities and for the past 5 years has been in supported living accommodation. He does get PIP and also has a part time job. His workplace are extremely supportive and he is happy there. It was a real struggle to get funding, though. He was assigned a social worker to look into his case who just refused to accept that he couldn't live independently so we got our local MP involved. There is no way he could manage his finances on his own and he is very vulnerable. I'm lucky in that I see him often as I live about 10 minutes away and I speak to him daily on the phone.

I have HFA/Asperger's but no LDs and I have lived independently albeit with the support of my partner and at some points social workers and support workers from when I left home at 18. But obviously I'm right at the most 'high functioning' end of autism I guess.