AIBU to consider a future with DD staying at home?

[Thefutureisorangey]

Family consists of me, DH, DS (19, at university) and DD (16, in yr 11). We are starting to think about retirement but can't afford it without downsizing significantly. There is no other family.
DD is lovely, sweet, honest and vulnerable. Many diagnoses, including ASD, but not helpless - she just doesn't enjoy the chaos and noise of the world. We think she might scrape some grade 4s in her GCSEs. A levels wouldn't be academically appropriate, and our local colleges, though great and providing a brilliant provision, are rowdy and bustling.
So here is my AIBU. DD is showing no signs of ever wanting to fly the nest. She has explained this. We have tried to broaden her horizons but she is so introverted that even holidays now, if we could afford them, would be problematic. She wants to live with us "forever."
Has anybody got experience of this? In just a few months the school is going to want to know where her "destination" will be. Apprenticeships are crazily competitive, level 3 qualifications will be almost certainly too difficult for her, the level 2 qualifications that she's interested in are all very male-centred roles that she has recoiled from when she's actually experienced the environment, and I'm not sure what to do with her!
If we allow her to just stay at home, cleaning, cooking, volunteering for local old folk (which will very soon be us!), is that even an allowed thing?

Hi @Thefutureisorangey not sure if this has already been suggested. In our area we have a fab 16-35 youth service for young people who are not in any education , training or employment or are at risk of becoming so. They work holistically with the you g person, looking at mental health, well-being and social stuff as well as the education / employment stuff. They would be perfect for someone like your daughter.
mainstream routes don’t suit everyone. Hopefully you can find support for her to access what works for her.

@oldstudentmum A very unfair reply, The OP is looking at ways to help her DD achieve as much as she can realising her capabilities.

Looking from the outside in you don’t always see clearly.

My family is dealing with the fallout from an aunt who kept her son (now in his mid-50s) at home for his entire life. He has a combination of learning difficulties which have never been classified: went to a special school until he was 16 and then lived with his mum. She died four years ago, in her late 80s. She'd downsized several times in order to raise money to support them both. They ended up in a grotty caravan.

Since his mum died the rest of the family have been trying to get him help — but he is deemed to have capacity and there is no assistance for him. He owns the crumbling caravan, left to him by his mum, and isn't regarded as needing housing support. He started work collecting trolleys at a couple of supermarkets and washes up in a pub in the evenings. He doesn't qualify for PIP but he doe get UC — which he constantly mucks up because he can't cope with the complications. After being feather-bedded for so many years it's a huge struggle for him and for us, who are constantly called on for additional support.

I'd advise slowly preparing your daughter for independence and resisting any thought of just allowing her to stay at home. Others with personal experience have offered suggestions here. She'll likely change a lot in the next five years and there are all kinds of work that might suit her. You'll need to take a lot of advice on the best way to set things up for the future. Leaving her the house may mean that she doesn't qualify for any of the help she'd get if you left her homeless. Getting her into independent living or supported living before you pop your clogs may well be much better for her in the long run. If my aunt had been able to let go of her son when he was offered a place in a Mencap community home, things would be very different now.

Just from my perspective as an autistic woman who was once an autistic (and agoraphobic) girl - at 16 I was very different to how I was at 18. I had 0 friends and thought I would end up living with my mum forever at 16. When I was 18 I realised I was sick of being under my mums feet and started doing GCSEs at an FE college, by the time I was 20 I was off to uni (not without other issues but on the independence level I was ok-ish).

All this to say don't underestimate how much she might change, it's such a time of flux even for those of us with high anxiety dependent on routines.

I think a gentle part time course without any particular career goals could help her get out of her shell, like gardening/cooking etc, maybe something frequented by older people - I was always more comfortable out of my own age group. That and/or volunteering for an organisation filled with ppl with their own neurodivergence who were guaranteed to not judge me were what helped me make the transition to adulthood.

You need to raise your expectations just a bit - she'll live down to them otherwise. Can you afford to get her any help - a counsellor or other support - someone with some SEN experience - or talk to your doctor? We have a quiet little mouse in the family and she was helped enormously by a counsellor. She went from avoiding places and people in groups and only hanging out with three close friends and doing what they did, never initiating anything, to three years on holding down a college course, commuting and a job in a noisy environment. You won't be here forever OP and she will have more chance adjusting to new things and broadening her horizons when young than in middle age. Good luck!

What were the level 2 courses she was interested in? What environments put her off?

I have an autistic daughter and she is maturing more slowly than her peers. I would be surprised if she was ready to leave home at 18, I expect sometime in her mid 20s, with probably some extra support initially. We will certainly move towards her having greater independence, but realistic that it will be a bit later than most.

I would definitely definitely not let her world get any smaller. If her comfort zone gets smaller, she will experience such huge anxiety that she will not get back to where she is now. I would arrange for her to do something that keeps her leaving the house, and keep up the social skills she has now. In time, encourage her to expand her comfort zone.

What does she actually enjoy doing op?

There are online courses and ‘home school’ qualifications you can do online from home. Something to do with social care perhaps? She could get work in an old person’s home say.

Also what have school said they think will work?

My local town and the town next door have cafes/shops specifically run for and by people with additional needs. They are lovely places. My local ones are called Mudlarks.

I used to have two old brothers as my neighbours and they lived under this arrangement with their own mother who had died many years ago. They stayed bachelors at home. I do think they worked when younger though. They inherited the house when she died but the last brother died a few years ago. They seemed very happy with their arrangement.

I think you need to raise your expectations. The world can seem a scary place for non neurotypical teens, but they need to get out there, with support.

At 16 we had no idea what our dd might do. She has an ADHD diagnosis and struggled with school - talked a good talk, but could not organise herself or get things on paper, was terrified of exams and rushed through them, was impulsive and annoyed her peers, often in trouble etc. Was an outgoing, self confident child but lost that as a teen and became very anxious. She had an EHCP so did have support. Didn't do well at GCSE though was considered to be capable of doing so for some subjects at least.

She had sufficient results to do a level 2 course but college suggested she started at level 1. She was ok going there, had support, but continued to have the same problems as she had at school, though there were minor signs of increased maturity and she slowly became better at keeping friends. Changed to a different course in the second year at level 2 but no real interest in either subject.

So left at 18 (nearly 19) with no ideas as to what to do next. We managed to get her to do two voluntary roles but then everything closed for the pandemic. She did nothing really after that until she was 20 when a friend pushed her into getting a job. Hated it and left after 4 weeks. Nothing again for about 8 months though acquired a boyfriend who lived some distance away and started visiting him. Tried a few more jobs, none of which lasted and left weeks/ months where she didn't pursue new roles but her attempts did build her confidence and she got to the point where she was nearly always offered the jobs she went for (all unskilled work).

She now has a job she likes and is doing well at, has matured a lot and it really feels she is getting somewhere. Has made new friends and still has the boyfriend. She is now nearly 22 and things look a lot more positive. (She still lives at home but has ambitions to move out one day - not currently realistic due to her income though).

Your dd will grow and change a lot in the next few years. She just needs support to get out into the real world.

She needs to learn to earn some money no?
my niece has done a level 2 beauty course, part of which is working 3 days a week, she’s at Boots and gets paid. Might be worth investigating something like that?

I’m indonesian and in indonesia and many other asian countries you are not leave nest until your marriage. Woman or man the same. I still have friends who are 30 and he is a man and still living with his parents. Of course you DD can stay with you if you want to. Hopefully she will meet someone and leave the nest when she is ready

The OP has made it clear she isn't going to get the results required for university.

I think you are doing your daughter a major disservice by buying into excuses not to do things. Many people commute an hour for work, it's not too far. You need to equip your daughter with life skills and independence. I would be introducing the idea that she will be moving out of home when she is an adult. To do that, she needs to earn an income. What does she think she'd like to do? Staying at home and doing nothing is not an option, so she needs to start thinking about what she wants to do. You should have been having forward looking conversations with her all through high school. It sounds like you've been making excuses as to why she can't do things. You need to stop that and start being positive about what she can do with her life.

Legally young people have to stay in education until the are 18 & schools have to report on the destinations of their student at 16 & 18.
Anyone not in education or training are followed up.

You have a long term responsibility to your DD and would this be best for her long term? Or easiest for you?

What will she live off? She's 16 and could reasonably live for 70 years or more from now.
What will she do when you die? Or if you need long term residential care necessitating the sale of your home to fund it?

AlwaysLatte did you actually read the post?
Apologies - Covid brain fog. I meant school, not university.

It’s easy to think that the only options out there are the high achieving, top level ones but they aren’t. You’re saying what if she could find eg a volunteer job but what if she could find the type of job that actually most people have? People go reduced hours and work in everyday places- offices, shops, cafés, hotels, hospitals. In some cases they have additional needs and are accommodated. My mum always said my brother wouldn’t be able to work/study, my dad always said well we and he should see if that’s the case first and although now he is home full time, it was definitely dad’s way of thinking that stopped things being much harder. The world is anyone and everyone’s oyster and anything could happen. You can have provisions for her being with you, but she needs to learn about living independently (even if she’s at home) and continue with some form of education that gets her out and meeting people. There were courses my brothers did with Asperger’s Ireland that were all about learning everyday skills for being independent and I met loads of people who ended up working as veterinary nurses, in cafes, libraries, game shops, hotels, offices. Most not full hours but some living away from home. All I’m saying is present her with the same options as anyone else, tell her of course you’d always have her if she needed it but she can do or be anything and she should try . Hugs op, I know the fear too well X

Genuine question: who follows it up and what do they do? I’ve never heard of anyone actually being followed up or what happens if the young person hasn’t gone on to FE or work/training.

@ancientgran fantastic recommendation for eatthatfrog.ac.uk/ thank you ! I'm so pleased to know us mums with SEN DCs starting to peek into the adult world are not alone . Thank you @Thefutureisorangey for setting this thread up.. hopefully it is evident just how many of us want to support you and need support ourselves . This is the biggest question so many of us have: want will our SEN son or daughter do . Hope we can keep this chat going xx

Gah! I lost a long post! I am going to add some resources here, but the best thing to do is Google the name of your LA and ‘preparation for adulthood’ or autism and preparation for adulthood. Quite obviously budgets are going to be slashed in this area, and already have benn. It’s changed a little since I worked in the area, but here are some links. Also contact your local SENDIASS for local sign posts. Look on the Local Offer (Google local offer and your LA name. If a YP does not pass GCSE m, they can repeat them at college or do functional skills courses in maths and English.

I was coming to say that's not true you can leave at 16 when I thought I'd better factvcheck. Turns out where I live Wales (and scotland) you can legally leave school at 16. Not so in England as you say. Seems odd to me to force everyone to continue further education when some are surely not suitable.

www.ndti.org.uk/projects/preparing-for-adulthood

www.autism.org.uk/what-we-do/help-and-support/transition-support-service

To answer a pp, if a yp 16-18 is out of education, employment and training, there should be a NEET team to support them. While all yp 16-18 are supposed to be in education support or training, I think the legislation was never enacted, so it is a grey area.
www.ipsea.org.uk/annual-reviews-in-year-9-and-beyond
If I think of anything else, I will post it, but having worked in the area (and having two autistic teenagers), you have to really research this for yourself. Funding in the area will only get worse.

It’s not just education - it is education, employment or training - that can include life skills at college in England - everyone should be accounted for and theoretically no one should fall through the gaps.

I haven’t read this in an age! But it is the legal framework around SEND and education. Read from chapter 7.

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

It wouldn't be in her best interests to keep her at home. She needs to builld a life that works for her and doesn't rely on you and your DH being immortal and always there for her.

We are going to be in a similar situation in 6 years or so, and I don't have a plan yet but permanently staying with us won't be the plan.

I know that supported accommodation for adults with ASD exists, and that some residents have jobs and a decent income but need support for life admin (and sometimes basic stuff like managing medication and personal hygiene). What I don't know is how difficult it is to get a young adult a place in such a setup.

I occasionally see adverts for recruiting school-leavers with ASD onto various kinds of training and employment opportunities that are specifically tailored towards people on the spectrum but again I don't yet know how difficult they are to get a place on.

The one I particularly remember is a chocolate factory in Cambridgeshire somewhere which looks like a wonderful place to work - I hope it is still thriving in 6 years time!

Do you get the Autism magazine? There's often articles about opportunities like this.