Son,26, NEET with autism

[perplexedandanxious]

Posting here for advice and traffic.
My eldest son is 26. He was diagnosed with (then) Asperger's syndrome in primary school, but 'sort of' coped in mainstream school and never had any extra support. I say 'sort of', because despite being bright he got only 3 GCSE. He went on to college and got a level 2 qualification but was kicked out of the level 3 for non attendance.

He has been mostly out of work in the last 5 years. He will NOT go back to any form or education, he will NOT mention his ASD on any application or at any interview. I am pretty sure this is a main reason why he keeps losing jobs (his ASD)

He is bright, can be handy with fixing things, is kind loving and generous (when he has money). He is my son, and I love him very much.

He lives in the most disgusting way, he is in an annexe to the family home, think bottles of urine, no bed sheets, rubbish everywhere. He is morbidly obese and despite food being provided (I cook from scratch most days) and him joining us for family meals, he will then order a burger and chips. He games most of the night and sleeps all day.

I have very little control over this. I could kick him out, but he would be on the street (as he won't tell anyone he is autistic which would make him vulnerable and therefore eligible for at least a roof) and I cannot do that.

I am approaching retirement, my other children are at Uni and when they are finished and independent I need to sell the family home and downsize. I do not want him to come with me (for his own sake as much as mine) ...

He is incredibly defensive and gets super angry when I try to discuss the issues with him and I do not know what to do. There is help and support out there, but I cannot access it on his behalf ..

Any ideas?

I expect very little from ASC - children's services did fuck all to protect them from my violent drug using ex, and because he was deemed to be 'ok' at school we got zero support

I understand @perplexedandanxious. My autistic kids are academic and got precious little support at school (primary worse than secondary, surprisingly).

I have to say I worry about my son struggling as an adult like your son is. I think it is an all-too-easy trap to fall into. I look at his hatred of personal hygiene tasks and worry he will just stop showering and brushing his teeth. He hates leaving the house - I’m so afraid he’ll be a hermit.

Wish I had advice but I just have solidarity.

Don’t give up. My cousin who sounds similar got a shop job at a similar age and has held onto it, and he’s thriving. He got it through a charity/support group though.

@Catza this is exactly what I am afraid of. This doing nothing, whilst I get it's part of his ASD and in a way it's a refuge from having to cope, it can only be temporary. And the longer we leave it, without the basic skills to cope independently (let alone work consistently) the harder it will be.

I'm wondering about trying to get him signed off as unfit for work at the moment, trying to get a support worker for getting the basics done (I'm working FT so I can't be there to remind him to wash / clear up / brush his teeth) and some kind of mentoring / support for autistic men to DO something - volunteering or learning a skill / trade ... but maybe that's unrealistic. It feels so whilst he won't talk about it.

I'm not concerned about violence. He has never laid a finger on me, it is most likely he will disappear into the annexe ; refuse to talk to me and only come in when I am at work or in bed . This is the usual pattern when I try to discuss difficult subjects.

Anyone got any ideas re 'openers' that might be less likely to cause defensiveness ??

In the case of the son I am talking about he would be unable to work as his learning difficulties and other issues would prevent that. You ask about a long term plan. Now in his mid 30s, it breaks my heart to think about it but he will unfortunately never be able to achieve independence and it the saddest thing in my life that one day, after our deaths, this son will need to live in a supported environment. Although I have to say sad for us, maybe not sad for him. There is nothing we can do to prevent that unfortunately. If I could, I would. We have tried for over 35 years to give him the best life we can.

My son's elder brother also with autism is able to work and achieve more independence, though frequently loses jobs, but has always been helped and supported by us to work, volunteer or in the past continue in some sort of education. Other foster children, several of whom are now young man, we do try to help them achieve as much independence as possible and do tend to still live with us until their mid twenties (long after foster care has officially ended) in order to achieve that.

I hope I have answered your questions.

@Catza well ideally you have a time machine, go back to when they're 10 and start from there. Unfortunately it's not generally recognised that this is necessary for autistic kids in mainstream because executive function isn't generally that great at 10 years old so the deficit isn't noticed (or you are so busy firefighting other stuff likeschool and friendships that neither you nor your child have the energy).

In your nephew's case maybe start by realising that a job may not be possible (now or ever) and if it is it will likely be part time. Has he applied for PIP? Is he expected to help granny out round the house? Is there anyone who actually cares about him (rather than seeing him as a problem to solve, although he's clearly that too) that can talk to him in a positive way about his future? Someone empathetic who's clued up about autism would be good, the future must be a pretty terrifying place when your reality is so stressful.
I know several autistic adults who lead what the mainstream would consider "successful " lives - a home/job/friends/relationships. None of them have had a smooth passage to get there, none have had conventional careers and all have required (and still require) far more support from their families than the average adult.

Apologies if I have missed this but is he on any medication? Specifically, SSRIs such as Fluoxetine. And if not, would he try them? I ask this because going on them was a game changer for my Autistic weed-addicted brother. I think the brain was seeking ‘something’ it was missing and the SSRI took care of it. Granted the first few weeks are rough so he’d have to be willing to give it a solid 5-6 weeks at least to see how it works with him properly.

Regarding his weight, can you afford, and again, would he go on, weight loss injections? When he is a healthy weight that may help his overall mindset to everything else. Being morbidly obese is horrific to his sense of self worth, self esteem, confidence, and everything else.

After these things I would start to tackle the hygiene issues but not yet. You don’t want to overload him.

My family are not in the UK so PIP is not an option. He also doesn't want to talk about ASD and brushes the whole thing under a carpet and, being an adult, you can't force him to get support.
Yes, we have a loving and supportive household. Nobody is seeing him as a problem but everyone is very worried about him. We've been having positive conversations with him for decades, there is no change. He refuses any support be that family support or professional. He helps granny with tasks if she asks but she doesn't like to ask. He takes no initiative otherwise.
I only see him once a year and we speak over text intermittently. I have a very good relationship with him and find him quite easy to talk to and I will always join in with whatever activity he offers just to get him out of the house. He also has a somewhat unhealthy attachment to his mum and will often push himself beyond his comfort levels just to be near her (taking a train, for example) but when he is there, he does not contribute in any meaningful way, he sort-of just awkwardly hangs around her.
He has the typical hyperfocus moments. At one point he was obsessed with being a tailor and did a course but when it came to looking for a job, he was unemployable due to lack of social skills. He also completed a college course in IT, the same thing happened.
I honestly don't know what we can do to support him better.

He's on no medication . He also had a diagnosis of ADHD but refuses to take medication or see his GP.
I'm not in a position to pay for weight loss drugs - I wish I was. I'm aware that his weight is making him miserable and affects his self esteem.
I can make him an appointment with the GP, but I can't make him go, and I can't influence what he says / doesn't say when there.
I am waiting till after Christmas to try again, talking to him, with a different slant ... I will also contact adult social care , hopefully with his consent, but I will do it even if I do not have his consent.

For those who think this is nothing to to with ASD, I wish it were not. It most definitely is. It is everything to do with executive functioning and ability to manage 'life' as an adult. The poster who said you should (in an ideal world) start at 10 years old, that's exactly right. And you are also right that I was a lone parent with a FT job, several DC and I missed that opportunity, I don't think anyone ever told me about these potential issues - the focus was on communication skills and getting along with peers. And within the highly structured environment of school it's a lot less obvious - and with backup that most parents give their kids it just didn't seem as glaringly obvious as it is today.

Sorry you’re in such a difficult situation. I don’t suppose your ex would pay towards weight loss meds in lieu of the takeaway / weed money? That would cover the cost for certain, and the weed won’t be helping either, it makes you so hungry. As for other meds, I wish someone who has been through this could talk with him and show him how helpful they are to be on. It’s as you say though, you can lead a horse to water and so on. I know you’re doing all you can within your power.

Edited to add, I’ve noticed quite a few people with ADHD mention that the weight loss jabs helped their ADHD symptoms.

My ex will pay nothing. He has paid nothing for years and he will NEVER put anyone else's needs above his wants. (Drugs)

I no longer communicate with him at all. It's a waste of time and energy.