Son,26, NEET with autism

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 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.

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.

@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.

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.

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.

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.

But how do you encourage other activities, like getting a job? It's all very well to just let them get on with it but what's the long-term plan here? I have an autistic cousin (I am also autistic but function a lot better!) who is pretty much doing the same thing. He is 31, nocturnal, lives in a mess in my granny's spare room. Every 6 months or so he succumbs to pressure and gets a menial job, hates it after a few months and leaves to lock himself back in the bedroom. Yes, it is very much his comfort zone but what will happen when granny dies? And he has no skills, no routine and no plan for the future?

Tell me you nothing about autism without telling me you know nothing about autism.

OP, adult social services. I fear I will be facing similar issues with my own son. Trying very hard to steer and keep on top of it. I hear you, it's extremely hard work

Honestly I think it sounds ridiculous and very little of this is to do with ASD

If this has nothing to do with ASD then I wonder why my adult sons have exactly the same issues? Additionally I am a foster carer and the OP has described so many of the young men I have looked after and stay with us for long after the official fostering ends at 18. In my experience only this is absolutely typical behaviour and lifestyle for a young adult with ASD.

@perplexedandanxious are you at risk here? I mean step back from this,

He is extremely controlling, these behaviours are highly unsociable, he is using drugs basically he is an addict, you can be psychologically dependent on weed and it sounds like he is.

I think this situation has all of the scope to become volatile if you confront him to hard. I think you need to get services involved because to me it reads that you are the proverbial frog in the pot of water. This is very bad and has the potential to become volatile.

Honestly I think it sounds ridiculous and very little of this is to do with ASD.

🤦‍♀️ It has EVERYTHING to do with being autistic. His very inability to have a “normal” everyday, functioning life and job is because he is autistic.

Just wanted to reply on one point because it was something I experienced with my son (honestly you could be me writing this except my son would not be able to work). My now adult son with autism who also lives in a bombshell of a annex where he does not notice or care about the mess. He also games all night and sleeps all day, he woke at 5pm yesterday. I used to find this frustrating but then discoved so many people with autism love the relaxing atmosphere in the quiet and dark of the night when they will not be uninterupted by the household. And therefore sleep during the light and more hectic daytime. I know when I discovered this I stopped "going on about it" and letting it bother me. Now I think of it as he is doing what is best for him and only wake him when he has appointments or anything.

This sounds very difficult. You might find speaking to an organisation who can offer emotional support and practical advice/referrals helpful?

family-action.org.uk/get-support/familyline/

I'm so sorry OP. It must be so stressful and you must feel so helpless. Definitely contact Adult Social Care. At the same time, dont take his anger and aggressivity as not wanting your help. He probably hates his situation and fea his future as much as you.

I’ve seen it myself. Ex is not a drug user, but evidently has undiagnosed ASD. Intellectual but executive functioning abilities became more difficult over the years to the point I felt like a carer (having to remind to wash/brush teeth for example). Was a far bigger ‘slow burn’ but it did make me see exactly how to try and better support our own ASD children. Even if it means putting less effort into education, something has to give if want to avoid a ‘but they did so well at school, why are they not a functioning adult’ situation.

This isn’t me having a go at yourself by the way. The way we recognise how all autistic children need different support has changed greatly in the last 20 years and there is now a recognition that not having an LD with autism doesn’t mean high support isn’t needed at school and later in life. Please try and get a support worker for your son so he can recognise that there is a compromise to be had, that he won’t have a long and happy life by fully leaning into his difficulties doing day to day self care.

You need to start talking to your son about his future (he will panic and likely get angry but he needs to know that change is coming) and also to adult social care. Don't expect too much from them though- bright autistic people tend to be treated as if they have no disability when it comes to service provision.

The reality is that his autism is being compounded by drug use (he may also have adhd and be self medicating) and - unless he starts accepting help and wanting to make changes - his options are going to be a) his dad's b) you supporting him indefinitely or c) the streets.

As the mother of an academic autistic with considerable issues with executive functioning you have my utmost sympathy.

I'd charge him rent for annex and ban him from bringing weed into house or annex. Talk to your ex and tell him you will be downsizing and he will need somewhere to live. Maybe he could live with exh.

You can always make a referral to adult social care and tell them about his autism.

He might not accept their help but at least he will be on the system and a record of your concerns.