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?

how is he affording to live and buy expensive takeaways? There’s a lot missing from this post it seems. I sympathise with the ASD, I also have it and holding down jobs when I was younger was tricky. However, millions of us manage is without peeing in bottles etc… that’s pretty offensive to blame the behaviour all on Asd. I’m afraid you’ve been way too soft on him really?

You can speak to support services, he is an adult with a diagnosed disability even if he chooses not to recognise it. It’s best to get the ball rolling now instead of blindsiding him and social care when you’re ready to move and can’t take him with. He needs a support worker or at least an assessment, it sounds like he struggles greatly with sensory and food control. Does this extend to hygiene? Sadly being intelligent is little to do with autism, this is why terms such as Asperger’s or ‘high functioning’ are obsolete, when it comes to adult living this is evidently where the real struggle shows itself.

He is 'living' because I am paying for his accommodation in the family home and he has money because his father (from whom I am divorced) gives him money and weed.

The weed is a huge problem but his father (who I divorced for his drug habits) thinks it's great and gives it to him. And I cannot stop that. Believe me I have tried for the last 15 years.

Maybe I am too soft. I'm certainly very unhappy , and as he gets older and the divide between his emotional maturity and that of my younger children gets wider and wider I'm increasingly worried.

Thank you. Would that be adult social services? Or ?

surely the answer then is he goes to live with his dad and they can live however they decide? Honestly I think it sounds ridiculous and very little of this is to do with ASD.

And yes, it extends to hygiene. I had wondered about sensory issues, I only make the point that he is bright, because he has no 'learning disabilty' which seems to make accessing services easier.

How do your other children view the situation?

I don't have much advice, but I wonder if his additional needs are much greater than anyone realises. It sounds like he has ADHD (very high comorbidity with ASD), and that a diagnosis and meds might help him. Sounds like he's self-medicating with weed and junk food.

Meds are honestly life-changing.

He needs an adult social worker.
I have severe adhd and it was really helpful, however getting one is quite difficult.

What do you think ASD is? And no, not everyone with autism lives like this before anyone jumps on me, but many adults (usually male) have a breakdown in functioning ability after school. Because learning disability was (is) only seen in academic value, those like the OP’s son who evidently has a social/executive function disability has not had the full support they needed from all areas of development.

The other children are alternately fed up with the hygiene / mess issues, and trying to be supportive. They are all at Uni, so only home in the holidays. It's now, I think because the youngest has completed her first ten that I see that now even she is more capable, more mature, more independent that he is.

Going to live with Dad is not an option. Dad is a very heavy drug user who lives with his very elderly mother. He has never had the children to stay even from when we first separated (I insisted because of the drug use) He pays nothing and does nothing except dole out money and drugs. He is not an adult, let alone a responsible parent. I am on my own in every way that matters.

@Lostthemarble , thank you. That's exactly it.

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.

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 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’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.

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.

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/

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.

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.

@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

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.

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

I think he hates the situation as much as anyone would. The gap between he hand his siblings is becoming more obvious and will only get bigger . I have a lot of empathy for him, I know he doesn't WANT to re like this.

It's the masking and refusing to accept that anything is different / needs different solutions / there are any issues with living like this. Refuge in fringe political opinions and online sites - rejections of society because he feels he doesn't 'fit in'... this is all very hard.

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. But I have to do something, now because it will take ages and in 4 -5 years the situations has to change.

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?