To be terrified of what may happen to my son?

[TerrifiedForMySon]

Teenage DS2 has severe learning difficulties and is on the autistic spectrum. He is very able to compared to others with a similar diagnosis but is still at a great disadvantage to his peers.

He has never engaged with education so has no qualifications of any kind and looks likely to be kicked off a college course we put great efforts into getting him on as he won't engage or follow instructions. We have been told there are no other options for him and there isn't. He has no hope of working not only due to his difficulties but because he refuses to engage if what he's doing is not 'fun'. Social services have recently told us he doesn't meet their criteria for services so won't be eligible for sheltered housing.

All we can do now is perhaps apply for benefits for him when he reaches 18 and hope we are around for a long time to look out for him.

Since SS have said he's not eligible for help from them it's dawned on me that we are on our own with him. He's very vulnerable and easily led, still a young child in a 6ft 3 inch body in many ways, he could never be independent. He behaves inappropriately and has meltdowns too.

I have nightmares about us not being around and him living on the streets or endangering himself. Sometimes it's agony thinking about how he could end up , but also agony imagining that he will never leave home and having to put up with him for ever .

He has siblings and I'd expect them to look out for him but what if they can't due to their own lives? He can be very rude and aggressive to them too.

I've also read horror stories of people like him being institutionalised so I'm kind of glad that SS won't be having dealings with him but what kind of life is he going to have to anyway?

AIBU to be so scared for him?

What area do u live in op? Some areas have special schemes to help adults with additional needs into work.

Sometimes it feels like there is a window for independence at around 18-20 after which it is very hard for the young person to move out of the home. Perhaps it is better to aim for this to happen in some way, even if ‘independent’ living requires a huge amount of support from outside than anything else. Staying at home throughout 20s and 30s seems to increase dependence from the limited experience I have about this. But I don’t know very much so may well be wrong.

My dd loves her brother, funny that

If he had a PAD /ASD /LD profile...

Letting him loose with chainsaws is really not a good idea!

Yeah, tree surgery requires a large amount of dexterity and focus - you are swinging around on a rope wielding a chainsaw after all. Using a chainsaw safely requires lots and lots of attention to "unfun" things.

Also OP if his measured IQ is 70...this is borderline intellectual impairment /learning dis...
As you'll know assessments also look at impairments in other life areas too!

It sounds that the picture is complex with your son...
It sounds that the demand avoidance may have more impact on his profile than usual LD?

I am guessing he would fall into the group of young people with ASD who have a ‘demand avoidant’ profile.

That was my immediate thought too.

OP would you be better off asking for this to be moved to another topic - maybe SEN?

My DD aged 15 was apparently NT until earlier this year and I am now facing the fact that she may never be independent - you really need to do a lot of research on what is available; you may have local services - e.g., I have two family support workers, one from IASS and one from the Child Brain Injury Trust. This is the link for IASS they have slightly different names in each area so have a look and see where your service is then get in touch they have literally saved us:

cyp.iassnetwork.org.uk/in-your-area/

How would I ensure that siblings didn’t feel obliged to take on the burden of care after I am dead? Well, that’s a difficult question but I will try to answer. I think I would make it abundantly clear to the siblings that it was not their responsibility both whilst I was alive or after my death. I would say things like the fact that I would prefer them to lead their own lives. I think clear communication is the key and making it clear that it is not expected in any way.
I imagine that your response will be that as the sibling loves their disabled sibling, they will want to and that’s great, but please also think of the longer term when husbands/wives, new families etc also become part of the picture. If everyone is happy for able sibling to have the additional responsibility, then that’s cool, but it’s a huge responsibility to take on and one which will become harder as they take on family commitments of their own.

(Assuming you are in the U.K.) you can apply for adult benefits from 16, though you need to give up child benefit first. Have you applied for pip? That's some extra money at least then look into supported volunteering, most cities have some sort of project - in mine they work in the park (would he find gardening fun enough?) unfortunately to get help they do need to engage to a certain extent, it took me three years to get my daughter to attend an appointment with the asd service, she's older and the mid teens were particularly hard.

Demand to get help or you will slip through the net - unless he is considered to not have capacity only he can apply for benefits even.