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Help needed, advice or suggestions

Lunavix

This is my first post here. Im really lost and need help. We live in the UK, just outside London

My eldest son, B is autistic, He was diagnosed aged 9 and is now 27

B was considered 'high functioning' when he was young and although I tried very hard I was never able to get any special help or support for him in school ( that was 17 years ago) 

he managed ok, but always had problems with friendships and peer relationships and as he gt older issues with stay. He completed school with 3 GCSE, not including English. he went t college but was asked to leave, for poor attendance. 

Now he is 27, he has had employment but is usually 'let go' for various reasons. Until recently he has refused to tell employers he is autistic so has had no reasonable adjustments made. 

He is living at home, in a Den in the Garden. The problems are -

1. hygiene, he does not wash often enough r properly. I dontthink he ever cleans his teeth. washing clothes / bed sheets similar.

2. Squalor - he lives in such a mess ( never throws anything away) leaves half eaten food around till it gets mouldy, pees in bottles and just leaves them. 2 months ago I had to get a specialist cleaning company out to sanitise his living space. It cost £1600

3. Financial - he receives UC, but spends it all on cigarettes/ alcohol / junk food. I provide 'normal' food and pay for heating /lighting/ internet . his shoes have holes in, his clothes are in rags, but he cannot / will not do any budgeting or listen t offers of help

4. Organistatin. he has very little he needs to do, but he can't motivate himself to do even that. He has a support worked from a charity, but he misses meetings etc.

I am really worried about what will happen to him. I had an adult social care assessment wh agreed he was a vulnerable adult and should be entitled to support, but provided nothing. We applied for housing who rejected him outright, we applied for PIP who also rejected his claim.

I feel completely stuck, he will not / can't sort out anything , but he can't stay here forever supported by him mum...

  • I don't have anything really to offer in the way of how to engage with your son, but I do have some feedback on PIP which may help financially/open doors elsewhere:

    My wife and I have applied for DLA/PIP about 4 times, and it goes:

    1) Get rejected

    2) Mandatory reconsideration 

    3) Get rejected again

    4) Go to tribunal 

    5) Win

    Get help with the process if you can and push as hard as you have the energy for, the DWP are not there to help, they are there to prevent you from getting help.

  • This will be a tricky one because on one hand you have the autistic traits causing him certain issues and on the other he is exhibiting the worst sorts of teenage behaviour and does not seem willing to do anything about them.

    I'm going to suggest something that may be unpopular but I think it is one of the only ways to effect a change. I will phrase this as is I were his parent so it is not seen as direct advice, only how I would do it.

    I would give him an ultimatum. One where he has to accept he has adult responsibilities (paying towards the bills, living in someone elses home etc) and which will push him towards learning some independence.

    I would setup a meeting to make him aware of the new "house rules". They need to be specific and enforced which could be painful but without them he will just carry on because it is so easy.

    The meeting will discuss:
    1 - If he wants to continue to live here then he has 2 months to sort things out and at the end of this notice period he has to start paying rent and a share of the bills. I would break this down to the lowest level of rent for a room in your area. Draw up a contract for it and it will give him certain rights of privacy but with responsibilities for regular inspections (eg monthly).

    2 - His bill contributions should cover his share of electricity, water, gas, council tax, insurance, maintenance and a service charge if I am expected to do his washing. Break this down so he can see the the real world costs of these things in case he ever expects to move out.

    3 - If he is to share food then he has to return the dishes at a set time, empty the rubbish once a week and will get a set of bed clothes / towels swapped out once a week.  How he lives on his own is his business but if he is using communal furniture and bed clothes / towels then they need to be kept clean too or will need to be charged for replacement much sooner than normal. All this should be made clear in the terms of the contract.

    4 - Internet use needs to be subcontracted too and there will be a clause that allows the password to be changed if the terms of any contract is breached. This is a good motivator for him to keep within the rules.

    All terms will be explicit and enforced but with compassion if needed. These are to teach him skills to exist in the real world but if he ends up with a meltdown then a sensible approach will be taken and time given to adapt his behaviour.

    I don't think you can make him improve his hygiene but you can refuse him entry into the house if he stinks - a simple sniff rule will make him go and wash and change before he is allowes to join the rest of you. Harsh but it makes the point.

    As a benefit of the contract terms you can offer to remind him about the times for his appointments at an agreed time beforehand. You cannot make him go - only remind him. He has to find his own way out of this situation.

    It will be the same with booze, ciggies and jink food. You cannot stop him having these but by taking money for the cost of living from him he will start to realise that these are expensive luxuries when healthy home cooked food is available as part of the contract. Simple supply / demand should encourage him away from spending his much diminished resources on rubbish.

    If you have any family / friends who do have a good connection then I would play a bit of good cop / bad cop and get them to support him to find work, explain what he has to do and why and why being clean really helps is so many areas.

    Having someone he can speak to about all the stuff he really doesn't understand will be important I think.