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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...

Parents

  • I'm sorry you are going through this. I'm autistic myself and am going to be very blunt.

    Autism is not an excuse for the behaviour you described. Everything you did describe indicates your son needs professional help in terms of social care and possibly would be safer and healthier in supported accommodation. He would likely meet criteria for higher rate of PIP as he is not meeting acceptable hygiene or nutritional standards and his living situation is unsanitary and probably unsafe.

    I suggest you contact the CAB and any other medical, legal, mental health and charitable organisations local to you. Appeal against the PIP refusal decision and get the CAB to help with that. Your local branch may be able to signpost you to other organisations who could assist you. Consider whether you should have Power Of Attorney as he may not be able to make appropriate decisions regarding his own welfare and safety. Seek legal advice regarding this. Get your son's GP involved - they might be able to help with alcohol and mental health issues. Ask the GP to refer your son to the relevant services. Ask the GP if they have a Social Prescriber who can be assigned to your son to offer him some guidance. ( However, be aware that data protection regulations might require consent from your son before GP will discuss details with you.)

    You also need to prioritise your own health and mental wellbeing. You clearly love your son and want to help him. But it appears that your approach so far, although kind and loving, has not effected a positive change from him and must be causing you a great deal of personal stress and worry, not to mention financial repercussions. You deserve better than that. 

    I wish you and your son the best and I hope the situation improves for you both.

    Take care.

Reply

  • I'm sorry you are going through this. I'm autistic myself and am going to be very blunt.

    Autism is not an excuse for the behaviour you described. Everything you did describe indicates your son needs professional help in terms of social care and possibly would be safer and healthier in supported accommodation. He would likely meet criteria for higher rate of PIP as he is not meeting acceptable hygiene or nutritional standards and his living situation is unsanitary and probably unsafe.

    I suggest you contact the CAB and any other medical, legal, mental health and charitable organisations local to you. Appeal against the PIP refusal decision and get the CAB to help with that. Your local branch may be able to signpost you to other organisations who could assist you. Consider whether you should have Power Of Attorney as he may not be able to make appropriate decisions regarding his own welfare and safety. Seek legal advice regarding this. Get your son's GP involved - they might be able to help with alcohol and mental health issues. Ask the GP to refer your son to the relevant services. Ask the GP if they have a Social Prescriber who can be assigned to your son to offer him some guidance. ( However, be aware that data protection regulations might require consent from your son before GP will discuss details with you.)

    You also need to prioritise your own health and mental wellbeing. You clearly love your son and want to help him. But it appears that your approach so far, although kind and loving, has not effected a positive change from him and must be causing you a great deal of personal stress and worry, not to mention financial repercussions. You deserve better than that. 

    I wish you and your son the best and I hope the situation improves for you both.

    Take care.

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