Where to get support and guidance for family with thirty-something son living at home awaiting assessment

Hi everyone. I'm new here and looking for wisdom around where to get support and advice for our son (and us!). He has lived at home since leaving Uni nearly 14 years ago.He is on a waiting list for a diagnostic assessment for autism after we all (including him) came to the conclusion that he was probably autistic. But we have been told there is still a year and several months left to wait.

He suffers from anxiety. He doesn't work. He does look after himself and contributes to the household chores, helps his grandma with housework one morning week, being paid a little for that and gives much of it to us for his keep. He has no friends, but makes himself go to a walking group near home once a week. He jons in family get togethers with his siblings though rarely sees them separately.

He has had a couple of jobs each lasting a couple of years, but the circumstances of each in the end meant that he had become a shadow of his former self and couldn't stay for the sake of his mental health.

He is good company to me when he is around, but it is also stressful having him here. He and his Dad really don't get each other and I end up being a mediator sometimes. In fact, my son had some counselling some years ago which I think made things worse (before we had thought about autism) because since then my son seems to blame a lot on his Dad - he can't even bring himself to say 'Dad'. They both try to avoid conflict because of me. My husband is retired and my son is at home most of every day too, apart from a walk each day. He spends most of his time on his computer - not usually games but reading and learning, with AI being his passion (and the dangers of the current way it works).

Adults living together having their own ways of doing things is hard enough, but my son's sensitivities (to noise, smells etc) and anxieties mean that we feel we can't be ourselves and do what we would do in our own house if he wasn't around - my husband especially feels this. My son tries so hard but it's not easy for him either, of course. 

I want him to work towards being independent, and although ideally I believe he wants that too, he is unable to see any way forward, and I don't know how to help him. I hoped a diagnosis might open some doors but I'm not sure now from what I am learning, that it will help that much. I am not necessarily asking for direct advice, just to point me in the direction of where we can go to find out what support is possible... thank you so much everyone. I know there are a lot of stories out there, and this is just one.

Parents
  • Hi and welcome to the community.

    It must be difficult for all of you. I think that it might be helpful if he could move out of your home to somewhere where he has support, because eventually there will come a time when you and your husband will either need care yourselves or will no longer be around. He could still visit you regularly.

    I suggest you ask your local council about whether he would qualify for supported living. If he won't until he has a diagnosis or doctor's letter explaining his needs, talk to his doctor about it.

    Also he may qualify for benefits if he is not already claiming them, these NAS articles may help:

    https://www.autism.org.uk/advice-and-guidance/finance-money-and-benefits

    I wish you all well.

Reply
  • Hi and welcome to the community.

    It must be difficult for all of you. I think that it might be helpful if he could move out of your home to somewhere where he has support, because eventually there will come a time when you and your husband will either need care yourselves or will no longer be around. He could still visit you regularly.

    I suggest you ask your local council about whether he would qualify for supported living. If he won't until he has a diagnosis or doctor's letter explaining his needs, talk to his doctor about it.

    Also he may qualify for benefits if he is not already claiming them, these NAS articles may help:

    https://www.autism.org.uk/advice-and-guidance/finance-money-and-benefits

    I wish you all well.

Children
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