Options For Looking After Adult Sibling With Autism

Hi everyone. I'm hoping this is the right place for me to get some things off my chest. I have an older sibling (7 years older, early 40s) who has learning difficulties and autism. He lives with our mother and has a part-time job. Suddenly, I have been overcome with dread/worry that one day our mother is no longer going to be around and that my brother is going to be 'on his own'. I am trying to come up with a plan that will see him alright; although this will hopefully not kick in for 20 years given the age of my mother, I'll feel more comfortable knowing that we have options when the time comes.

My mother mollycoddles him and seems to do everything for him so I don't exactly know how much he can do in terms of everyday tasks, i.e. washing clothes, cooking, etc. He can do all the bathroom/hygiene things himself so I don't think he would need round the clock care. He also travels around the country on day trips by himself so he does stuff independently. Him and our mother live in social housing and money is not exactly abundant. I've told my mother that I can't live with him due to other factors in my life and relationship and she seems to think that he will end up in sheltered accommodation. Whether this is fantasy or not on her behalf I don't know but she doesn't seem to be keen on planning what will happen.

I live a 3 hour drive away so I was thinking I could go and visit once a month and our siblings can check in on him as they will be more local. Me and my brother barely communicate but I know that he will want to keep his life as normal/familiar as possible so living in the same city as he is now is the only option.

How can I make sure he eats properly? I've been thinking of batch cooking but space is an issue of course. Also, I was thinking of keeping an eye on his bank accounts so I know how much he spends because I don't know how good he is with money and I can't afford to bankroll him completely.

As things stand today, are there any/many support options for middle-aged and older autistic adults but for whom don't need round the clock care?

  • Hi NAS83307,

    How sensible and practically-minded of you to look at how the future might look for your older sibling and how you might be able to help support him, given that you live such a long way away from him. 

    Two questions: Are your other siblings prepared and able to provide support and generally keep an eye on your brother and help practically where needed and does your brother have a social worker? If your other siblings are able to share in your brother's care, that's great. If he has a social worker, it would be good to be able to liaise with him/her in looking at your brother's needs and how they can be met. 

    I have 4 adult children, the youngest 3 of whom are on the autistic spectrum. The youngest of these has had a very difficult few years, but my eldest son has worked hard to support him and has liaised with the social worker and with me to find the best solution to his sibling's difficulties. I'll not go into all the details, but as a result of us working together, the younger son has now accepted an offer of a place at a supported living facility, and will continue to get good help in his situation.

    I do hope things work out well for your family.

  • Hi NAS83307,

    Have you heard of the charity Sibs? They have (online + in person) support groups for people with disabled siblings.

    A topic which frequently comes up in the group I attend is planning for the future and others in the group offer their advice and experiences.

    I know it's not a direct answer to your situation however it may help you find what the options are. 

  • Hello NAS83307,

    It's wise of you to think ahead and come up with a plan for your brother. The NAS website has a directory and if you type your postcode you might find help near you. Here is the link: https://www.autism.org.uk/directory

    All the best,

    Karin Mod