49 year old brother recently diagnosed with ASD. Help and advice please

Hi, I have recently taken my brother through a very lengthy process to ascertain if he has some form of autism.   In short, his doctor found an organisation willing to make a diagnosis, the outcome of which confirmed that he has ASD.

 

I will give a short resume of my brother:

He is 49 yrs old, lives at home with my parents and is currently out of work.  He left his full-time employment 10yrs ago and has only worked for very short periods since.

He comes across as shy and anxious, particularly in front of strangers.  He is capable of looking after himself to an extent and often manages the house whilst my parents are on holiday.

However, he does struggle with certain things and would not be 100% capable of finding his own way/going alone if something was to happen to my parents.

 I am seeking help and options for him to live independently and not continue to rely on my parents as inevitably they will not be around forever. At the moment he is visiting a mentor with knowledge of his condition and she is trying to steer him towards getting a job, is willing to assist in interviews and has written a page to accompany his CV explaining his needs etc.   However, this is not moving at much pace, he sees her for 1hr about every 4-6 weeks and has already had a meltdown at the thought of getting a full time job.  Basically his routine is set pretty much at being out of work, although he has been attending 3hrs a week working on a voluntary basis in an Oxfam shop, but this is a dead end in my view.  He typically likes routine and pushes back on any change unless there is a lot of notice (often weeks rather than days).  He is intelligent and can often give a ‘good’  excuse to not do anything he doesn’t want to do.

 I fear the world will eventually crumble around him, and my parents seem to be concentrating on their own lives rather than dedicating enough time to support him. It may sound rather selfish but I do not want to have to look after him when my parents are no longer around.  Although I will support him, I fear I will be in a position to have him live with me and have to deal with the emotion of taking him out of his home (he’ll not afford to stay there, pay bills etc), as well as looking after him.

My ideal would be for him to be in a steady job, be socialising with similar people, perhaps meet a partner as he has never had a girlfriend, and be as independent as possible.  Perhaps buy a small flat, not necessarily move in straight away but stay there on weekends until he gets used to it so it makes things slightly easier for when my parents are not around.  Note as I say, this is my ideal scenario and I know it comes with hurdles and challenges to get there.. I will always be there for him and I don’t want to come across like this is about me!

He is so outspoken by my parents and they are not supporting him anywhere near enough. They often talk on his behalf but when I am there, I ensure he answers his own questions and gets airtime which often frustrates my parents as they can be very outspoken.  I know he is lonely too, so the thought of him living alone is not great, but inevitably that is where he is heading…

 

I would really like to hear from any parents/family in similar positions to me and I understand we all have different circumstances etc.

thanks 

Parents
  • Wow that is a lot of change! Firstly, as you already know - take it really slowly. Introduce each change when he feels ready.

    As for work, you need a complete understanding of his sensory issues as well as the social ones. I've worked in offices and had no life due to shutting down immediately when I got home. This makes life seem worthless as I was just at work or asleep - weekends were lost to just being a zombie. But not having the social confidence to actually meet people to eat their brains.

    My solution is working from home, sticking to my own hours. I have an office that can be plunged into total darkness if I need it to be, and it's almost soundproof.  It wouldn't suit everyone (motivation can be an issue), and I need someone to pay the invoices/do the paperwork - although I am capable of doing it myself, there is the executive functioning missing in me that stops me doing it! So being aware of his limitations is important too - they can't be forced!

    Good luck - it sounds like you have a challenge on your hands!

Reply
  • Wow that is a lot of change! Firstly, as you already know - take it really slowly. Introduce each change when he feels ready.

    As for work, you need a complete understanding of his sensory issues as well as the social ones. I've worked in offices and had no life due to shutting down immediately when I got home. This makes life seem worthless as I was just at work or asleep - weekends were lost to just being a zombie. But not having the social confidence to actually meet people to eat their brains.

    My solution is working from home, sticking to my own hours. I have an office that can be plunged into total darkness if I need it to be, and it's almost soundproof.  It wouldn't suit everyone (motivation can be an issue), and I need someone to pay the invoices/do the paperwork - although I am capable of doing it myself, there is the executive functioning missing in me that stops me doing it! So being aware of his limitations is important too - they can't be forced!

    Good luck - it sounds like you have a challenge on your hands!

Children
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