Anxieties about the future: taking over my brother's care.

Hello Sia. It's a strange thing about the future. We know it's coming, we try to imagine how we want our future to be, and yet often on here people will say that they have an autistic child. They're the ones who forget that they have an AS person, and people grow up.

It sounds to me like your family is the opposite - certainly you are, and I'm glad to hear that you have a life of your own. I like that you're considering the implications for your brother too, it shows what a caring and responsible person you are and it's unfortunate that your personal qualities also mean a personal burden of mixed emotions and confused thoughts.

I think you're suffering perfectly natural 'fear of the unknown'. I hear that some things are giving you great concern, and you're worrying about having to be responsible for your brother. Cosidering that you have normal plans for your life, I'm not surprised that you look on the prospect with trepidation. There's a big black hole in your mind where there should be a plan, but because you don't know what's going to happen, you can't make one and that's what holds you back from knowing what the 'right' thing to do is. That's hardly surprising but at the same time is tortuous for an obviously caring person like you.

There are no right or wrong answers, there are only answers that will work for you and your family.

I have a friend who works in a house for AS people. As far as possible, the staff are there to facilitate the residents' lives, not to run them, and of course residents' needs and abilities vary. What stays the same is that there is always assistance, the house is maintained well, and so they live in a safe and supported environment. My friend's personal qualities are such that she makes very good relationships with the residents, but then she has an AS friend that she's known for a long time - me.

What I'm trying to tell you is that it isn't doom and gloom at all, quite the opposite. There are alternatives that work very well, and whatever you decide you will still be involved because you'll always be looking out for him. If you think about it, you care about your other brother too, in the same way, but not nearly as intensely because he's managing his life. If it went wrong for him, you'd be there. I call that 'family' and that how it works.

Of course you feel that it will be all your responsibility, and it may very well be - who can tell? You would have to choose to be though because no-one would expect you to put your life aside to help with someone else's, family or not. You will also find yourself amazed by the amount of complexity that life can bring, and your ability to handle it.

What you put across to me is that there is a mass of thought and concern in your head at the moment brought about by some changes that have given you a new perspective and changed the game. Experience tells me that it will gradually clear itself, it's just that there's so much going on that at the moment you can't see your way through it. You've made the best start though, you're thinking about it.

You need to have a family conference of course - none of this is your sole responsibility. I think that it won't be comfortable, but really I think you know that it's unavoidable if you're going to find some peace of mind. Here is the only comparison within my experience.

As an AS person, I've had 'support' needs all of my life, mostly without knowing that that's what it was, but that isn't relevant here. I had two sisters who both cared about me, but one went off for a life of her own. The other one was always my 'safe haven' when the world (all too frequently) got too much. I cannot emphasise enough just how much she was part of my life and therefore just how much she guided me. You'll laugh, because we were four years apart, but we compared our reltionship to 'twins'. You'd know the truth of twinship better than me!

When she was diagnosed with terminal cancer, she had three months to live. Her main concern was what would happen to me. I thought she would be more concerned about her kids, but her attitude was that she'd brought them up and knew they'd be fine, so she really didn't worry about them and anyway, they still had their Dad. Sad and regretful to be leaving, of course, but not tinged with fear or concern, except when it came to me. Truth was, I didn't know either, but she faced her fate with courage and dumped me with the challenge of doing the same. I'm trying to live the rest of my life with the courage and expectation that her love for me gave to me. People die, love doesn't.

I won't try to describe to you the enormity of this event in my (AS) life, I don't think I need to because you strike me as someone who can imagine it anyway. I haven't come to any harm, I'm reasonably safe, I miss her dreadfuly, but that's just life, and if I've got the best I'll ever get, there's nothing wrong with what I've got. We had one last, calm discussion, we loved each other very much and we weren't stupid about it - no false excess of emotion, no tears, just acceptance that what will be will be, and we can't stop the inevitable.

So here's my encouragement to you whose words remind me so much of her. Life deals a hand, and we play it. We can complain that there's a key card missing, we can kick and scream about it, but it won't change anything and when the 'emotion' is gone, we still have to have a rationale for playing what we've been dealt. And if you think about it, the more you 'play' the better at it you get!

So it is with you. Life isn't a film that we can 'freeze' at the good bit, and you're only too aware of that, but please, trust yourself. You're starting from the right place because of who you are, and you'll deal with whatever comes because you can. Right now, you don't know how you will, but somehow I seem to 'know' that you will. You're all going to be OK, and sometimes, OK is the best we can hope for.

I can only say what I say and hope that you find the encouragement that I'm trying to convey to you. I wish you all well

Hello Sia. It's a strange thing about the future. We know it's coming, we try to imagine how we want our future to be, and yet often on here people will say that they have an autistic child. They're the ones who forget that they have an AS person, and people grow up.

It sounds to me like your family is the opposite - certainly you are, and I'm glad to hear that you have a life of your own. I like that you're considering the implications for your brother too, it shows what a caring and responsible person you are and it's unfortunate that your personal qualities also mean a personal burden of mixed emotions and confused thoughts.

I think you're suffering perfectly natural 'fear of the unknown'. I hear that some things are giving you great concern, and you're worrying about having to be responsible for your brother. Cosidering that you have normal plans for your life, I'm not surprised that you look on the prospect with trepidation. There's a big black hole in your mind where there should be a plan, but because you don't know what's going to happen, you can't make one and that's what holds you back from knowing what the 'right' thing to do is. That's hardly surprising but at the same time is tortuous for an obviously caring person like you.

There are no right or wrong answers, there are only answers that will work for you and your family.

I have a friend who works in a house for AS people. As far as possible, the staff are there to facilitate the residents' lives, not to run them, and of course residents' needs and abilities vary. What stays the same is that there is always assistance, the house is maintained well, and so they live in a safe and supported environment. My friend's personal qualities are such that she makes very good relationships with the residents, but then she has an AS friend that she's known for a long time - me.

What I'm trying to tell you is that it isn't doom and gloom at all, quite the opposite. There are alternatives that work very well, and whatever you decide you will still be involved because you'll always be looking out for him. If you think about it, you care about your other brother too, in the same way, but not nearly as intensely because he's managing his life. If it went wrong for him, you'd be there. I call that 'family' and that how it works.

Of course you feel that it will be all your responsibility, and it may very well be - who can tell? You would have to choose to be though because no-one would expect you to put your life aside to help with someone else's, family or not. You will also find yourself amazed by the amount of complexity that life can bring, and your ability to handle it.

What you put across to me is that there is a mass of thought and concern in your head at the moment brought about by some changes that have given you a new perspective and changed the game. Experience tells me that it will gradually clear itself, it's just that there's so much going on that at the moment you can't see your way through it. You've made the best start though, you're thinking about it.

You need to have a family conference of course - none of this is your sole responsibility. I think that it won't be comfortable, but really I think you know that it's unavoidable if you're going to find some peace of mind. Here is the only comparison within my experience.

As an AS person, I've had 'support' needs all of my life, mostly without knowing that that's what it was, but that isn't relevant here. I had two sisters who both cared about me, but one went off for a life of her own. The other one was always my 'safe haven' when the world (all too frequently) got too much. I cannot emphasise enough just how much she was part of my life and therefore just how much she guided me. You'll laugh, because we were four years apart, but we compared our reltionship to 'twins'. You'd know the truth of twinship better than me!

When she was diagnosed with terminal cancer, she had three months to live. Her main concern was what would happen to me. I thought she would be more concerned about her kids, but her attitude was that she'd brought them up and knew they'd be fine, so she really didn't worry about them and anyway, they still had their Dad. Sad and regretful to be leaving, of course, but not tinged with fear or concern, except when it came to me. Truth was, I didn't know either, but she faced her fate with courage and dumped me with the challenge of doing the same. I'm trying to live the rest of my life with the courage and expectation that her love for me gave to me. People die, love doesn't.

I won't try to describe to you the enormity of this event in my (AS) life, I don't think I need to because you strike me as someone who can imagine it anyway. I haven't come to any harm, I'm reasonably safe, I miss her dreadfuly, but that's just life, and if I've got the best I'll ever get, there's nothing wrong with what I've got. We had one last, calm discussion, we loved each other very much and we weren't stupid about it - no false excess of emotion, no tears, just acceptance that what will be will be, and we can't stop the inevitable.

So here's my encouragement to you whose words remind me so much of her. Life deals a hand, and we play it. We can complain that there's a key card missing, we can kick and scream about it, but it won't change anything and when the 'emotion' is gone, we still have to have a rationale for playing what we've been dealt. And if you think about it, the more you 'play' the better at it you get!

So it is with you. Life isn't a film that we can 'freeze' at the good bit, and you're only too aware of that, but please, trust yourself. You're starting from the right place because of who you are, and you'll deal with whatever comes because you can. Right now, you don't know how you will, but somehow I seem to 'know' that you will. You're all going to be OK, and sometimes, OK is the best we can hope for.

I can only say what I say and hope that you find the encouragement that I'm trying to convey to you. I wish you all well