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invisible struggles... looking for hope

NAS86955

Hi,

I'm a sister to my elder brother, in his mid 60's now, and only given a diagnosis of autism in later life.

He was sectioned in his teens, diagnosed ( possibly wrongly) as schizophrenic, drugged and  subjected to ECT, then returned home with no further support than ( probably inappororate) anti psychotic drugs.  Our parents did what they could with no info or support and we all lived under a cloud of social shame and isolation.  This negatively impacted all of us, including myself.

I attempted to advoctate for my brother's abilities but was shouted down and ignorered.

 Now, decades later, both our parents have died and I find myself shut out of all attempts to secure suitable support for my brother.

 He currently lives alone in a deteriorating state of self neglect. A few months ago he became seriously ill with sepsis, was hospitalised and nearly died. He survived and I tried to find positive in this crisis by attempting to get more suitable support in place. My attempts failed. He has returned to the same circumstances of serious self neglect and I am once again shut out of all attempts to help.

 Does anyone else share/ understand this scenario?

It's destroying and exhausting me.

It's really good that, today, there has been some progress in recognising autism as a state of diversity that deserves support rather than pathology.

I feel my brother is part of a generation that did not recieve this and the resulting trauma has long term effects.

It's so hard being told that a person has the right to choose self neglect even if it is a threat to life.

Parents

  • Hi, I can resonate with what you have written.

    My brother went through something similar. He's around 60, also sectioned in his teens, diagnosed as schizophrenic (I'm certain that was incorrect) and given drugs which made him very distressed.  He was given a diagnosis of autism only a few years ago, I believe!

    Also, my parents tried their best until my brother walked away from the family aged 30 and he severed all future contact with all his family. I have felt grief and sadness all my life, partly because I miss the brother I knew as a child and also because he has inevitably been so alone in the world. My mother is still alive but I tread on eggshells if I talk about it. Although without contact, we are aware of my brother's situation and he doesn't cope well.

    I now have a son who appears to be similar to my brother. As parents we have chosen a different path in case that could help, but sadly the outcome looks as if it might be similar.

    My brother was bright and pushed to excel and achieve academically. My parents were strict at home with all of us. He was bullied at school and was confused and miserable. My son is bright and he's been home educated where he was allowed to follow his choices and his timings. We've had rules and guidelines but we've been patient and understanding. The outcome would appear to be that he is also confused and often miserable. He is still at home aged 20 and although we are trying to find housing and support for him, there appears to be little out there to cope with the demand. We are also noticing that although he is old enough to make his own choices, he is not good at looking after himself. He has health concerns due to doing little exercise and we still encourage him to drink and eat every day as he often appears indifferent to making what we would consider sensible choices. Looking to the future, we are already seeing that we won't always be allowed to help him make those choices. As he gets older, he and everyone else will decide that it should be him making decisions, even if they are bad ones. It is with fear and sadness that I contemplate that outcome. I agree that it is difficult letting someone choose self neglect.

    Thanks for sharing your post. It helps me process my own sadness and frustrations. I feel a great loneliness a lot of the time. I'm also struggling with anxiety and depression because of the idea that we are so powerless to help these vulnerable people that are close to us.

Reply

  • Hi, I can resonate with what you have written.

    My brother went through something similar. He's around 60, also sectioned in his teens, diagnosed as schizophrenic (I'm certain that was incorrect) and given drugs which made him very distressed.  He was given a diagnosis of autism only a few years ago, I believe!

    Also, my parents tried their best until my brother walked away from the family aged 30 and he severed all future contact with all his family. I have felt grief and sadness all my life, partly because I miss the brother I knew as a child and also because he has inevitably been so alone in the world. My mother is still alive but I tread on eggshells if I talk about it. Although without contact, we are aware of my brother's situation and he doesn't cope well.

    I now have a son who appears to be similar to my brother. As parents we have chosen a different path in case that could help, but sadly the outcome looks as if it might be similar.

    My brother was bright and pushed to excel and achieve academically. My parents were strict at home with all of us. He was bullied at school and was confused and miserable. My son is bright and he's been home educated where he was allowed to follow his choices and his timings. We've had rules and guidelines but we've been patient and understanding. The outcome would appear to be that he is also confused and often miserable. He is still at home aged 20 and although we are trying to find housing and support for him, there appears to be little out there to cope with the demand. We are also noticing that although he is old enough to make his own choices, he is not good at looking after himself. He has health concerns due to doing little exercise and we still encourage him to drink and eat every day as he often appears indifferent to making what we would consider sensible choices. Looking to the future, we are already seeing that we won't always be allowed to help him make those choices. As he gets older, he and everyone else will decide that it should be him making decisions, even if they are bad ones. It is with fear and sadness that I contemplate that outcome. I agree that it is difficult letting someone choose self neglect.

    Thanks for sharing your post. It helps me process my own sadness and frustrations. I feel a great loneliness a lot of the time. I'm also struggling with anxiety and depression because of the idea that we are so powerless to help these vulnerable people that are close to us.

Children
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