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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

  • I'm sorry to hear of this struggling. 

    Unfortunately, I very much doubt he's making well-informed choices. If an individual feels trapped, and decide the least of two horrible outcomes, is that actually making a 'choice'? 

    The term you might be looking for regarding where he's at is professionally called "Absent Insight". Anyone with a lack of knowledge, who didn't receive proper communication (and for Autistics, we use language different enough for it to be alien), won't be able to make an Informed Choice.

    I feel for you, I'm part of this generation. And though I've had enough intellectual abilities to be able to spot the lack of ethics in what might be socially deemed 'moral', I've dealt with enough struggles which continually keep me marginalised to some degree. 

    I think the key here is to find out if he wants to live a better life. But this may mean changing his diet, learning a new habit - but doing things one at a time. Most of us, from what I'm hearing, report auto-immune and dietary issues. I've found a FODMAP diet that works for me, but grain free. I wouldn't really wish it on anyone, but there are many here who have been forced to work these problems out alone.

Reply

  • I'm sorry to hear of this struggling. 

    Unfortunately, I very much doubt he's making well-informed choices. If an individual feels trapped, and decide the least of two horrible outcomes, is that actually making a 'choice'? 

    The term you might be looking for regarding where he's at is professionally called "Absent Insight". Anyone with a lack of knowledge, who didn't receive proper communication (and for Autistics, we use language different enough for it to be alien), won't be able to make an Informed Choice.

    I feel for you, I'm part of this generation. And though I've had enough intellectual abilities to be able to spot the lack of ethics in what might be socially deemed 'moral', I've dealt with enough struggles which continually keep me marginalised to some degree. 

    I think the key here is to find out if he wants to live a better life. But this may mean changing his diet, learning a new habit - but doing things one at a time. Most of us, from what I'm hearing, report auto-immune and dietary issues. I've found a FODMAP diet that works for me, but grain free. I wouldn't really wish it on anyone, but there are many here who have been forced to work these problems out alone.

Children
  • in reply to JuniperFromGallifrey

    Hi, thanks for your reply.

     I agree that a choice made from a place of trauma and fear is not really a choice.

    I've voiced these things and pretty much pleaded for support that acknowledges past trauma and enables real choosing.

    I'm currently trying to suggest moves towards better diet, personal care and a better quality of life....

     but my brother seems to find any suggestions unsettling and will successfully reject any opportunities for change.

    He has removed consent for any professionals to share info with me.

    I manage to speak with him by phone most weeks.

    I acknowledge your strengths in finding your own way through and wish you all the wellness and joy we all deserve.